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Old 09-24-2012, 02:11 PM   #1
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Angry Cerebellar stroke: A ten year history

After the hospitalization of my stroke, I spent three months in rehab and two months of outpatient physical therapy graduating from a wheelchair to a walker and finally to the use of a single point cane. A year later I was able to relearn how to drive with an instructor after having driven for fifty years prior.

My stroke side effects were dizziness (vertigo), double vision (diplopia) nystagmus ,staggering gait (ataxia),weakness of the right side, tinnitus and occurrences of bronchial spasms. Later stroke related symptoms of peripheral neuropathy (legs), increasing tremors, chronic headache, nausea and increasing memory loss. I'm on Plavix, baby aspirin, BP and cholesterol meds.

Following my PT, my side was strengthened, but there was no improvement in my other symptoms, other than correcting my double vision with prismatic lenses . I had seen several neurologists but the best they could advise was to undergo vestibular training which I started until my nystagmus was detected and I was referred to a neuro-opthomologist for optical therapy with the intent of continuing my balance training. However, there was no improvement of my vision and vertigo and ataxia had increased considerably. The opthomologist referred me to a neurologist whom supposedly is one of the top physicians in the County.

The neurologist explained that my vertigo was the result of damage incurred to my right ear vestibular nerve which was receiving garbled messages due to my brain injury. He stated that a series of gentamycin injections will “kill” the nerve and reduce or stop the vertigo. He added that I will probably lose some or all of my hearing in that ear and the sense of balance on my right side, but I will be able to resume vestibular training with my brain compensating for the loss of balance on my right side. He referred me to a neuro-otologist to have the procedure done. I was ecstatic with the hope of regaining some of my lost facilities after all the suffering and pessimistic outlooks offered from prior doctors.

Immediately after the initial injection there was a considerable further loss of balance. The doctor explained this was expected and to contact him a month later when I should be restored to my prior condition before the procedure. Several weeks later there was no improvement. I then visited another neuro-otologist for a second opinion and was told the procedure should never have been done and that treating a peripheral area for a brain injury was a futile attempt. He then cautioned me not to undergo further injections and salvage the little balance that remains.

That was five years ago and since that time I can no longer drive and rely on a walker with difficulty and am housebound. I apologize for the lengthy monologue, but I appreciate the opportunity to vent to fellow sufferers who can empathize. I am in my mid-eighties and was hoping for some relief before my final goodbye to Mother Earth, but it appears it won’t happen as my last attempt for help was a consult with one of the nation’s leading neurologists who stated nothing can be done for my worsening condition. The irony is that so many neurologists have suggested balance therapy which this doctor said would not be beneficial in my case, which makes me feel that my ten year medical journey was a quixotic experience.

I can only caution you with the following:
. Do not under any circumstance allow the use of gentamycin. It is a poison that the FDA has warned against its use, but some physicians continue in their treatment (do a Google search for more info.)
. Seek a second opinion before any procedure (unfortunately, I failed to do this and placed my trust in a couple of idiots!)

Last edited by DIZZYBEAN; 09-24-2012 at 05:43 PM. Reason: information omission

 
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Old 09-25-2012, 03:03 AM   #2
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Re: Cerebellar stroke: A ten year history

G’day DIZZYBEAN,
Welcome, thank you for sharing your life experiences with us. I hope you are as well as can be. I agree with you about obtaining second opinions.
Mate you can vent as much as you want. I find venting helps me. Doctors, bless them all, the first night at hospital; the neuro tells my wife” if he lives he’ll never walk “. I was well with in ear shot and heard every word.
If I’d taken those words as gospel I’d still be lying in bed not being able to move.
God bless you and all the very best of health to you.
George.

 
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Old 09-25-2012, 07:20 AM   #3
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Re: Cerebellar stroke: A ten year history

Thanks for your response, George. I read several of your posts encouraging others and relating your stroke experience. I commend your optimism and hope it continues as you recuperate which I hope will progress smoothly.

I'm afraid my post appears to be pessimistic although my initial progress was encouraging and my mind set was very positive. I was determined to better my condition despite the lack of any encouragement from the neuro-medical pros, but after ten years of fighting windmills I realized it was a futile battle and was only harming myself further with my persistence. I can tolerate most of the effects from my stroke with the exception of my vertigo which is so intense that it disallows me from everyday activities that most people take for granted. However, I fight off depression by thinking of others much worse than I am and at age 85 I can't expect too much of a future.

 
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Old 09-25-2012, 08:12 AM   #4
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Re: Cerebellar stroke: A ten year history

Am sorry for your struggle and suffering. Medicine has made some great advances but I have few expectations when it comes to the mystery of the brain. They try but much needs to be explored and learned about that mostly unknown frontier.

What I place my trust in is the plasticity of the brain to compensate for itself and our own drive and persistence to exercise what was not taken away, including our precious presence of mind. My daily effort is to do all I can to not invite another attack.

This Dec. 19 it will be two years. If I'm around I'll be celebrating like mad to thank my lucky stars for the ability to fend for myself, regardless of numbness, of heaviness, of fatigue, sometimes pain. Yesterday I thought that right leg was giving out. But it recovered, thank goodness. As George says, venting helps and we have the place and ability to do it. How nice.

 
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Old 09-25-2012, 08:18 PM   #5
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Re: Cerebellar stroke: A ten year history

Dear Dizzybean
Welcome and thank you for all that information. I am so sorry for what you have suffered at the hands of those we are suppose to be able to trust. I am in stroke recovery because of a doctors perscription and this life ultering experience I have her to thank for it. I couldnt agree with you more about the 2nd opinion. Everyone must be there own advocate and demand the best of care for yourself. It is something we should expect and not have to demand. My second opinion neurologist was a great decision. He is a wonderful man and very knowledgable in understanding stroke.
I agree with you about doing our own research. So much is available to us know.
I agree with George, you are more than welcome to rant. We are all here to listen and help in any way we can. We have big shoulders and we are great listeners so rant away.
God Bless Mulchie

 
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Old 09-26-2012, 06:28 PM   #6
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Re: Cerebellar stroke: A ten year history

Hi Mulchie,

Thank you for your response. While I like to think of doctors as concerned and dedicated to helping their patients, I have had too many negative experiences of indifference and downright ineptitude. An example is that of a chief neurologist when I was first hospitalized with a stroke who was ready to sign my release after only 4 days when I couldn't even stand up. Fortunately, my son interjected before they sent me home and the doctor realized his error and apologized and approved entry to a rehab. I have learned to trust my own judgement in most medical decisions or seek a second opinion and search the internet.

I read in one of your posts that you were having difficulty in stabilizing your cholesterol with statin medications. I have been taking simvastatin for several years but found my lipid levels dropping much further after taking 500 mgs of Slo-Niacin daily which is available without a prescription. It might be a good idea to speak to your doctor before taking although the side effect of flushing is slight if at all

I'm glad you are in the hands of a competent neurologist with good rapport.

Diz

 
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Old 09-26-2012, 06:51 PM   #7
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Re: Cerebellar stroke: A ten year history

Thank you for the infor on cholesterol medication. It really helps to hear about meds that are working for other people.
You mentioned your doctor was ready to discarge you after 4 days you will really appreciate this, I was never admitted to hospital. I was seen in Emerg. They confirmed stroke, and wheeled me out in a wheel chair. Sent me home. Very scarry. They refered me to a stroke clinic who called me at home the next day. They were very upset I was at home and said the risks of being at home for the first few days after stroke were very serious. They seen me right away at the clinic and started tests. But still those people sent me home too. It was the beginning of one neglectful thing after another. So I am strong in believing you must be your own advocate or have a trusting family member be your advocate. It sounds like your son was right on top of things. and thats what you hope for.
Thanks again for the info. God Bless Mulchie

 
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Old 09-27-2012, 02:06 AM   #8
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Re: Cerebellar stroke: A ten year history

G’day DIZZYBEAN,
Thank you for your kind words. I wish you all the very best this world can offer you.
It’s not only doctors that negative; I found most people are negative, in a roundabout way, “don’t do this and don’t do that you may hurt yourself”. I reckon may be its just me not being very tolerant.
Any way gods blesses you, “and keep on keeping on”.
George

 
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Old 06-08-2013, 03:37 AM   #9
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Re: Cerebellar stroke: A ten year history

Hope you guys still around. Something similar happen to my father. Lost his balance, swallow, speech and weak on his side after his stroke. They gave him days now he is on route to rehab . we. Are in NYC hoping find the best place.

 
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