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Old 06-25-2010, 03:22 PM   #1
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34 yr old just had stroke, doctors are stumped

I'm a 34 year old female, healthy weight, cholesterol, not taking BP, don't drink, don't do drugs, eat healthy, etc. Well I had a stroke and come to find out my left cartoid artery in my neck is 100% blocked and there's a problem with the right one as well, it's about 50% blocked. It's not plaque buildup, it's a clot but the doctors can't agree as to exactly what's going on. Some think I have a rare tissue disorder, others don't, some think I need surgery, others think I need meds - and even with the meds they can't decide on how long I'll have to be on blood thinners. I live in Southern California so thankfully we have a lot of large med centers here to get good second opinions from. I'm seeing a different vascular surgeon on Wed of this coming week.

I was just released from the hospital recently and things have been hard. I've regained most of of my feeling on my right side and my speech is back to normal but there are some things that are still off and it's frustrating. And I feel like I'm so young there's no one I know who can relate to the stress of all of this. The doctors discharged me but were nervous about me walking around with the way my arteries are and the fact that I don't have a clear diagnosis as to what caused them to become to so blocked, and of course that's making me nervous. I don't ever want to go through a stroke again. I live alone and it was one of the most scary things thats ever happened to me. I woke up having the stroke at about 5am. I'm sure a lot of people here can relate to some stuff I just said. I just want to say that normally my thoughts are clear and concise and with more info, and normally didnd't have to work as hard to type but i'm makin gtypeos everywhere as i write this. i have my masters in public policy and was hoping to go back this fall for my masters in social work but the way i am now i don't think that will happen and that's hard to accept.

I just wanted to introduce myself on this board and say a little about my story... I'll be around, seeing as all of this is just starting and I have a long road ahead. Thanks for listening!
Lizzy

Last edited by lizzy76; 06-25-2010 at 03:38 PM. Reason: typo

 
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Old 06-25-2010, 05:29 PM   #2
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Re: 34 yr old just had stroke, doctors are stumped

Hi Lizzy!

I can relate to much of what you say. I too had a stroke, but no one could tell me why since the drs. could find absolutely nothing wrong with me.

I hope the second opinion can give you a clear course of treatment, even if they can't tell you why you have this condition. Sometimes there just is no explanation.

Like you, I live alone, had never been sick and am an independant person and this threw me for a loop.

Also like you, my right side was affected. I just want to tell you to have patience. With physiotherapy my recovery took nearly 3 months, but I feel I'm now nearly 100% recovered and hope the same will happen for you.

Please don't think you won't be back to your studies in the fall! You must be positive and this is a goal that will motivate you to work harder, just as wanting to drive my car again motivated me. You're young and that's on your side.

For about a month after my stroke, I couldn't type without making a million mistakes due to my right arm and hand being numb. Keep typing and it will come back!

Your priority is getting the blockage or clot cleared up. Please let us know what the doctor says on Wednesday. Don't despair. I know you've had a bad shock and I"m not saying it's so easy. I struggled a lot, was dizzy, tripped and fell a few times, hurting myself quite badly. It was upsetting and frustrating, but working on recovery asap is the only way to go.

I wish you luck!

 
Old 06-25-2010, 06:37 PM   #3
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Re: 34 yr old just had stroke, doctors are stumped

Quote:
Originally Posted by lizzy76 View Post
I'm a 34 year old female, healthy weight, cholesterol, not taking BP, don't drink, don't do drugs, eat healthy, etc. Well I had a stroke and come to find out my left cartoid artery in my neck is 100% blocked and there's a problem with the right one as well, it's about 50% blocked. It's not plaque buildup, it's a clot but the doctors can't agree as to exactly what's going on. Some think I have a rare tissue disorder, others don't, some think I need surgery, others think I need meds - and even with the meds they can't decide on how long I'll have to be on blood thinners. I live in Southern California so thankfully we have a lot of large med centers here to get good second opinions from. I'm seeing a different vascular surgeon on Wed of this coming week.

I was just released from the hospital recently and things have been hard. I've regained most of of my feeling on my right side and my speech is back to normal but there are some things that are still off and it's frustrating. And I feel like I'm so young there's no one I know who can relate to the stress of all of this. The doctors discharged me but were nervous about me walking around with the way my arteries are and the fact that I don't have a clear diagnosis as to what caused them to become to so blocked, and of course that's making me nervous. I don't ever want to go through a stroke again. I live alone and it was one of the most scary things thats ever happened to me. I woke up having the stroke at about 5am. I'm sure a lot of people here can relate to some stuff I just said. I just want to say that normally my thoughts are clear and concise and with more info, and normally didnd't have to work as hard to type but i'm makin gtypeos everywhere as i write this. i have my masters in public policy and was hoping to go back this fall for my masters in social work but the way i am now i don't think that will happen and that's hard to accept.

I just wanted to introduce myself on this board and say a little about my story... I'll be around, seeing as all of this is just starting and I have a long road ahead. Thanks for listening!
Lizzy
Hello Lizzy,
I am sorry you feel scared but I know that you are. You have friends here and know how you feel. Just the fact that you are here and writing my not sound as bad as you think. It took me a month to start reading again and writing and i stilll don't write well

I have found that having a stroke is not like having a broken arm. The doctors I had told me that a stroke is a mystery and they really don't know at times what to do. I am sorry you are alone and scared. everything will get better in time. Please don't worry your typing and I know that you write, but after a stroke it may not look good to you, but I know every word. If you need us to talk, don't worry about your grammer we all struggle and it can take time. but if you feel you are scared, just write it done quick. we don't care about typing skills.

If you just had a stroke, you are doing good. It is a weird thing but we here know how you feel. So write here and we all read every post.

We care lots, I promise.

Just don't worry and I know that sounds silly now, but try not to. you will be ok and we are here if you need to talk.
God Bless you
Tim

 
Old 06-25-2010, 06:41 PM   #4
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Re: 34 yr old just had stroke, doctors are stumped

Most definately agree to get the current clot and immediate health issues focused on...once that is straightened out, you can refocus and recouping from the stroke. I had a stroke during brain surgery when I was only 22years old, I was paralyzed on my left side. It took a few months to get the basics back, a year or two for finer things, and a few years for the last quirks worked out. Acupuncture helped w/ some of the sensations. But now I'm 32 and prob 95% all me again, no one would know. I'd gone back to college a year after the ordeal and made straight A's and now have a successful career in Corp Finance......don't give up, be patient and just give yourself lots of love!

 
Old 06-25-2010, 11:42 PM   #5
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Re: 34 yr old just had stroke, doctors are stumped

Hi Lizzy,

I think we all agree on the scary part...the scariest event in our lives. It must be additionally frightening not to have an exact cause...how do you fight the unknown ? I hope your appointment with the next vascular surgeon will clear things up. I also live in Southern California, and sometimes forget how lucky we are to have access to specialists.

It might be surprising how many of the stroke survivors that meet here are like you... young, fit, and right in the middle of busy lives...holding important places in families, businesses, and never anticipating a life changing event that happens in one instant!

I remember how hard it was to simply think. The typing was so difficult, but I credit many hours of trying to type a paragraph, only to have it make no sense...arrrg I still have certain words that I always misspell,,,becasue is one of them.

Looking forward to getting to know you Lizzy...
Janet

 
Old 06-26-2010, 07:34 AM   #6
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Re: 34 yr old just had stroke, doctors are stumped

Quote:
words that I always misspell,,,becasue is one of them.
Don't worry Janet! For some reason everybody makes that typo!

 
Old 06-26-2010, 07:55 AM   #7
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Re: 34 yr old just had stroke, doctors are stumped

I was going to type more but i'll have ot wait ofr later. i just wanted to say to writeleft that i too live in san diego! where have you received your treatmemtn? i originally was taken to scripps mercy and i'm getting a second opinion from ucsd next week. i wish they had just taken me to uscd first off but they said a stroke code has to go to the closest hospital. although since you live in san diego you know that scripps mercy and ucsd hillcrest are like right down the road from each other so i don't understand that one. oh well.

thank you all for replying.... i''lll be back later today to werite more but i just wantedto say thanks and pass along that message to writeleft!
Lizzy

 
Old 06-26-2010, 02:24 PM   #8
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Re: 34 yr old just had stroke, doctors are stumped

Lizzy,

I go to Scripps Memorial, on Genessee. I now have several doctors there, and it is easier to keep all my doctors together, and they also handle trauma. I was brought there first, because my strokes happened while I was snorkeling in La Jolla Cove, and Scripps was the closest.

I am now going to UCSD Medical Center too, in Hillcrest for my womens health issues (endometriosis). My first visit was two weeks ago, and I was so impressed with the women's group, but I passed out during the appointment and got sent the the ER...very impressive too. UCSD is a great hospital, but it is not as close to me as Scripps...I live in Clairemont, and Scripps is 7 minutes away. I also have kidney failure, and understand that Sharp is the place for kidney transplant....but my nephrologist is at Scripps! Crazy!

We are very lucky to have great medical services, and I think you will love UCSD Medical center, especially after Mercy-yikes that place is old! Maybe we can meet one day.

 
Old 06-26-2010, 02:44 PM   #9
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Re: 34 yr old just had stroke, doctors are stumped

Writeleft, you are so right - Scripps MErcy is SO old!! I live in North Park and wanted to go to Sharp b/c one of my docs (my favorite doc) is wiht Sharp but they said with a stroke code they have to go to the closest. I still don't know why they didn't at least take me to UCSD instead considering they have a a stroke center but maybe they were full or soemthing. Eiether way, I'll be seeing someone from there next week so hopefully it'll all work out. Just the long way haha. i'm goin gto ask the vascular surgeon for a referral to a neuro in the stroke clinic b/c i don't have a neuro right now and think i need one? not sure - any thoughts on that? oh by the way, now that Sharp Memorial is done remodeling all of their rooms are rpivate anad really nice - tjhe whole hospital is really nice now actually, even the ER. i was just there for surgery a couple of months ago and it would have been nice to go back, if just for the nice private room haha.

i'm glaad you are havin ga good experirence at ucsd. i've heard good things about them and read their website on stroke center and vascular stuff and it looks reawlly ahead of the game. i too had a urologist/nephrologist out of scripps but he moved his practice back to texas about a year ago but it's not that big of a deal... i just get a lot of kidney stones and have needed a lot of stends over the years - nothings as serios as what you're going thoruhg. wow. i'm trying to read up on everyone and their storeis and i'm impressed with what you've been torugh and how your're still here fighting and doin gmuch better! wow!

do you go to any support groups or anytyhing? i have a lot of friens and support in san diego but none of my friends have had to deal with any major medical problmes seeing as we're all in our mid 30's right now. i feel alone even though i have a lot of support if that makes sense. despiet the physical stuff i'm tryin gto overcome - and i'm doin ga lot better - that whole incidnet was just scary b/c i live alone and woke up in the middle of a stroke. i keep replaying that night/morning in my mind andd wonderin gwhat i should have done differently - and there were thins i should have done differently! but that's the past and we can only move forward and change our tomorrows so that's what i'm tryin gto focus on right now.

it would be cool to meet up at some poi;nt. sounds like we're not too far from each other, espeically if you're usin g UCSD hillcrest as well. apparantly the vascular clinic is only open to patients on wednesdays so i feel lucky to have been able to get an "urgent, next available appt" for this coming wed! otherwise they were tryin gto give me an appt for sometime in mid july. i kind of went off on the guy telling him what happened and how they still don't know what to do with me and i really need to see someone assap.

well take care everyone - like i said i'm tryin gto learn everyone's story here. everyone is so different in age and experiences and it's just aamazing!

lizzy

 
Old 06-26-2010, 05:04 PM   #10
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Re: 34 yr old just had stroke, doctors are stumped

It's funny, having a hospital comparison conversation! I am with you on Sharp's. The new remodel is beautiful, and I was actually born there when it was our in the middle of timbleweeds, and canyon. (1960) I had a procedure in the basement of Mercy, and that freaked me out enough to never want to go there again.

You will probably fall in love with everyone here, we all do. Everyone has an amazing story, and just as different as we all are, our strokes are a special bond. It is unique, and although I think we all have some understanding from our friend and families...they can only understand so much.

 
Old 08-07-2011, 12:08 PM   #11
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Re: 34 yr old just had stroke, doctors are stumped

I am a friend of a 34 year old that suffered a stroke in February, or so they think. Every dr. that comes in says something different. Any advice on using a hospital advocate. We had a hematologist come in and raise blood pressure, take away therapy and put on intense blood thinners.. 12 hours later the neurologist came in and said. who ordered this and reversed everything. neither has given her a diagnosis and her paralysis is getting worse

 
Old 08-07-2011, 09:25 PM   #12
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Re: 34 yr old just had stroke, doctors are stumped

Hi Teresa Murphy,

We would be very happy to help in any way we can. To best do so, would you please start a new thread (there is a button to do so "new thread", on the top left). That way you will have your own place for us to introduce yourself (again, sorry), and we can all both introduce ourselves and everyone will know just where to go to respond to your friends story. If you need help to do that, please just ask, and we will be glad to walk you through it step by step. thanks, and we look forward to learning all about your friends stroke, and you as well.

Janet

Last edited by writeleft; 08-07-2011 at 09:26 PM.

 
Old 08-08-2011, 01:57 PM   #13
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Re: 34 yr old just had stroke, doctors are stumped

hey there... believe me there are those of us that get it. I live alone in a 2-story house in a city, ALL alone. I walked into work and had a stroke... just like that... I have to either pay someone or do everything myself. But I'm getting better every day and you will too. To say don't be afraid is stupid, of course you're afraid, but being brave is doing what with have to IN SPITE OF the fear, not without it. Take it one day at a time, do what you can, what you can't doesn't get done. Don't sweat the small stuff... and yes, the little things can make us crazy. I don't have the energy to screw in curtain rods in my new house and hang my curtains... guess what... they'll sit in the chair until I do!

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