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DarrellF

Brainstem Stroke Syndromes

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Has anyone here been diagnosed with any specific "syndrome" pertaining to their stroke?  I'm trying to get a more specific diagnoses to hopefully get a better plan for my wife Anne.

 

I'm looking at these...

 

Wallenberg syndrome https://en.wikipedia.org/wiki/Lateral_medullary_syndrome
Benedikt syndrome, https://en.wikipedia.org/wiki/Benedikt_syndrome
Claude's syndrome, https://en.wikipedia.org/wiki/Claude%27s_syndrome
 

Just wondering if anyone here has heard of these or know anything about them.

 

Thanks,

 

Darrell

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Hi Darrell sorry not familiar with those ones but your best option is probably to find a neuropsychologist who will do a cognitive assessment and help you formulate a treatment plan and/or coping strategies neuropsych is  very different to a psychiastrist or psycologist. They work with your neurologist and specialise in the cognitive impairments from brain injury.  They are relatively easy to find here in Australia but I believe much less common in US.  Good luck with it.

-Heather

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On 3/26/2020 at 3:08 PM, DarrellF said:

Has anyone here been diagnosed with any specific "syndrome" pertaining to their stroke?  I'm trying to get a more specific diagnoses to hopefully get a better plan for my wife Anne.

 

I'm looking at these...

 

Wallenberg syndrome https://en.wikipedia.org/wiki/Lateral_medullary_syndrome
Benedikt syndrome, https://en.wikipedia.org/wiki/Benedikt_syndrome
Claude's syndrome, https://en.wikipedia.org/wiki/Claude%27s_syndrome
  

Just wondering if anyone here has heard of these or know anything about them.

 

Thanks,

 

Darrell

well the first two have characteristics similar with my stroke. Mine was caused by a dissection in my vertibular artery ( chiropractic manipulation) that due to me bending my neck to the side, ( it was making me feel better for it was stopping the bleed)  not knowing that was the side with the dissection, then straightened to be put in a cervical collar to go in ambulance those clots that formed from that then went into my post circulation system. Basically affected all parts of my brain through my brain stem. 

 

What has her neurologist said? Have you asked them to better assist with a plan or her rehabilitation therapist?  

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The Neurologist (our third one) hasn't been very helpful.  All of them have indicated that there isn't anything that can be done either by surgery or medicine.  Anne has two lesions, involving the midbrain tegmentum and right superior cerebellar hemisphere.  

 

I'm researching these syndromes hoping that there might be "treatments" for something specific.  I'm not expecting a miracle cure, but something specific that might help, i.e. Deep Brain Stimulation, TMS, etc.  

 

I just feel like I'm not doing enough.  

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My stroke was bilateral cerebellar stroke in the PICA region so not a brainstem stroke. The brainstem and cerebellum are fed by the same posterior circulation (I believe that is correct). I have what is called Cerebellar Cognitive Affectice Syndrome (CCAS) for short. 

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7 hours ago, HostTracy said:

My stroke was bilateral cerebellar stroke in the PICA region so not a brainstem stroke. The brainstem and cerebellum are fed by the same posterior circulation (I believe that is correct). I have what is called Cerebellar Cognitive Affectice Syndrome (CCAS) for short. 

Thank you for sharing this. 

 

Darrell

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16 hours ago, ksmith said:

well the first two have characteristics similar with my stroke. Mine was caused by a dissection in my vertibular artery ( chiropractic manipulation) that due to me bending my neck to the side, ( it was making me feel better for it was stopping the bleed)  not knowing that was the side with the dissection, then straightened to be put in a cervical collar to go in ambulance those clots that formed from that then went into my post circulation system. Basically affected all parts of my brain through my brain stem. 

 

What has her neurologist said? Have you asked them to better assist with a plan or her rehabilitation therapist?  

The first two neurologists looked at her for about 5 minutes and said they couldn't help and she would remain in this condition permanently.  Our first visit with the new neurologist commented that Anne's walk was "spastic" and prescribed Bacoflen as a muscle relaxer and told us to come back in 3 months.  We did finally get an MRI and we had a TELE-VISIT the other day with her (virus shutdown).  She regurgitated what the MRI said and said that damage is causing her symptoms.  duh!  She recommended to continue therapy and that was it.

 

I asked her about Micro Current Neuro Feedback (MCN) and she had never heard of it.  I asked about Deep Brain Stimulation and she believed that would only help for Essential Tremor.  I asked about Transcranial magnetic stimulation (TMS) and she said she would research it.  Later that day I emailed her about the syndromes I posted, but don't expect to hear back from her soon.  We have our next appoint in ... You guessed it. 3 months.

 

I feel like we just keep kicking this can down the road because no one will invest the time into Anne.  Maybe time and therapy are the only solutions.  I just don't know and it frustrates me.

 

Sorry for ranting..

 

Darrell

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Darrel, there is no need to apologize for ranting- it is one of the reasons that we are here- to give you a "safe" place to rant if you want to. We've all needed to rant about stroke from time to time. Dealing with a stroke is frustrating, and we understand.   Becky

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Hi Darrell, It is one of those things that can be hard for us to fully understand. We expect modern medicine to fix things. But there is no medical intervention for most brain issues. A Neurologist does tend to only see the brain as an organ in isolation, and forget about the functional aspects of the whole body that are our focus in terms of being better.  Look for a Neuro psychologist and a Rehabiliation Specialist. They are the ones who will help you best with setting up a practical "recovery" program.  There is no drug or surgery or quick fix for this beast. She will need to rebuild and relearn like a baby does. It is slow and often frustrating but the sooner you stop looking for the miracle cure the sooner she can start on the day to day work that is the only available solution to this horror.  You do your exercises you practice what you want to do you get a therapist to help you work out what isn't working and how to adjust your techniques and you slowly start to rebuild.  And you repeat and repeat and repeat.

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59 minutes ago, heathber said:

Hi Darrell, It is one of those things that can be hard for us to fully understand. We expect modern medicine to fix things. But there is no medical intervention for most brain issues. A Neurologist does tend to only see the brain as an organ in isolation, and forget about the functional aspects of the whole body that are our focus in terms of being better.  Look for a Neuro psychologist and a Rehabiliation Specialist. They are the ones who will help you best with setting up a practical "recovery" program.  There is no drug or surgery or quick fix for this beast. She will need to rebuild and relearn like a baby does. It is slow and often frustrating but the sooner you stop looking for the miracle cure the sooner she can start on the day to day work that is the only available solution to this horror.  You do your exercises you practice what you want to do you get a therapist to help you work out what isn't working and how to adjust your techniques and you slowly start to rebuild.  And you repeat and repeat and repeat.

this is very true. I often tell people that the way they are now isn't exactly the way they will be in the future. That being said, some of the damage caused from the stroke will in fact always be present. With therapy and patience ( that is the most important thing to remember) she may be able to do more than right now. Watching someone we love go through something as traumatic as stroke is a feeling I can't fathom ,for I had the stroke, but we all want to try the "magic thing"  to make s=us like we were but , for some of us, it isn't in our cards.

I know you know all of this and I know you only want the best but just know that it isn't fun for your wife either. I can only speak for me but I know my recovery process took a long time. What I mean by that is most of the recovery is happening inside her brain. As I'm sure it was explained to you already by her doctors but it will happen at a snails pace. I liken it to a turtle walking in peanut butter.  The brain stem is a beast in its own. All strokes are bad but , I explain it like this :

 

If you hold spaghetti in the middle so some is up ( your brain) and some are down ( your body). If you crush the middle ( by squeezing it) there are some pasta that doesn't fully connect all the way. Her brain stem is the middle so when the brain is trying to relearn or circulate blood and oxygen there isn't a straight path so ,ever so slowly, the brain has to find other ways to get the info through. And visa versa. 

 

Like I was saying about me, I have , almost, every part of my brain was affected and not only was the bleed from the dissection but when the clots went into my post circulatory system ( brain stem) it cause lack of blood and oxygen causing me to have damage through out. How I was , in the beginning, after my stroke is not the way I am now. Sure, I have lasting things from then to now but I have, or my brain and medicine, found it better handle it.  As frustrating it will be watching her try to do things that she knows how to do, she will be equally as frustrated.  But as hard as it is please let her do it. She will be frustrated but you must let her try and it will test your patience but you have to let her .

 

The point is it takes time and patience,  That is the hardest things because, as I said before, as much as you wish her better, she does to.

 

 

with an understanding heart,

 

    Kelli

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Darrell you are welcome for my little input earlier (not sure if anything I have or am confronted with fits but I do share very similar things to those who have had posterior circulation stroke even in the brainstem). I whole heartedly agree with my other friends here. I know I definitely am not the same as after my stroke. Many things improved, went away, or I learned skills to deal with them (usually through therapy - physical and mental). The intricate way in which the brain accepts, processes, and sends new info out to complete an action, a response to those is just so complicated. It some times takes a long time for new connections and work around that can be helpful to us that have had an acquired brain injury. I will tell you that the brain is remarkable though. It wants to win. Impulses travel on pathways or highways and any disruption in that can cause so many things to not communicate correctly. I'm not sure of any specific answer but time is your friend. Keep the faith and all the blessings for you guys. ❤️

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Hi Darrell

 

I sympathize with you at the responses that you've received, but I fear that you're unlikely to get anything much more than that (unless its from a snake-old salesman).

 

I am fortunate enough to have a sister-in-law who is a very well connected and respected doctor, plus a while with a PhD in veterinary medicine, plus Canada has a wonderful medical system,.  I managed to get in to see one of the best neurologists around, plus OT, psychologist, psychiatric, neuro-psychologist, cognitive neurologist.  Pretty much every form of brain imaging under the sun.

 

Bottom line is that I have a bunch of deficits that they can do nothing to fix, but that may or may not improve gradually over time.  Some things are a bit worse, some have improved marginally.  I'm getting better at coping, and better at recognizing when I am getting close to my limits.  My family understands the limits of what I can do, and how to recognize when I am running off the rails.  All of this makes life more pleasant than it was immediately post-stroke, but still nowhere near as good as it was.  According to the experts, this is true for pretty mush all strokes thatchy have encountered.

 

I guess the upshot of this long and pedantic post is that your wife will probably change slowly in often subtle ways,  What is more likely to make a difference is over time, as learn to live with and work around her deficits.

 

Speaking as a survivor, with an over-achieving wife, I have an idea of what you must be going through.  However, from my experience, I would say that opening time with your wife, helping, encouraging and supporting her, will be far more beneficial than looking for cures.  I may, of course, be wrong.

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