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ufusco

Brain Stem Stroke Survivor

42 posts in this topic

3 hours ago, 2Fight said:

Ufusco,

 

The high BP is not from the endovascular coiling for the rupture.  My Neurosurgeon told me that with SAH bleeds, there have been cases of high BP.  The medical community just does not know why.

 

As you can already tell, your post really intrigue me as it was the exact territory as myself - VA-PICA -> Lateral Medula - PICA territory of the Cerebellum.  My Neurologist mentioned Wallenberg's syndrome to me and mentioned that it is one of brainstem strokes that has good prognosis for recovery.  He told me that it was discovered over 100 years ago.  I found the description in my Grandfather's Medical Books published in 1920s.  It is considered a rare disease.  If you read case studies, it is exactly how you got it with a blocked small vessel.

 

You mentioned that you are interested in changing your diet.  A Neuroscience Professor friend of mine at Stanford forwarded this paper to me.  His interest is stroke recovery at a bio molecular level with Omega 3 diet.   https://www.ncbi.nlm.nih.gov/pubmed/25771800  To be honest, I only understand only parts of the paper.  I just need to sit down with my friend when he has time.  The other paper that you may be interested is this one. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4670869/  My Neurosurgeon strongly told me to exercise.  These two papers are very recent.  In the past 3-4 years, researchers are finding major finding in Neuroscience and Neurology.  I am lucky that I live in the Bay Area with access to top Neurologist in the country from academic hospitals at Stanford and UCSF.

 

It is frustrating for me that just a minor stroke in my brainstem still causes problems even after 3 years.

You're a great resource thank you for providing such interesting information. That's so cool that you found the info regarding my stroke in such an old book. So I guess these doctors know what they're talking about after all, calling it rare and uncommon.

 

I know physical and cardio is good for brain plasticity as long as you don't overdo it. I'm nervous about chronic high BP as it increases your risk for stroke and heart disease. Hopefully mine is just a temporary thing. Still not checking it because I don't want to get nervous again and watch it rise.

 

Glad to hear about the good prognosis for my stroke type. My neurologist and eye doctor both said they believed I would make very good progress over time. 

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Hi again, hope it's ok to call you U.....I have to keep going back to your post to see how to spell your name.  :embarrassed: 

 

I'm so glad you're going to look into why your BP is fluctuating.  I told you my mom's BP became much higher after stroke.  She also has to take medication for high cholesterol.  Again, I'm the total opposite.  Have never had high BP or high cholesterol.

 

If you don't feel sensory overload, I know the other stroke survivors will back me on this suggestion; listening to your favorite music will help calm your anxiety somewhat.

 

Take care, hope you can delay your return to work.

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No problem Linnie, my name is Umberto, not the easiest to remember, spell or pronounce.

 

I'm waiting to go see my regular Dr to see if he has any answers for me, I'll let him check it.

 

Yeah I don't feel like I'm ready for work yet but yet two neurologists said I look fine and they see no reason to go back in a month or less.

 

Again, they're clueless and ignorant regarding how I actually feel NOT how I look on the outside.

 

 

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My brainstem stroke was 3 years ago. Your deficits are very familiar to me. The left Pons is where mine is located. It was hard to find it took a CT and 2 MRI exams to finally pin it down. It was described as a small piece of plaque lodged in the Pons. I am still faced with fatigue. Mornings are the best time for work. I am an upholsterer and I can put in 3 hours and then I am done. You must listen to you body ,if you over do it you will pay the price the next day. You are dealing with a new set of limits. It took me 18 months to realize that I will never get back to my old self. I got my handicap sticker for the car. Do not leave everything in the parking lot. Try and conserve your energy. I had my right side paralyzed,but I worked hard to recover and I was skiing in 6 months. I can ski better than I can walk. My therapist is amazed, but  I think it is different pathways in the brain. My breathing center was compromised and I have to really work hard to remember to breathe when working out. That is also where blood pressure and Temperature are controlled from. I was checked for central sleep apnea after the stroke and my AHI was 90 events per hour . I was stopping breathing that many times an hour. I am on ASV at a night which makes me take a breath when I stop breathing. I wish you best of luck in sorting out your life ahead. It is a challenge

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Thanks for your background roger, what an inspiring story. 3 hours a day, man I hope I can work a little more than that. I used to go into work by 7am and stay until 6 while others would waltz in after 10 and leave by 5:15. I got wise and started leaving by 4:30. I have to go in early to avoid traffic. So if I go in by 7 I would have to leave by 10-11, that would never be accepted. Even if I was to leave by 2 that would be 7 hours. Others recommend starting out a few hours a day but if your 3 years poststroke and can only work only 3 hours that's crazy. This is precisely why I have reservations about when I return to work what it will be like for me.

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Before my stroke I was the hard  worker that put in the hours until the job was done. I always had a second gear to go to and I would produce. Since my stroke, it is a different game. I just do not have the reserves to call on. Take it slow and see where you wind up. With a stroke the fatigue is something we all share. Good luck 

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Well couple things I have going for me is I'm 49 and I'm in the best shape I've been in for quite some time. Because I've changed my diet intentionally and have lost 30lbs since my stroke maybe in time I'll be able to gain some stamina back. We shall see I suppose.

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 :hi:       Umberto (thank you, that's much easier to remember and pronounce!), have you asked your PT if he/she could have any input to your neurologist's opinion about your return to work?  Your PT would have more knowledge about your stamina than the neurologist would.  (Or find another neurologist that is knowledgeable about the loss of stamina after a stroke.)

 

If you must return to work, and don't think it would be acceptable to stay only a couple of hours per day, something else to consider is to approach them about working 2 days a week to start, e.g. Monday and Thursday.  It would still be very difficult for you, but you'd have some complete days off to rest until your stamina increases.  

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Hi Umberto, if you can organise it, aim for a graduated return to work.  I did this, over a 2 year period. I had to get a doctors certificate each time we increased my hours but it did not affect my income support insurance, until I was officially back to full time hours as the return was under the supervision of the doctor and OT.  My OT went to my employer and set it up for me. We started with a half day work from home a week, and then progressed to 3 half days at home a week. The doctor recommended 8 weeks minimum at each level before adding more hours so that I had time to build my stamina and asses how I was coping. I never did half days in the office as the trip there and back was not worth it for the energy it would take, I was living a 45 minute train ride away from my office and was not allowed to drive at the time.  So from 3 half days at home we went to 1 full day in the office and 1 half day at home, then to 2 full days in the office.  So it took just over 2 years to get to full time status again.  And now I work full time with usually one day a week worked from home and the rest in the office. 

 

The other one to watch with the fatigue is that it creeps up on you. You can feel you're doing fine and you think you are fully rested before you start the next day, but it actually takes a little more than one night to recover so by the end of the week you are behind enough that you flake out. So you need to add more hours only when you can get through your current load each week without being completely wiped out by the end of the week.  So sometimes after talking to the doctor at the end of the 8 weeks she said "not yet, I'll see you in another month"  you need to be honest about what you can manage and how what you are doing affects you.  And you'll be fitting in PT and exercises around your work for a long time. (I still do, nearly 7 years post stroke)

 

In the end I also changed my role within the company, as I could no longer hold all the technical details in my head that I used to. For those first 2 years I had to get someone else to check my work for missed information, which I hated, but I also had to admit it was necessary, and when the opportunity arose to make a sideways move I did it. So I no longer work on the detailed technical design work I used to do. I now work in a support role, where my technical background is a benefit, but no longer the core of what I do.

 

I hope you can do something similar.

-Heather

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That's very helpful thanks for sharing. I will talk with my job and come up with a plan.

 

Both my PT (work on balance, stamina and strength) and OT (work on vision and coordination) therapists though guy I should be discharged even though I still have many session that would be covered by my insurance. I told thrk both I have been paying into this insurance for 10 years at this company so why not use it. I told them 3 weeks ago you never stop making progress albeit much slower. It's frustrating how even therapists are ready to give up on you once you've reached a certain point in your therapy. I realize I can and will continue therapy at home but there's much more to do at an institute with a therapist versus what you can do at home.

 

Maybe it's because I had set new all time records in some OT therapeutic excercises ha

 

For example in one excercise I had to put wooden shaped blocks from one board another identical empty board that had the same variously sized shapes cut out. My time was 2min 48sec. Usual times range around 4-5 min. :)

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Hi Umberto :

 

welcome to best online stroke support group. Sorry you had  need to find us, but now that you found us you will never feel alone in this stroke recovery journey again. I stroked at age 34  in 2004 which left me paralyzed on my left side & retired me from the job I loved & enjoyed. try going part time to your job & slowly increase to full time to see whether you can handle work pressure with your deficits. Not to discourage, every stroke is different & so is recovery. I tried going back to work after my stroke & after giving it try for few months I realized I won't be able to perform to my previous level, & if push comes to shove  in private sector I will be first one on the chopping block to be laid off, and then loose all my long term disability benefits too. So decided to go on disability. It was hard transition for first few years to be stay at home mom. I struggled with lot of self esteem & who I am question. I did not realize lot of my self worth was attached to money I made & my job title. Any how it was tough period back then, but with lot of support from family , friends & this site, I found my joy back again. So today after 13 years plus years on this post stroke journey I can find stroke as just speed bump in our life's journey. It just slowed me down to enjoy scenery along the way. I found blogging & chatting with other survivors quite therapeutic for my soul. We do have chat sessions every day M-F from 3-4 EST & evening from 8-9 EST(M,W,F), in survivor room. hope to see you around. BTW since you mentioned kesseler r u from NJ? hope to see you around often

 

Thanks,

Asha (now 46 year old)

 

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Thanks asha, yes happy to have found this site too. It has been helpful already after less than a week and I'm hoping to help or influence others too.

 

Yes I'm from NJ and I'm going to therapy today. :)

 

Thank you

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3 hours ago, ufusco said:

That's very helpful thanks for sharing. I will talk with my job and come up with a plan.

 

Both my PT (work on balance, stamina and strength) and OT (work on vision and coordination) therapists though guy I should be discharged even though I still have many session that would be covered by my insurance. I told thrk both I have been paying into this insurance for 10 years at this company so why not use it. I told them 3 weeks ago you never stop making progress albeit much slower. It's frustrating how even therapists are ready to give up on you once you've reached a certain point in your therapy. I realize I can and will continue therapy at home but there's much more to do at an institute with a therapist versus what you can do at home.

 

Maybe it's because I had set new all time records in some OT therapeutic excercises ha

 

For example in one excercise I had to put wooden shaped blocks from one board another identical empty board that had the same variously sized shapes cut out. My time was 2min 48sec. Usual times range around 4-5 min. :)

Hi Ufusco,

 

In California, short term disability is good for 1 year so long that you have sign off from your company.  75% of your salary for 6 months followed by 66% for the next 6 months.  Under CA law, your job is protected for 6 months but after 6 months, your job is no longer protected.  For stroke cases, usually the Neurologist signs off on the short term disability, not PCP and certainly not PT nor OT.  In my case, I went on short term disability twice.  In the first time, I challenged myself and went back to work after 4 months from my hospital discharge.  My cognitive mind (memory, executive function, planning) was not affected so I went back to work due to my arrogance and false bravado. It is in a real world environment where my chronic dizziness (imbalance and vertigo) became a real disability.  Also, a few years ago, Facebook started the open space work environment for increased collaboration.  Most companies in the Valley adopted this work environment including mine.  Unfortunately, this open space is really noisy especially crowd sound which is a real killer to stroke survivors as many people on this board can attest.  Also, climbing the stairs at work would leave me exhausted due to dizziness.  My symptoms were so bad that I had to go back on short term disability.

 

The other challenge is "looking completely normal on the outside" but having all issues (imbalance, vision, hearing, vertigo) in the inside in my case.  Co-workers just do not understand.  In my case, it was kinda of hostile work environment where I experienced bullying.  Or, you may experience folks treating you like walking on egg shells.  I think that you mentioned that UX/UED designer (I may be mistaken).  It requires a lot of collaboration between Engineering and Product and designs are developed organically.  So, I recommend testing your stamina in real world conditions.  I think visiting your company may be violation of short term disability.  (My company instructed me not to visit until short term disability is ended)  But, you can visit a friend in a similar work environment. 

 

I will PM later in the week.  We do have some similar issues along the PICA ( posterior inferior cerebellar artery) territory.

 

Charles

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On 5/19/2017 at 9:42 AM, Benni said:

 

.  I live in Newfoundland Canada where it stays cold for a long time. I used to 'freeze' if it got below 80 degrees in the house. Now I'm ok if it's below that. I sleep hot at night also -- many nights I run a fan on me even if it's 40 degrees, or lower, outside. And, no, they're not hot flashes. Already been there, done that for many years. This warm feeling is continual.

 

In a way that's good for me -- no more shivering when everyone else is warm!

HOLY Cow. I run a fan to feel the circulation. In my mind I breathe better.

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Charles, thanks for your posts they're very enlightening and it's nice to talk to someone who has been through something similar to what I went through. May I ask your age?

 

I'm a VX or Visual Designer. I need to look at a large display and think of creative designs for identities (logos), iconography illustrations, book cover design etc. so it's definitely a mental type job but sitting and racking your brain can be physically exhausting. Plus my company has three floors so that's a lot of steps.

 

I will have to figure out if going back and working a few hours a day, half days, or work full days and take a few days off to rest and see what is acceptable and find out how I can make sure I get paid my full pay if possible.

 

In NJ full pay short term disability I think is 6 weeks. But a new cycle just started on my insurance so even though I had reached my slotted 30 therapy sessions for the year technically a new year started in March so I have 30 new ones now at my disposal although I wonder if Accupuncture would be included in the new alotted 30 or if it's seperate.

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Hi Umberto,

 

I am a couple years older than you are.  I am familiar with VX and UX designer at my old work. You should check out SFMOMA which displays a lot of Jonathan Ive's designs on iPhone and Mac.  I am also friends with a lot of visual development and production designers at the major Animation studios whom I collected their personal artwork. I am big fan of Syd Mead, Eyvind Earle, Maurice Noble 

 

After you feel you that you have mastered your PT exercises, I do recommend that you try to a simulated run at your place of work before returning to work.  It means doing a complete day/week (taking transit, climbing stairs, high stimulation environments like crowds) and see how you handle it.  In this way, you can test how ready you are to return to work.  When I returned to work,  it was challenging in a real world work environment especially doing a planning session for  100 engineers, product and design in a large auditorium.  It was really difficult challenging for me as I was having vertigo, double vision and tinnitus. 

 

Also, I never welcome you to strokeboard.net  There is a lot of great people who share similar issues. 

 

Charles

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