4 months later - posing with my 150+page hospital chart

my stroke survival story...

I know a blog is a diary.... and I doubt this posting will someday become a real "blog" but I just want to get my story out there as soon as possible.

I would like to draw attention to something that happened to me. Although it could make for an interesting story to read (almost like an episode from “House”), I am really just looking to help spread the word so that my condition could be better diagnosed in someone else. The more I tell my story, the more I hear about other similar cases. I would love to help spread the word about stroke in young adults, and the importance of an accurate and quick diagnosis.

I am a healthy and happy 32 year old that suffered from a stroke on Thursday, November 29th, 2007. It was not diagnosed as a stroke until Saturday, December 1st – after countless tests, exams and scans. The fact that it took almost 48 hours to diagnose my stroke still haunts me – I know I am extremely blessed and fortunate to be alive.

Four weeks prior to my stroke – on Halloween morning, I woke up with a terrible throbbing headache in the back of my head. It really felt like there was something wrong with me, so I went to my primary care physician. She diagnosed me with a sinus infection and prescribed an antibiotic. She explained that sinus infections in the back of the head are rare but do occur. My other symptoms disappeared after I finished the antibiotic, but I still had a strange throbbing in the back of my head – sometimes several times a week. I took Tylenol and told myself I would go back to the doctor after Thanksgiving.

I was first admitted to the emergency room on the morning of Thursday, November 29th. I woke up that morning feeling dizzy, hot and clammy. The headache in the back of my head was severe, and I had tingling in my arms and legs. I just didn’t feel like I was in my own body. I had some trouble getting my words out when I spoke. Somehow I managed to take my 8-month-old son to his daycare. His teacher commented on the fact that I was shaking – this I had not realized. I called my mom and explained my morning to her and she said that I sounded strange on the phone. A few moments after our conversation, I choked on my breakfast and suddenly had the sensation that my throat was closing.
I panicked and had somebody call 911. When the paramedics arrived, they said that perhaps I was having a panic attack – although there is no history of these attacks in my family. They took me to the emergency room where I passed the stroke test, and had both a CT scan and an x-ray. I was eventually released with the diagnosis of “panic attack and possible sinusitis.” Upon returning to work, I looked in the mirror and noticed one of my eyes appeared smaller than the other – like one side of my face was a bit droopy. I still didn’t feel like myself.

That night – actually, around 3 am – I woke up with another “hot flash” feeling. I figured this was another “panic attack” so I took a sip of water – but this time choked terribly. It was though I had poured the water directly into my lungs. I could not catch my breath or speak. I remember banging on my bedroom mirror as I looked at myself in horror. I really felt like I was going to choke to death. I could barely mouth the words “911” to my husband. Over the next several minutes before the paramedics arrived, I was able to cough up the water and catch my breath. I could talk, but I could not think clearly.

This time the trip to the hospital was different. I kept vomiting and could not swallow my own saliva. I think I made a terrible mess of the ambulance. I can barely remember the faces around me. When I got to the ER, I kept alternating spitting and puking into a bowl. I was choking on vomit so they gave me some anti-nausea medicine. Everybody seemed quite puzzled with my condition. I was the girl who could not swallow. I could not tell them what was wrong and I was getting more and more frustrated. I felt a million miles away from my own body. I don’t remember being in any pain, just terrified that I could not swallow. I was in extreme discomfort.

After about 12 hours of tests - and waiting - in the emergency room, I was placed in a room with a roommate on the 8th floor. The poor lady next to me! The next few hours seemed like the longest in my life. I think I finally saw my doctor at 4pm, and I barely remember the specialists she had almost immediately at my bedside. The ENT stuck a small scope up my nose and down my throat but did not see anything strange. The Gastroenterologist said the same – nothing he could do. At around 7pm, the neurologist arrived – and this is when things really got scary. She quickly determined that I was in far worse condition than anyone thought. After her exam, she called the Rapid Response team to take me to the Neuroscience Intensive Care unit. Suddenly everything changed for me. I was the center of all the attention and had at least 5 nurses and specialists around me at all times. They were all still puzzled – nobody said the word “stroke.”

I don’t remember much of what happened next. I do remember that they were talking about a possible infection of my brain stem. I remember being told that I needed an MRI in order to be properly diagnosed, but I could not hold still long enough to get one because I was constantly spitting into a bowl. The decision was made to put me to sleep and intubate me for the MRI, so that I would remain motionless for an extended period of time while on a breathing machine.

When I awoke, I coughed on my breathing tube. I had to write on a piece of paper in order to communicate. A doctor blurted out that I had had a stroke – he assumed somebody else had already told me. I remember feeling relieved that we had finally found the cause for my suffering. I felt like the scary part was all behind me, but I was wrong. The stroke occured in my brainstem - causing Lateral Medullary Syndrome (Wallenberg's Syndrome) & Horner's Sydrome. As a result, I was completely unable to swallow and had other symptoms such as hoarseness, dizziness, hiccups, nausea and vomiting, and lack of pain and temperature sensation - numb limbs - on my right side, and also drooping upper eyelid, constricted pupil, and lack of pupil dilation on the left side of my face.

My stroke was a result of spontaneous Vertebral Artery Dissection. The doctors told me there was evidence of trauma to my left vertebral artery located in the back of my neck. According to VertebralArteryDissection.com : "Vertebral Artery Dissection is a dissection of the wall of the vertebral artery, leading to the formation of an aneurysm that may occlude the vessel...Cervical fractures or related neck injuries and craniocerebral trauma are commonly associated conditions, although this process may occur spontaneously. Ischemia, infarction, and hemorrhage in the vascular distribution of the affected vertebral artery may complicate this condition." There are many things that can cause an artery to dissect, but the exact cause of my artery dissection is unknown.

I spent almost 3 weeks in the hospital trying to recover and to re-learn how to swallow. I had speech therapists, physical therapists, neurologists, pulmonary doctors, and infectious disease doctors visiting me around the clock. I had to sleep propped up and continue to do so for fear of choking on my drool. A feeding tube was placed up my nose and down my throat, into my stomach. I had a “sucker” to use in my mouth to suction up my spit. I had a PIC line inserted into my arm for blood tests around the clock. I developed a type of aspiration pneumonia from saliva getting into my lungs. I was, of course, the youngest stroke victim that most of them had seen. Doctor after doctor would enter my room, turn around and walk out, check their chart and re-enter in shock. After two weeks, I made tremendous improvement with everything but my swallowing. The decision was made to surgically place a feeding tube in my stomach so that I could leave the hospital and feed myself nutrition shakes at home.

Fast forward a bit – I have been home for over 4 months now and am doing much, much better. I had to have a nurse come to my home for the first few weeks, and I was readmitted to the hospital for almost a week because of an infection at my feeding tube site. I underwent speech therapy using neuromuscular electrical stimulation for two months and finally learned to swallow well enough to have my feeding tube removed. I still have a lot of difficulty swallowing – especially liquids. I am still on coumadin, along with many other prescriptions, so I have to watch my diet and I bruise very easily. I don’t have much sensation in the right side of my body so I cannot feel much pain or any temperature. When I talk to strangers, I have trouble getting my words out quickly. I also have a small scar on my stomach from the feeding tube. These are small discomforts compared to the massive impact that my stroke has had on my life. I have a friend who suffered a stroke a few years ago. We had been out of touch for years, but she contacted me after learning of my stroke. She told me that I must look at this as a positive experience – and so I have. I take nothing for granted and am thankful for every day that I have. I pray daily, and make sure to tell people I love them. I literally stop and smell the roses. My life before was very rushed. I plan to never again live my life in “superwoman speed” – as my husband puts it. I used to be focused on so many things that did not matter.

Two days after I was able to go home, my husband asked me if I wanted to go to Tysons Corner Mall so that we could take our son to see Santa. I rejoiced at this opportunity. My husband pushed me through the mall in a wheelchair with my then 9 month-old on my lap and I could not stop smiling the entire time. Just a few months before, I don’t think I would ever have been seen in a wheelchair in public. However, I have learned that once you spend weeks walking up and down the hospital hallways with a feeding tube hanging from your nose and a bag of stuff hanging from your IV pull, any feelings of vanity disappear. It is great to realize that it is okay to go to the grocery store without mascara because I am just grateful to be able to go. I am so very thankful for everything. I try hard not to worry about the things in life that do not matter.

The more I learn about stroke in young adults, the more I learn that it is not as uncommon as you might think. We all start with similar symptoms: severe headache, dizziness, weakness in a limb or loss of sensation. We are so often misdiagnosed by physicians, EMTs and paramedics because we do not fit the profile of a “typical” stroke patient.

The American Heart Association states that stroke is the third largest cause of death and the leading cause of severe, long-term disability in the United States. According to the National Institute of Neurological Disorders and Stroke, stroke damage in the brain can affect the entire body - resulting in mild to severe disabilities. These include paralysis, problems with thinking, problems with speaking, and emotional problems. Every minute counts. The longer blood flow is cut off to the brain, the greater the damage. The most common kind of stroke, ischemic stroke, can be treated with a drug that dissolves clots blocking the blood flow. The window of opportunity to start treating stroke patients is three hours. But a person needs to be at the hospital within 60 minutes of having a stroke to be evaluated and receive treatment. In young patients, that window of opportunity is often missed.

The American Stroke Association wants everyone to learn the warning signs of stroke:
• Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
• Sudden confusion, trouble speaking or understanding
• Sudden trouble seeing in one or both eyes
• Sudden trouble walking, dizziness, loss of balance or coordination
• Sudden, severe headache with no known cause
• Not all the warning signs occur in every stroke. Don't ignore signs of stroke, even if they go away!
• Check the time. When did the first warning sign or symptom start? You'll be asked this important question later.
• If you have one or more stroke symptoms that last more than a few minutes, don't delay! Immediately call 9-1-1 or the emergency medical service (EMS) number so an ambulance (ideally with advanced life support) can quickly be sent for you.
• If you're with someone who may be having stroke symptoms, immediately call 9-1-1 or the EMS. Expect the person to protest — denial is common. Don't take "no" for an answer. Insist on taking prompt action.

A person having a stroke can be the last one to realize that they are fumbling with balance or words. As I was talking to my mom that morning on the phone, she said my voice sounded slurred and yet I did not realize it at the time. Obviously, I did not know that I was having a stroke. Once my initial symptoms disappeared (the dizziness and hot-flash feelings) I didn’t push for somebody to diagnose me as having a stroke – I assumed that everyone around me knew everything. Looking back, maybe if I had been more familiar with the fact that strokes can happen to people in their 20s and 30s I might have refused to let the Emergency Room dismiss me. Their stroke test was so quick and obviously worthless to me. If I had known what I know now, I might even have pushed for an MRI/angiogram sooner. You never know, but if I could now help just one person to recognize stroke symptoms in themselves or in someone else it would be a wonderful thing.

Please help me to spread the word about stroke diagnosis.


Sources: http://www.vertebralarterydissection.com/,
http://www.americanheart.org/, http://www.strokeassociation.org/,
www.ninds.nih.gov (National Institute of Neurological Disorders and Stroke)

200 comments:

Anonymous said...

Shanna,

Your story is moving, heart wrenching, chilling, and miraculous. I am sending this on to as many people as I know for I never thought before hearing your story I would have known anyone remotly close to your age to have a stroke.

Anonymous said...

I love you, Shana. I am thankful every day that you are still with us. I am going to share this story with everyone I know. You are a walking miracle. Hugs to you and to everyone that held your hand through this trauma. Slow down Superwoman! Remember this...She does more in one hour than we can think about doing in a day.

Anonymous said...

Shana, You are truly an amazing woman, and we are all so fortunate to have you in our lives. Your story is one that will make others stop, think, and reevaluate their own lives. I am passing your story on to others as well so that we can all be a little more aware of strokes and the side effects from them. Enjoy every day and hug on that little one of yours as much as possible.

Lisa Marlene said...

Hi Shanna -

I just received a copy of your story from my sister via her husband at Freddie Mac. First off thanks for your story. I have a similar one to share that happened to me when I was 31 and I functioned for a few days (driving, working, etc) before it was diagnosed that I had ruptured a blood vessel in my brain. Unlike you there was no pain/headaches...I just woke up one day with numbness on my right side and general confusion with fine motor skills. I was treated at Johns Hopkins and Neurosciences in Reston. Today, 9 years later, while I consider myself healthy, I do still fumble through my words when I'm meeting new people, am a bit tired or have had a glass of wine. And there is still a lingering numbness on my right arm but I think of it as a reality check on what I could have faced.

Good luck to you and thanks for your story and spreading the word.

Best,
Lisa

Anonymous said...

Shana,
You have got to be the bravest person I know. To think that I saw you numerous times throughout your recovery and had no idea the depth of the pain you were in. You carry yourself with such grace.
What a great thing to tell your story in hopes of helping others- I will be sending it to my friends for them to read as well.
I love you:)

Anonymous said...

Shanna,

Thank you for sharing your story. You are truly blessed and have shared that blessing with all who read this blog.

Brittany Nelson

The Finn Family said...

Thank you for sharing your story. It really puts life into perspective to hear about the trials that others are going through.

Take care of yourself!
Shana

BTW, it is always neat "meeting" other Shana's!

Unknown said...

Oh, my Shana. I'm a RN who takes care of babies. I can't imagine someone your age having a stroke. You're doing a great job educating the public. God bless you.

Anonymous said...

Hi Shana,

the way i reacted wasthat i locked myself in my bathroom when. I was crying and crying. i didnt know what jack Paul and your parents and i do without you.
im glad you are better!

LOve KYLIE
(your neighbor)

Anonymous said...

Shana

Jes just sent me the link to your blog. It's been so long but I want to thank you for sharing your story and tell you how amazing I think you are.
I'm so glad to hear you are recovering.

love to you and your family,

Meg Murphy

Anonymous said...

Shana, I think it is so wonderful that you've written your story down and shared it with so many people. It gives me pause to think about so many of the things you've said - particularly about not trying to be superwoman and taking time to value the things that matter most. I think you are a great inspiration and am so glad to know the lovely person behind the story!

Anonymous said...

Shana, when I received the Elon Magazine, and came upon your story I was absolutely dumbfounded! We have been dealing with my grandmother's ongoing issues with various strokes, and it is so crazy to hear of someone 60 years younger going through a stroke as well! I am so happy you shared your story and I just passed it on to everyone in my family so that they can remember that this does not just happen in the lives of the elderly. You are awesome, and I'm so glad to have known the brave woman behind this miraculous story.

Mandy P said...
This comment has been removed by the author.
Mandy P said...

Shana,
When I heard about your story I couldn't believe it! I am now a cardiac nurse and I have shared your story with everyone I can at the hospital, early detection is so important. I even had a patient recently who, like you, was in her early 30's and had a stroke and went down a similar path. She had a family with small children, had to go to rehab and she also had a feeding tube. You are doing a great service by sharing your story - thank you. You've always been a go getter and this is no different, your story has and will continue to bring attention to strokes! Thank you, and I am so happy that you have made through this life changing event! My hat is off to you for making the world a better place!!!
I Love You Girl...Mandy P

Anonymous said...

Shanna
you ROCK! I too am a stroke surivior at what i consider a young age of 42. please send me your address and -shirt size and i'll send you a stroke survivor t-shirt. you def need one! Keep up the positive attitude, it will take you far and don't ever give up, the brain keeps learning daily.
--kim strong
mathgeek3_15@hotmail.com

Cat said...

Shana- although I don't have any health problems to speak of, I am greatly inspired by your story, and very sorry I didn't know sooner to lend my support. I miss being in touch more often, and would love our kids to play together and get to know each other. I am posting your blog link and story on mine, and hope what few readers I have will also be inspired/informed and pass it on. Stroke is something I usually give no thought to except in context of older people, what an eye opener. I also am inspired by your refocus on what is important in life- we should all live our lives that way! Love, Cathy B

Tara said...

Aloha, my name is Tara. I had a massive stroke three years ago and it left me in a coma and unable to see, think, move basically everything had stopped and I was in intensive care for 6 months.

I don't even want to talk about the cost of all of this AyAyAYI! In any case this message that you left inspired me greatly to respond as what I deal with everyday has many similarities to your experience. At this point I am still not able to walk without a walker and I am not able to read or write or see for the most part.

My life is excruciatingly painful and I live with so many pain meds. This is difficult coming from a person who is a real health nut and one who never even took an asprin before. What I would like to say to those of you out there as there is so much to my story that I have not the time to write right now but i want to say to you that so much of what you said is true to my story. The headache is beyond all description and that must be something that happens with most stroke sufferers.

The other symptoms you write about seem to be very common to me too. I would love to hear back from you, Shanna, should you want to want to stay in touch with another stroke victim.

I send you lots of aloha from Maui Hawaii

Anonymous said...

wow! shanna, what an amazing and terrifying story.i am so glad you are alright. you have always been so strong and smart. its a blessing to have you as a friend. i hope this finds you well and with the beautiful outlook on life that always bring to the table. much love. you are an inspiration to everyone!

Anonymous said...
This comment has been removed by a blog administrator.
Anonymous said...

Hi Shana,
I am 37 years old and had a pons stroke in December. I am very fortunate to have fully recovered, and the more I read the more I realize how lucky I am. Doctors are still trying to figure out what happened and I'm interested to learn more about whether vertebral artery dissection could have caused mine. Was your stroke in the pons? Do they know why you had vertebral artery dissection? Please email me at sshawyer@jmpeng.com. Thanks.

Anonymous said...

Shanna,

I have been searching and searching for someone young who has had this type of stroke. I have a male friend age 32 who in Nov 07 had the same type of stroke. He still to this day has a feeding tube and a machine to help with the secreation. He also has a trach. He's having a really hard time w depression. He's now 33 and can't imagine living the rest of his life this way. I read him your story and he cried. Your story did give him a little hope. If you have any info I can pass along to him that would help. Please email me at nickircu@yahoo.com

Eugenie said...

Thank you for sharing your story and championing this important cause! Good Job! I had my stroke in 2006, at 42 and am confined to a wheelchair without use of my left side.

Anonymous said...

Shanna,

What an amazing story. You are an inspiration. It is so wonderful you are sharing your story to help others. It is crazy how these experiences change our perspectives on life. You look fantastic and I am so glad to hear you are doing well.

Love,

Amy Glass
" Your old pledge mom"

Christi L. said...

My friend had a stroke at 32 and I will admit that until I read your blog I don't think I would have known what to look for. Thank you so much for your story. I believe the Lord will use you greatly through this trial. God bless you and your family.

Anonymous said...

Shana,
Thank you very much for sharing your story. I had a right vertebral artery dissection almost 2 years ago. I've lost the hearing in my right ear and continue to have cognitive and balance challenges. As the saying goes, Every day above ground is a good day!

flamefiter43 said...

Shana, I was so humbled by your detailed account of stroke incident. What an unbelieveable story...I am sorry I missed the TV clip but will find it somewhere.

I spent over 34 years reaching out and helping people...I found my calling.

Looks like you have now found yours as an advocate for stroke victims...I wish you well, and keep doing what you are doing...You are reaching so many people who don't have hope...

Joel Hendelman

Jacqueline said...

Hi Shana,

I saw you on either 'Good Morning America' or 'Today' recently. The fact that I can't remember which show has nothing to do with the stroke I had 3 months ago. It's just old age! I am a 42 year old mom and wife and, like yourself, find myself thinking and saying "I had a WHAT?!" I am young, eat well, work out--all that good stuff. But no-one told my vertebral artery that I am too healthy for a stroke.

I am recovering well at home, now, and I feel tremendously fortunate. I do have short bouts of panic when I think about what could have happened or what could happen again. I have not read all of your blog. I'm just not ready to re-live some of that. But I will continue to read as I feel ready.

I just wanted to thank you and let you know that it's so encouraging to see you doing well. It bouys my own hope and optimism for the future.

Best of luck to you.

Anonymous said...

Hi Shana,
I'm a freelance writer working on a health story and would be interested in interviewing you about your experience in the ER. Would you drop me a note at amy@amy-sutton.com? (and delete this comment afterward - I couldn't find another way to reach you).
Thanks,
Amy

Anonymous said...

hi there... it is good to read about ur experience.... i am a 26 year old female.....i suffer from stroke on 30/10/2011.....much of wat i went thru is similar to yours.... but i still can't move my left fingers now

Anonymous said...

Shana- thank you for sharing your story. I had a brain stem disection Wallenberg stroke in 1998 when I was 30 years old. I had that out of your body feeling in the middle of a busines meeting in San Francisco. Since I was 13 I had suffered awful migraines and after leaving the meeting i called my dad who is a physician and he thought it was probably an a-typical migraine. At this point my voice was very high and my right eye was starting to droop. I called my boyfriend (now husband - god bless him) and he said he'd meet me at home as soon as je could. By the time my now husband got home he took one look at me and rushed me to emergency. I could not feel on left side of my body nor swallow well, my right eye was almost completely closed - and I had this out of body feeling. We got to er and waited at eat 4 hours to be seen by a doctor - they also thought it was an a- typical migraine as I did have awful migraine at this point. They treated me with some heavy- dose pain killer and said I could leave if I could stand up and feel ok. That's when I knew it was awful as I fell right over - like a magnet was pulling me down. Then they did all the test - mri's and many more. They could not figure out what was going on as every test was fine. I then started puking and they admitted me - I puked all night - yes I also had a poor roommate who had just got her appendix out and was missing her graduation trip to Hawaii. I felt bad for her. Am intern kept poking me on both legs akin if I could feel anything which I could on my right leg but could not on my left side. At this point I thought i jhad a tumor or aneurism or cancer - I thought I was dying. My parent were arriving in the mornin - they lived few hours away - I hoped I would be better by then but it was getting worse. Then in the morning a neurologist (my angel) came in took one look at my chart and me and new exactly what I was going through was wallenberg syndrome stroke. They were unable to detect it in the previous tet as they did not check my brainstem where I had a dissected artery. The first thing I asked the doctor was if I would be ok and recover - he said yes and from there on I knew I would be ok. I was in the hospital a few weeks not being able to walk, not being able to focus, puking, (my eyes were moving back and forth making me also puke)' and also not able to swallow - I had a feeding tube for 2 weeks. After good medication I got better and was released after 3 week or so on a walking cane. My father, being a physician and seeing many sick people who never recover, later told me he thought that they were going to have to spoon feed me for the rest of my life in a wheel chair). Well, I can happily say that 14 years later I have had twin boys who are now 10 and a 4 year old and am maaried to my then boyfriend- all boys!!! I still have some residual effects from my stroke- lethargic ( my energy is low and it is a struggle to always keep up with all my very active boys), I've gained weight, my migraines have worsened and my eye sags when I'm exhausted. So nothing compared to what it could have been. I have never wrote about my experience and the doctors have never figured out exactly how the strike occurred - maybe hit to head ( I was an active snowboarder and athlete), maybe it was just there and one doctor thinks it was stress. So I'm very happy to be here today with three healthy children and a loving husband. I really wish I could get rid of these migraines and have more energy and drop the weight - stories like yours give me tremendous hope and thankfulness - thank you !

Anonymous said...

Shana, thank you for sharing your story. I too suffered a stroke and laterally medullary syndrome as a consequence of an artery dissection (cervical). I am only 50 years old so no one thought of stroke until too late. I had a tired week: rushing to dig potatoes with my 12 year old son and beat the frost, picking my archeologist husband up at the airport, and hiking our favorite hill as a family to celebrate. I checked into the hospital for a gallbladder surgery. I was discharged the morning after surgery, with a warning by the anesthesiologist that my blood pressure spiked and a slightly slower recovery than norm. I started to recover sufficiently to make myself poached eggs for breakfast. By noon, I had vomited breakfast up, expelled it from the other end, the "migraine" was horrible, had fallen off the toilet, and was too weak on my left side to walk to the bed. I am lucky my husband was there, as he called ER. I came to intermittently. One time I came to, I was worried about the mess I was leaving him to clean up. The other time I came to, I was perturbed at why the emergency room doctors shoved my stretcher into a corner at such an odd angle. Four days later after transfer out of ICU, and coming to sufficiently to look and talk to the floor nurses, we both realized at the same time that my eye and mouth sagged and that I'd had a stroke. I am lucky to be alive. There was a great Neurologist who had just established S.O.P.s (standard operating procedures) for the hospital and rehab - unfortunately those procedures had not trickled down to the E.R.! Hospital staff visited me with limited pretense just to see the younger case with the odd stroke, my G.P. was at a loss, and neurologists and endocrinologists months later continued to think I was crazy or depressed. It was only 9 months laterally that I received a diagnosis of lateral medullary syndrome, after dealing with the "deficits" one by one and with puzzlement from my followup team. I started with a tube to suck things out of my stomach, a PIC in my neck to mainline stuff into my body and draw blood, went to rehab where I got out ahead of time due to "only a balance deficit". I made progress until May including regaining my ability to swallow thin liquids, after robust speech therapy. However, after May, my Physical therapists, cognitive therapists and the neuropsychologist tracked continuing decline. I was sweating (mostly on one side) just getting up from the couch - actually make that sweating while thinking! I was no longer able to distinguish dizzy from lightheaded or catch my breath. Luckily 5 month earlier someone had suggested a sleep study (yes, it takes that long to receive treatment). Turns out I had "Central Sleep Apnea", a deficit often associated with Horner's and Wallenberg's syndrome. What a relief to breathe easily and walk again!

Dianna said...

Wow! I am glad that you were finally diagnosed correctly & treated. I too had a mild stroke 1 year ago (Aug 29,2011), but thankfully I did not go thru the severity that you did. I was 49 yrs old, and in pretty good health so it was a bit of a surprise to me. I didn't pay any attention to what was happening. Mine was about 10:00 at night, but that morning started out with waking & turning my head, hearing a loud crack. Later that night I thought the tingling was from a pinched nerve. I do remember feeling kind of out of sorts earlier in the afternoon, but figured I was just tired. That night, I was at my computer & feeling agitated so I decided to brush my teeth & go to bed. The tingling started in my mouth right after I had brushed my teeth & used mouthwash. Again, I didn't think much of it figuring it was from the mouthwash. Within a few seconds, the entire right side of my body was tingling. That's when I thought it was a pinched nerve. After 3 days of the tingling, I decided to go to Quick Care. They sent me for an x-ray on my neck (like that could see nerves..lol) A couple of days later, the doctor set an appointment with a neurologist who in turn set up an MRI. So after tingling for almost 2 weeks, they did the MRI and told me that I had a stroke. Also, I found out that I have a small brain tumor on the cerebellum, but it is not the type that will become cancerous. Today, I still have tingling in my right thumb and lower right chin & lip area only when touched, but I feel very fortunate that mine was mild.

Anonymous said...

Hi!

Thank you for posting this information. I was hit by a Wallenberg stroke on February 24, 2012. It came on rather suddenly beginning with a severe headache and intense vomiting. The headache went away but the vomiting continued and powerful vertigo forces started spinning me around. At one point I was flat on the floor and couldn’t even sit up. I also noticed my left arm felt very hot. This was 2:00am and the ambulance took me to a Denver hospital that was alledgedly a noted stroke center. In the emergency room they ran blood tests and diagnosed me as having a severe case of the flu. They really blew it!!! Throughout all of this they never asked me to stand up … I would have been unable to. The Doctor started a fluid drip and said I’d feel better by morning. At 5:00AM she came back in and asked how I was doing. I know the flu and told her she was wrong, this is far worse. She ordered another fluid bag saying it would be empty by 10:00am and they would release me then. At 10 I felt even worse and the nurses were very concerned. Still, they put me in a wheelchair and released me. Shortly afterward, the hiccups began along with blurred vision and a drooping left eye. My son came over and was shocked. He took me to another hospital, Denver Health and they were excellent. They had an idea what it was almost immediately and confirmed it by an MRI which clearly showed the clot. One physician, speaking off the record, said the clot could have been dissolved had they known what to do. However, at that point I was past that and the stroke did its damage.

It is now 9 months out from the stroke. My vision has fully resolved. My voice is a little crackly and often I break out coughing from swallowing saliva. I can walk … but not very well. My legs feel weak and difficult to control. I feel tired every day and have a tough time sleeping at night. Like some on this site, I have little pain feeling on my left side. I can still pick up a pin and feel the wind, but little or no pain. I expect for all of us, depression is lurking close by. It is for me. Prior to the stroke, I was riding my bicycle up mountain trails and enjoying life. Now it’s a struggle to keep my house clean. I seem to run out of energy fairly fast. Well, I expect I’ll wait longer and keep forcing the muscles. The Doctors predicted almost a full recovery. It hasn’t happened yet.

I’d like to send my best wishes to everyone going through this ordeal. I’ve seen improvement is steady but verrrrrry slow. Sometimes we have ideas about what is wrong. They may not be clear but what a Doctor is telling us may not always have the ring of truth and we might know it deep within us. If that warning bell is going off, please do not hold back from making a scene with the Doctors if they are not listening. As we see from this site, they make mistakes.

Take care
jerry

Robin said...

Thank you for writing about what happened to you. I am so sorry you went through so much.

I had a vertebral artery dissection and subsequent strokes too (though not affecting my swallowing...that would be awful!) and am convinced it would have been missed if I hadn't been a physician and therefore had a little more control over my ER experience. As it is, it's hard to find much out there or get the correct treatments. So thank you for having this out there for me to find when I needed it!

Anonymous said...

Hi my name is Nicole and i too had a stroke about 3 weeks ago. I have a 4 month old baby. and am in good health. It happened one night while setting up the nursery for my baby....i was vaccuming and i just dropped.I had a wierd severe headache a couple of days before that....my husband said i looked funny but had no clue what it was...my mother came in and immediately said I was having a stroke. I don't remember much but i'm home now and have not received a confirmed diagonsis from the doctor. they confirmed it was a stroke but cannot tell me why. I'm very grateful that i am ok except for a little pain here and there and general tiredness..... I thank God every day that I can see and touch my baby..... thank you for your post at least I know i'm not alone.

Anonymous said...

Hello, I had my 4th mild stroke in March. All have been from atrial fib, while on anticoagulants. Two of them occurred while hospitalized. The mild brain stem stroke has left me with difficulty chewing, swallowing, flucuating blood pressure, fevers, insomnia, fluctuating pulse, as well as the after effects of other mild strokes such as left sided weakness, r sided hearing loss, trouble finding words, short term memory problems, blurred vision and many other symptoms.
The neurologists, were not very helpful because they were "just mild". I was being labeled as a nutcase. Luckily,one of my daughters, a neuro nurse, suggested therapy. The occupational, speech and physical therapists saved me mentally.
Since we moved, I now have a new cardiologist who has been very helpful and a new opthamologist. They referred me to a hematologist to look for clotting disorders.
As women, we are not taken seriously when strokes and other vague symptoms occur. It is frustrating. I try to keep a sense of humor and take one day at a time.
I have 4 daughters. My second oldest called from college about 6 years ago, lying on the ground, unable to talk. She also had a "mild" stroke from a migraine gone bad. She has been left with a weak left hand and left side of face. She was misdiagnosed at the time because a ct did not show anything.She lost valuable time. The mri showed it months later. She just finished her residency and is a physician. This has been a learning experience for all of us.
I wish you the best. Thank you for listening. Kate

Wife said...

I am 5 weeks post subarachnoid hemorrage also known as a hemorragic stroke to the pons/brain stem area. I was lucky. I called 911 from my cell phone within one minute of the "pain" in the back of my head. Only now however I am finding I am not the same as before. I still feel dizzy, have major issues with balance and a constant headache. I am also super emotional. If you still monitor this blog, How are you now?

Unknown said...

Amazing women :) my husband age 33 had a massive pontine stroke in jan he was given 48 hours to live he also have a feeding tube in and a tracky he just couldnt do nuttin he went to a rahabe centre in april and he came home in july this monthhe now starting to talk dont use the feeding tube (peg) now and use a pallas stand aid we just praying now that he will walk agin so ya there is hope outthere

Anonymous said...

I am amazed at your story, and only wish I had known of you three years ago. I am currently 37 years old, and the fortunate stay-at-home mom of two young children. Just over 3 years ago, four days after the birth of my second child, I suffered a massive ischemic stroke - one my doctors assured me at the time would have killed or paralyzed most people. However, an hour later, no one would have known, to look at me, that I had even had a stroke, and I walked out of the hospital two days later. While that ended up being only the beginning (a few days later I had more strokes), my recovery has still been nothing short of miraculous.

Off and on over the past 3 years, in between physical and emotional recovery and being a stay-at-home mom, I have searched for other survivors similar to me, people with completely healthy backgrounds who were struck out of the blue. We are a rare breed. But finally, tonight, just as I started my own blog, I randomly did a google search, and your title of "I had a WHAT?!?!" hit home, because that was MY exact thought when the doctors told me about my stroke. So incredible to find another like me out there.

It is surreal and magical to read your story, and your goals, as we seem so similar. It would be great to communicate more with you about our mutual experiences, and perhaps combine our efforts to provide support to other survivors like us. You can check out the beginnings of my very very infant blog at strokesurvivingmom.wordpress.com, which, as I said, I just began tonight. I hope to hear from you, and wish you so much continued good health.

shE_drEamS_n_rEd said...

My first stroke was at 28 and the next a month ago at age 29. Misdiagnosed so lost almost whole rt cerebellum and part of brainstem, they thought first one (6 months later) that it was wallenberg syndrome. My doctors and I can't find out what is wrong.... I don't want to die! I will make out a living will soon to deny me food and water etc if can't communicate in any way.

Anonymous said...

Hi Shanna,

Thank you for posting your story. It is so motivational to me. I was a perfectly healthy 36 year old and had a stroke13 days ago. I have a newborn who was 5 weeks old at the time of my stroke and I am unable to take care of her right now. I am currently at inpatient rehab.Reading your story gives me hope....that I will recuperate and be able to go home to my family. Again, thank you for posting it! You are making a difference!

It Works said...

I am very thankful to have found your blog.I am 31 and mother of 3.I have been having the same symptoms you describe for about 2 weeks now.They are very scary but i listen to everyone else when they say its just part of the panic disorder you have.It may be but im really scraed and do not want to die.Unfortunately I no longer have health insurance so my back is against a wall as of now.

mari said...
This comment has been removed by a blog administrator.
juan.garcia010 said...

Im 28 years old and suffered my stroke 3 days ago. Im a healthy male and exercise frequently. I was home watching tv when my vision went double. It was very scary,but for months ive been waking up with tension headaches. I ignore the headacje being anything else other then a headache. As soon as my vision went crazy my left arm and foot went numb. Thankfully my family was home and was able to get their attention. I dont remember much of the ambulance ride but as soon as i got to the hospital i was sedated momentarily. When i open my eyes i was staring at a hug machine and felt as if nothing happened. The doctor ask how i felt and i responded normally to his and my surprise. They inject an anti clotting medicine called TPA tissue plasmatic something. The most important thing when having a stroke, is time. When i went numb i thought it was temporarily and didnt want to call the rescue. The doctor said that i had a clot artery in the back of my neck in the left side. If i wouldve waited 30 more minutes they wouldnt have been able to inject the TPA. Theres only a certain amount of time you can inject that medicine. Once again tisme is crucial. And dont ignore early signs. Its not normal to wake up with headaches every other day like i was. Thankfully i have no permanent damage and im leaving the hospital today,but my life couldve changed forever. The last thing that you expect at 28 is to have a stroke and i did. Go to your doctor and ask for mri ct scans and anything else. If your not happy you can go to different doctors. The same neuroogist that saved my life has a private practice and im going to follow up. Try to find. Neurologist that works in hospitals. They have more hands on experience and have seen many different cases. In my case the doctor said i was hes youngest patient ever with a non traumatic stroke. And im also the fastest to recover. Once again dont ignore anything out of theb ordinary. Our body causes pain for a reason. Go to your doctor and if you do have a stroke dont wait 1 minute. The faster you get to the hospital the less damage you will most likely have. I thank god and the doctors at palmetto hospital in hialeah florida.

PB said...

Hi Shana

So sorry to read about your story and the fact that you had to go through such a severe phase with the stroke.

Hope you're doing well now. Sending best thoughts and wishes from India :)


God bless!

P.S - Don't want to sound insensitive or anything, but if you could change your blog background anyhow to white instead of black, then I guess it would make reading it a lot easier. My eyes hurt a bit while reading your post :) Just thought I'd let you know.

Anonymous said...

I wanted to thank you for posting your story. A little over a week ago I went to the ER with a bad headache in the back of my head and neck, numbness on one side, and a loss of balance. The doctor dismissed my symptoms as a migraine and muscle strain and sent me home after a normal CT scan and blood work. The next day I still didn't feel right and was researching my symptoms when I cam across your blog post. It was your story that led me to see another doctor the day after being dismissed from the ER. That doctor ordered an MRI and MRA that found I had a vertebral artery dissection. I was sent back to the ER immediately and put on a heparin IV. I realize I'm very fortunate that it was discovered before I had a stroke, and I'm so grateful you had the courage to post your story and help save me from a worse outcome. Thank you so much and God bless you and your family.

Anonymous said...

My story matches yours. I would be forever greatful if you emailed me at ammurtha@gmail.com so that we could talk a little more? You are amazing.

stasiap said...

Thanks for sharing your story. I understand your feelings about taking time to smell the roses. I suffered 3 mild strokes from a VAD last October. I am still daily in rehab as i have not got full use of my left arm. But thankfully have regained the use of my left leg.
I take each day as it comes and are very thankful to be a live. I think having a positive attitude such as yours is the reason why i have recovered quite well.
Are you fully recovered now or do you still have some disabilities. Would love to hear from you as it has been a few years. My email address is stasiapeppas@gmail.com.

Thanks again for sharing your story :)

Unknown said...

I appear to be having Stroke Symptoms every single day of my life now. It has been progressive and Chronic b/c my Left Vertebral Artery has been pushing on my Medulla with each heart beat, the Dilochoectactic artery beats against the brainstem tissue and has shifted my Brainstem into the right side of my brain. Shana, if your around, feel free to email me at GARY1RN@YAHOO.COM I could sure use some support.. Here is my Youtube link https://www.youtube.com/watch?v=lDLbGyuzJLA&list=UUZCPk4e39pNcqEI-D0A3xNQ or Click Here

David said...

Similar to others, I am curious of your progress after 6 years. Its been 1 year for me.

Unknown said...

I was barely 35 when I had my stroke, I fell down the stairs at my apartment, felt confused but got up & left for work. I felt dizzy all day, had been having headaches since my birthday 4 days earlier. But I worked all day & joked about having fallen down the stairs cuz I was now walking with a limp that was noticeable. I went home that night & started laundry at our laundry room in the apts. Towards the end when I was ready to carry it all home, I noticed I couldn't hold on to the basket or get up the stairs. I waited for my bf to get home from work ... he took me to the ER because I thought my foot was broken and I was feeling these terrible and annoying electric shocks down my leg on my left side.

They eventually sent me home saying it was my blood sugar because I am Type 1 diabetic. Thing was my blood sugar at the time was 128 ... which isn't bad.

I went to the ER two more times over the next three days & my blood sugar was rising & my body was weaker & my speech was slurring. I feel like because I had no insurance they failed to do an MRI on me ... just sent me home saying to get my blood sugar down.

After 8 days,my Mom came home from vacation & drove over to take me to a free clinic. 8 days ... they saw me & sent me to hospital & gave me a pink slip to give them saying they would pay for everything. The hospital did an MRI immediately and said I had a massive stroke of my right brain stem.

It's 4 years later now & I'm far from where I was ... but my bf left me, I had to learn to dress myself, use a walker, get speech therapy, learn to climb stairs ... I lost my job, my car, and my life in a moment.

I'm happy now, lonely yes, but alive. I sit in my apt days on end without company except Mom who brings me dinner, because I now live alone & promised my doctors I would not use the stove anymore since I was living alone.

Long story, sorry. Every day is a battle we all need to fight. Life doesn't end, it just changes. No more rushing, we make ppl slow down a bit when they are with us. Keep going, always ... we are not defined by our stroke.

Ryan Clark said...

Hi there,

My name is Ryan, I'm 34 and have always been in great health both physically and with nutrition. I'm into my sixth week since my Vertebral Artery Dissection, which led to a blood clot and stroke. It's been a wild ride to say the least. My dissection was likely caused by straining at the gym. I don't recall pushing myself too hard but I suppose it doesn't really matter. I've noticed that the battle to come back or to get back to "normal" (if I ever was, ha) has been a serious mental game. I've already in the gym for the last four weeks working on my PT and trying to get my strength and stamina back but nowhere near what it was. What's the end game here? The doctors don't seem to have a straight answer and I'm so tired of being tired. What are some tips and tricks people have used. I'm pretty motivated and try to stay positive but things can get gloomy now and again. Just thankful to be here and know others have experienced this rare scenario (VAD/CAD that is). Hope all is well Ryan

Bonnie Gingerelli said...

Hi Shanna:
Your story was inspirational to my husband who suffered a stroke following a motorcycle accident in 2007. Unfortunately the doctors did not realize it because he was already in a coma so it went untreated for several days. He is so very bitter at "those medical people" because if he had been treated especially physically he would not be wheelchair bound. This is a direct result from the stoke and not the accident. Thank you. I hope things are continuing to improve for you after all these years.

Anonymous said...

Thank you for sharing your story and I hope your recovery is going well. I also had a stroke (last year) and I was 28 at the time. I went to the hospital and was dismissed with Tylenol. I went back again that night because my headache was so severe and was admitted to the emergency room and ultimately diagnosed via a MRI. The cause is still unknown but I echo many of your sentiments. A stroke can happen to anyone and it has a potentially lifelong impact, so take the warning signs seriously.

Unknown said...

Shana, thank you for sharing your story. I just returned home from the hospital after watching a family member suffer a massive stroke. She was not as fortunate as you. I read your article because I wanted to know if she can hear us, see us, etc. I know that each person is different and there are so many different variables. On another note, I realize that you did have good care but I cannot help ask this question, did your doctors ever consider that you may have vascular ehlers danlos syndrome (VEDS)? It takes many young lives each year with spontaneous organ or vascular rupture. This is not something that many doctors suspect either. Just like a 30 or 40 something year old having a stroke. I hope you read this and read up on VEDS. I, myself have EDS. I hope you stay well.

Anonymous said...

Thank you Shana for your very informative post and story of survival too. I had two strokes just four weeks ago and I am okay. They were both in my right hemisphere - Occipital and the other one was posterior of my thalamus. I have dodged a missile that I am not more affected. When I attended Accident and Emergency (ER) they couldn't call it a stroke as I passed every neurological test and sent me home that afternoon. Then at my GP's surgery the next morning, I passed his tests too and he called it a migraine aura with an incomplete Circle of Willis. CT scan showed nothing remarkable. It was 6 days later after the strokes that an MRI confirmed two ischemic infarcts that are not diffuse. When they informed me, I went in to shock. Since then, I have passed all tests that the Speech Pathologists, Neurologists, Physiotherapists and Occupational Therapists have put me through. Still I have some lingering numbness down my left peripheril side that has graduated to tingling of late - I hope this is a sign of improvement. Looking up my symptoms brought me to your blog entry.
My vision is fine - just a little bit of blurriness in the corner of my left eye, but vastly improved and again no other neurological damage. Medical staff think that my strokes were caused by an atrial flutter that I can have from time to time - usually brought on by stress. I am having another neurological test tomorrow to sign me off to return to driving. We are too young to have strokes and I never thought it would happen to me. Your story of surviving your stroke is remarkable and inspiring :) Tricia, Australia

Unknown said...

Hi my name is Christina. My daughter Jennifer, who just turned 28, had an ischemic stroke three weeks ago from a migraine. She had been perfectly fine all day, and then around 4 in the afternoon, she came into my bedroom and started to try and tell me that something was weird with her, but after saying, "Mama, I don't feel..." she started talking gibberish. I was the one who called 911 when my father had a stoke over ten years before and so as soon as I heard her talking that way, I pushed her down on my bed and ran to the head of our stairs and yelled down for someone to call 911 - that Jenny was having a stroke. Fortunately there were many people in the house that day, she arrived at the hospital within 45 minutes of the stroke. However, no one thought it was a stroke! She started being able to talk a little bit once she arrived at the hospital, and nothing was wrong with her body. They took a cat scan and it was negative for stroke. A neurologist there said she was having a migraine and that sometimes migraines can look like strokes, so I was temporarily relieved. But as the evening went on, her speech got worse and so did her headache. They decided to transfer her to our hospital and admit her for testing. After getting her situated and asleep on narcotics for her headache/migraine, I went home and told my family what the Dr had said, but that I was concerned that it was still a stroke, because she wasn't getting better. My family told me that I was being negative and she would be fine in the morning. On our way to the hospital with my Bro-in-law driving (thank God), I received a call from the new neurologist at our hospital, saying that they'd just finished the MRI and she had indeed had a large stoke and her prognosis was "guarded". I flipped out. I knew all along but no one had believed me and our opportunity had passed. Move ahead to today. Miraculously, my daughter had made astounding progress. She can talk again, almost normally (she has always been very articulate so she still had some improvement to go), read again almost to her normal level, write and do math. She still has trouble with tense endings and some syntax, but I believe she will completely recover. The Drs are amazed at how well she is doing. I believe it is a miracle (so many people have been praying for her), combined with her age. I am so thankful (for the first time) that I was unemployed so I was home when it happened. I am so thankful that she was still at home - she was due to leave in two days for her job. I can't bear to think about what could have happened if she were in some other state when it occurred. Anyway, I just wanted to share our story - which is still ongoing. I don't know why Drs don't do MRIs right away when a person presents stroke-like symptoms. It could mean all the difference in the world. At this point her Dr is not entirely sure why this happened to her. She does get uncommon migraines, complete with auras and vision issues when she gets migraines. She also had high cholesterol and was on birth control pills for her periods. She now takes statins for the cholesterol and is off all hormones for the rest of her life. But all they can do for the migraines is to try and keep them from happening ever again, and we have no idea how successful that will be. So far she's had no migraine since the stroke. Thank you for allowing me to write our story down with yours. I was encouraged by reading yours. And I pray that you continue to improve daily. God bless you! Christina

Alethea said...

Thank you. Be well and continue to heal. Wondered when I would feel better and off plavix. When would the numbness 3mos in go away. But feel blessed, enjoy each day, not stress out and send love to all.

Anonymous said...

Thank you for sharing your story. I had a stroke recently at age 26, because of my age it took 3 weeks to diagnose. The drs also put me through unnecessary tests that carry risks for stroke patients and as such i then had a second stroke, which nobody noticed or diagnosed for weeks. I grew up suffering from severe migraines with visual disturbances but never expected it to lead to this. I feel very alone in my recovery and forums like this are a huge comfort. My world collapsed after getting out hospital, losing my job, friends and apartment. I really appreciate you sharing what happened to you and creating this great place for people to connect. I wish you and everyone all the best in your recovery.

carlos said...

Hey, Do you Remember what type of antibiotic did you take?

Anonymous said...

Shanna,
Your symptoms were classic and should not have been missed. They would not have been missed if main stream medical treated people like individuals instead of statistical probabilities. I am 57 and recently had a rare type of stroke not related to high BP, cholesterol, or heart problems. One day while shopping, I suddenly got dizzy, tingling all over, and felt if I took a step I would fall down. I could control my body but with effort. No one sidedness to the problems and speech was not effected. Headache was mild only. Because of my age emergency room people did not miss a small ischemic stroke deep in my cerebellum but they would have without the MRI. I had to bring up the possibility of VAD after consulting Dr. Google and weeks later testing is still ongoing. I am overweight but very active and was going to the gym a couple times a week. I feel like it is being assumed by everyone that the stroke is because I am overweight (5' 9" 210 lbs). All any medical people tell me is to exercise more. Hard to argue with that but I would feel more comfortable exercising if they would eliminate possible VAD related type issues. It is hard to get back to your life without knowing what caused the stroke in the first place. I fear some type of movement will cause cerebral artery impingement because I have partially collapsed vertebrate in my neck and have had severe neck and upper back pain for over 10 years that no doctor has the time or insurance ok to try to track down. Post stroke I get panic attacks now, when I never had them before, every time I feel funny. There is a pulsing sensation in my neck and head at the base of my skull that I have had to convince myself is not another stroke coming on and my vision is more blurry than usual. I am still slightly dizzy. I am very fortunate that I have no obvious deficits but feel like a ticking time bomb. The literature regarding strokes states small strokes are frequently followed by larger ones. It is frustrating to me that there seems to be no hurry to try to figure out the cause of the problem when the 'big' stroke is likely to leave me with deficits.

Margot said...

Thank you so much for sharing my dear! My professor recently had a stroke. He is also a young stroke survivor. He felt dizzy at work so he went to the nurse on the campus and they told him his blood pressure was sky high. He wanted to go home and sleep it off but his daughter noticed signs his brain was beginning to malfunction and forced him to go to the ER. At the ER they told him he had a clot causing the stroke due to a blood vessel being damaged from his diabetes. It was the clot that was causing his high blood pressure and if he had not gone for help he would have died in minutes. So you are right about the need for people to know the signs and get help even if the person having the stroke doesn't think they need help. The stroke caused damage to his left thalamus so he has sensory issues and becomes very dizzy. One moment he will look normal as if he never had the stroke, the next moment his eyes will roll back and side to side from the dizziness and he'll become pale. It's one of the most scary things I have ever seen! It was AWFUL to watch him struggle! If anybody knows why he gets dizzy or if there is something that can help with his dizzy spells let me know? I desperately want to help him! I was looking for insights into why he gets dizzy from the thalamus stroke when I came across your post. Just wow! You are incredibility lucky to have survived your stroke! You are blessed to be alive and I hope and pray for your brain to recover and for you to gain more function back as time passes. If you are interested in stories of young stroke survivors please check out the book "True Strength" by Kevin Sorbo. Kevin Sorbo survived 3 strokes at age 38 and the book chronicles the experience of the strokes and his recovery.
I have brain damage myself from Cerebral Palsy which is a form of brain injury that happens in utero or during or slightly after birth. Some of the symptoms and physiological effects of Cerebral Palsy are very similar to stroke. I make films about characters with Cerebral Palsy and other disabilities here http://cripvideoproductions.com and here http://cripvideoproductions.tumblr.com in case you are interested. My films called "Drama Sighted" "Only Those Who Limp Allowed" and "Crips Not Creeps" can be found on youtube by searching for the film titles in the youtube search engine. All my best to you!

Chief said...

Shana,

I to just found out I had a stroke on December 23rd 2015. I was working 2 jobs at Dulles airport hight stress but what Doctors feel caused the stroke on the right side of my brain that has left me very numb on the left side, face , head, legs, etc was A-Fib. It was first seen 3 years ago when I went for a stress test in Manassas for duty as an EMT in Prince William County. I ignored the doctors advice of needing a cardiologists and needing cardiac ablation to reset my heart into sinus rhythem. So after 3 years of living with uncorrected A-Fib as a rescue worker as an EMT, as well as an ER Tech at Mary Washington Hospital, It struck on November 12, 2015 at the midfield terminal at Dulles Airport. I dropped my soup and my left hand stopped working, I became confused trying to get back to my office having tried to go through a wall where there was no door. Finished my shift then drove to a hotel in Chantilly where I dropped my clothes and baggage several times from my car to the front desk. THe manager has known me for a year and a half he said , LOOKS LIKE YOU WERE SLEEPWALKING, I just mumbled words when he asked me if I was ok. The next day I was up at 3 AM at work at 4 AM and on the way home at 1.00 PM fell asleep in traffic on RT 29 and ran into the back of a UPS tractor trailer.Minor damage to car driver of truck didn't get out. Worked for 6 weeks always tired and out of breath and still very numb on left side. My son came home on December 21 he observed my breathing at Home Depot (out of breath not doing much at all) So on the 23rd I went to doctor to get Singular refilled thinking it was asthma . Doctor heard my story and in came EKG showing I was in A-Fib immediatly to the hospital, spent 3 days including Christmas Eve and Christmas Day. Now comes the part I want to stress I am older 55 however a complete gym nut. I weigh 200 pounds, don't drink, don't smoke, bp always 120/80 or lower, no chloresterol issues. Now the sad part , I thought because I was a bull in the gym bench press 190 pounds 37 times between 2 sets, then on to 225 pounds for 15 more pushes, I was invincible and having medical background it would never happen to me. Because I did not go to the hospital until 6 weeks post stroke I was not given clot busting drugs, if I had just owned up to what was happening because I did know, and called 911 maybe I would not be numb today. It has been about 8 weeks and no improvement with the numbness. I am on blood thinners, bp meds and asprin therapy. In 2 weeks they will attempt cardio conversion shocking my heart to stop it and try and sent into normal sinus rhytem it may work and may not, then ablation would be next. So if you know ANYONE or anyone reads this that has been diagnosed with A-Fib take it very serious. It can and will cause strokes. I like you have never taken life for granted performing rescue work and working in the ER I don't take a breath for granted. I know I an very fortunate to have survived this event, I had no motor damage just sensory. I have taken time off from work and am focusing on what is really important in life , I have had several people in public at stores etc, ask how are you today, my response is I am doing GREAT i had a stroke and survived. Have a wonderful 2016.

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Eddie G said...

My story is apparently too long (but it won't tell me by how much). Any idea how I can share?

Unknown said...
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msdad@rvdads.com\ said...

Ok, I figure I'll post my story in two parts. Here is part one:
OMG, I have never heard a story so closely mimic my own. My journey started on July 27, 2010. I had a massive headache that would not go away, no what I took, even migraine meds (which I took because I was nauseated, etc). We live in St Augustine, FL at the time in our motorhome. My husband was in the living area up front doing some work and I had been lying in the bedroom in the back, in the dark trying to make the headache go away. Eventually, after a few hours, I crawled to the front of the motorhome (I was unable to walk by this point) where my husband picked me up (I was not a small man) and put me in the car. He asked which ER I wanted to go and I said St Augustine because I thought it was a bit closer and would be less crowded. When we got there, in addition to the headache, nausea, vomiting, vertigo, double vision and inability to even stand, my heart was also in atrial fibrillation. They immediately took to the back, started an IV, did an EKG and started a heparin drip (to prevent strokes from the a-fib...HA!). Ultimately, I was transferred to a Med/Surg unit where the attending physician came in, examined me and pronounced my diagnosis as labrynthitis (a middle ear infection). She even had an ENT come in the next who "verified" her diagnosis. I kept asking for a neurological exam (just having a feeling) and she kept refusing. By this point I had noticed that I had no sensation of temperature or superficial pain on the right side of my body, but deep pain that started in my right buttock and extended all the way down the leg. So I started insisting they transfer me to another hospital. They refused. Finally, on the 8th day, she apparently decided I was "cured" and discharged me.

msdad@rvdads.com\ said...

Part two:
That was on a Wednesday. Thursday, I went and saw my longtime primary care Dr who knew this was no labrynthitis and wanted me to see a neurologist ASAP. Well, as it turns out, my husband was an IT consultant (primarily medical) and one of his clients was a Mayo trained ENT/Neurotologist who is considered one of the best in the southeast US, if not the whole country. It normally takes months to ge in to see Dr Green. Sean (my husband) was able to get me in the next day. He examined me thoroughly, then said that he wasn't 100% sure what was going on, but knew it was neurological. He excused himself to make a phone call. About 15 minutes later, he came back into the exam room and directed us to go directly to Baptist Medical Center in downtown Jacksonville, not to stop for food or clothes, that they were waiting for me in the ER and I would be direct-admitted. It took a couple of hours to get into the back because Baptist is Jacksonville's Level 2 Trauma Center and helicopters and rescue squads kept coming in and taking precedence over me. Once I got to the back, they started an IV, did a quick chest x-ray and sent me up to the Neuro floor. Within five minutes, the Chief of Neurology for the entire Baptist health system was standing beside me. He stayed for the next 45 minutes explaining what he thought was going on. Well, because the first hospital had put me on the heparin, there were no clots showing up on the CTs and MRIs so they had to test me for everything...Lyme disease, MS, Toxoplasmosis...they even did a lumbar puncture. Everything came back negative. Finally they did an arteriogram, which showed the VAD (which was now occluded and had had already formed a collateral artery around it (this was 17 days after it all started). So the diagnosis was not clear: Wallenberg's Syndrome. They still don't know what caused the VAD and I am Plavix and full-strength aspirin for life. I still have a nystagmus in my left eye, balance issues (which swing wildly in their severity) and the pain. I had a piriformis release surgery in August 2015 and had no pain for several months but is now back with a vengeance. So we're looking at a Spinal Cord Stimulator at this point. So my life is once again in limbo. But at least I am alive to tell my story. Most people don't survive brain stem strokes. I am very fortunate. Do you happen to know if there is a Facebook group for Wallenberg's survivors? I can't find one but am more than willing to start one.

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Anonymous said...

I was 18 when I had my stroke in 2015. I had my stroke February 2015 but I didn't find out that I had a stroke until I had an MRI in June 2015. It took 4 months for doctors to realize I had a stroke! Even though my right arm was numb and tingling, I felt like I was outside of my own body, I couldn't speak, my head was throbbing, and I couldn't think straight, the doctor and neurologist both told me it was just a migraine. I'm lucky to be alive today because I obviously didn't get proper stroke treatment. If it wasn't for my mom bringing me back to the hospital after they told me to go home and trying to convince them that it was more serious than a migraine then I don't know where I'd be today.

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Natural Herbs Clinic said...
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Anonymous said...

Shana,

You are my hero. My story is similar to yours. However I was lucky. I'm stil light headed, with some days being untoleroble. A bit of trouble in swallowing and by being focused I'm avoiding choking. I walk, I excercise ( a must) and I thank the Lord for have spared my life. I'm not a youngester, I do get fatigued and have some episodes of being depressed. No more after reading your story, I promise. All my life I have been active, watched what I eat, no smoking, no alcohol. The night before went to the gym, and everything was ok. Next morning it happened. The symptoms were strange for me. I seeked help not once but twice. I showed strength and that confused the doctors. Cat scan show nothing unusual not once but twice. On the third day the ER Doctor was not convinced that a stroke was not the problem. He ordered an MRI and sure enough I had suffered an infarct around the stem, known as a pontine. This is mentioned to be one of the worst stroke that anyone can survive. To day I'm grateful that I can do a lot cautiously. I survived the impossible. Your episode is giving me psycologicall strength. Someone told me that I'll never be like before. It will have to be the " new normal" in me. God bless you.
Thank you for sharing your unbelievable story.

Chuck


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Sherry said...

Hello Shannon I came across your story your an amazing person to live through the dangerous sickness. I had a really bad headache last night and this morning I woke up with my right side of my head and neck on pain aND stiffness. I scared to go to the doctors and I don't know what it could be.

Solution To Health Problems said...
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Anonymous said...

Hi Shannon,
I know this was posted quite some time and I'm happy to hear things turned out well for you and that you further educated yourself on strokes. I'm a retired ER/ critical care nurse and was quite surprised they didn't figure out sooner you had a stroke considering you had a 8 mo old baby; it certainly is something they should've considered since you had a child under one. It's so important that all people educate themselves on any symptoms or illnesses they have and since all have access to internet if not at home then your public library you have all info Drs & nurses have at your fingertips. No one health care provider is able to know every symptom of every illness and if you educate yourself you'll know appropriate questions to ask. If they're unwilling to listen it's time for a new dr.

Anonymous said...

Amazing story! Thank you so much! You really helped my friend who survived a similar stroke! I thank God you and he both lived! I pray you have recovered more by now.

On a side note, If any of the stroke survivors here are interested a short independent film production group in Brooklyn NYC is looking for a 30 to 40 something year old actor with a mild stroke to play a stroke survivor who is a well respected college professor here at this link http://cripvideoproductions.tumblr.com/post/157585455766/a-stroke-of-endurance-casting-call The actors must be in Brooklyn NYC area and willing to work Pro Bono. Email them ASAP if interested! To email them see here at this link http://cripvideoproductions.com/contact.php

Lauren Maria said...

I thank you for posting this.. I just had a stroke due to vertebral artery dissection and it was almost symptom for symptom except for the swallowing.. that had to have been terrifying. i know my experience was eye opening.... its lonely when you are trying to heal.. but you have no support groups your age... even though it's more common that we think.. it's still difficult to find young people to talk to and share experiences with. I'm so glad you're ok. Thank you again for your blog.

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Anonymous said...

Dear Shana thank you so much for posting this story. Its truly an amazing story and you came out alive. That is all that matters. I cant help but rant on the incompetence of hospital staff. They should have done an MRI to begin with when you first went to the ER. I cant believe they would say it was stress or a panic attack. That is them being LAZY. Unless your unconscious and on a stretcher then the diagnosis is panic attacks. Its ridiculous. Anyway thank you love you love your smile ;)

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Unknown said...

Nice post! thanks for sharing this information..
Stroke is a disease caused by a brain stain that results in paralysis, coma or unconsciousness, blindness and other problems that affect the mind and body.
common symptoms of stroke are:
- numbness or weakness in the hands or feet
- sudden blindness
- it's hard to speak properly
- the next symptom is arm weakness.
to know whether the patient has arm weakness, he will be asked to raise both arms and when one arm drifts downward, then he is positive for the second symptom.
- David Cromwell MD -

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Crip Video Productions said...

Thank you so much for sharing your story! I think I commented here a few years ago. I wanted to tell you I have recently created a film about a stroke survivor like you. The film is called "A Stroke Of Endurance" about a college student named Ava who must deal with the ramifications when her professor has a stroke that leaves him disabled, and how her professor adapts after the stroke.
Link to the film is here
http://cripvideoproductions.com/astrokeofendurance.php

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Unknown said...

I was very moved by your story, thank God you survived.It's sad to say how many times stroke symptoms are often overlooked, your courage.God bless you

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