scottm

Sometimes your perspective just collapses on itself

11 posts in this topic

I've been out of touch for awhile, it gets difficult to keep my spirits up sometimes. I had a visit with my neurologist a couple weeks ago and came away very despondent. He came off as very disinterested in my level of discomfort (my polite word). His words were "We've tried everything, there isn't anything else" he just came off as bored with me and my problems. He was doing the talk at you not to you thing. I came away feeling disheartened and hopeless which is a new feeling for me, I don't like it...

So I spoke with my PCP about that conversation and she was supportive of me and my wish to find a new better neurologist who doesn't just see me as another brain damaged drain on their time. She is going to talk to her network of doctors and shop me around to see who has experience with post stroke central pain and wants a compliant patient who actually is trying to get as good as I can be.

I was initially despondent over the whole thing but that has been forged into anger and a drive to show my former neuro how wrong he is. Thanks to my primary for the motivation to push on.

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Scott, the only thing I know about CPS is that I'm fortunate to not have it.  I can't imagine being in your situation.  Bravo for not giving in or giving up!!    Wish On A Star Smiley Face, Emoticon you and your doctor speedy discovery!

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Scott, I have a lot of stroke-related issues-confined to a wheelchair, problems with eyes and ears, etc., but I consider myself fortunate because I don't have CPS. Like Linnie, I can't imagine, and I'm inspired by all of you to keep up"the good fight". I hope that you can draw inspiration, and keep up the good fight too. What about a pump, like Steve has- would that help? Are there any teaching hospitals nearby? Or medical  schools?  If your doc can't locate a neuro for you, try broadening your search to other areas. Good luck, Becky

 

 

 

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13 minutes ago, becky1 said:

Scott, I have a lot of stroke-related issues-confined to a wheelchair, problems with eyes and ears, etc., but I consider myself fortunate because I don't have CPS. Like Linnie, I can't imagine, and I'm inspired by all of you to keep up"the good fight". I hope that you can draw inspiration, and keep up the good fight too. What about a pump, like Steve has- would that help? Are there any teaching hospitals nearby? Or medical  schools?  If your doc can't locate a neuro for you, try broadening your search to other areas. Good luck, Becky

 

 

 

Becky,

I've no idea about a pump, it's never been mentioned although I have read about them a few times but that wouldn't be in any of my first choices, that is a road with no way back really. We do have USF (University of Southern Florida) up the street which is considered one of the best medical schools and I had met with their stroke dept late last year about a clinical trial but it didn't work out. But they are on my list to investigate. This time though, I go into the situation without the haze of brain fog that was so overwhelming then and put me in a pliable state easily confused and controlled.

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I have had an ITB Pump for over 15 years for my CPS.  I'm a strong advocate for it as a last resort. 

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Scott, we share a lot of similar issues but I am not in your boat as I do not suffer from CPS.  Like Becky, I recommend teaching hospitals.  I want to share my story.  I went to see a Headache Specialist at Stanford as a referral from my ENT for vertigo.  The process to get an appointment is a little different.  There is new patients coordinator who gathered my info and records. Then, it was reviewed.  A brain fellow (a recent Resident) performed the evaluation under the supervision of Professor of Neurology.  I actually preferred it as the brain fellow would be taught the latest Medical training.  The drawback is that the I felt slightly like a subject in a classroom.  Her treatment was partially effective in one of my symptoms but not the main issue.  The beauty is that I am in the network of the other teaching physicians at Stanford and she referred me to the specialist who nailed the final diagnosis and treatment.  The process took about 1.5 years.

The other resource where I found a lot of answers are Medical Equipment Trade shows.  During the initial days when I complained about double vision, blurry vision and jumpy objects, my Ophthalmologist did not offer any explanation other than questioning whether I take street drugs.  I went to this public trade shows where they had eye tracking equipment.  I saw my jumpy eyes on the screen as well as left eye skew deviation.  Perhaps, there will be vendors who specializes in treating central pain.  

 

 

 

 

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Also, I am not sure whether you are a Veteran but I assume that VA Hospital are the experts in CPS.  They probably treat a more of TBI patients than strokes but the aftermath of stroke and TBI may be similar.  If you are not a Veteran, I wonder if VA Hospital can still be a resource.  At least, they can refer you to a CPS Specialist in your area.  I know the "boring uninterested look" that physicians give when they give up.  If I was not a *beep* and pushed forward, I would be still stuck in bed.

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Hi Scott I can really relate to your post. I haven't seen my neurologist since like October. The last time I had an appointment with her I was coming back to do a recheck after my Neuropsychologist appt. She had referred me and she had requested I come back in 3 months. When she walked in the room though she looked at my paperwork for a moment and asked why was I here. I told her I was there because she had asked me to come back in 3 months after I had my Neuropsychology report. She then huffed :question:and quickly looked at the report which was about 8 pages long and asked "Do you understand what this means?" My only response was "I think so." I was stunned and just stuck and was grateful I didn't cry right in the room. She said "I'll see you in a year." and that was that. I cried all the way to my car. On my report is read that I should be taking speech therapy still and work more on executive functions with her. She said she would work with any therapist I wanted to see and that she wanted me to go back to my Psychologist and keep going. My doctor never addressed any of this and she made me feel like a complete burden. I have been considering talking to my PCP about seeing someone else although she had never been this way before. I can just think back and imagine how you felt.

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Scott I relate. I know that hope is slipping away feeling that is layer wrapped in hoping anyway feeling so well.  I do not think it is possible for me to keep hope alive unless I am participating in some proactive stuff.

My docs have even become angry because I continue to report severe pain.

And others think I make it up. I mean it Is unbelievable to have terrible pain every day for years.

But we must not be silenced. for ourselves. for others.

We deserve to be comfortable and not suffer.

They act indifferent because they are ignorant powerless and know it all egos do not like that.

Have you consideted RFA.  it helps a little on me.

unfortunately it is implants pumps or mindtaking pills. what a choice.

I still hurt. It is hard.

Knuckleheads go back to their lives never knowing what this is like and incapable of compassion. But you are brave and wonderfully motivated. You may find something. keep going.

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Scott it took me over two years to get hydrocodone  for my dr they wanted me to try different drugs first then I broke my right fibula or arm and they gave me hydro. It helped with my cps and my arm. Doctors today just do not want to prescribe drugs that can help people like us we have to deal with cps and the doctors.

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I asked my neuro what if pills stop working and really I suffer before RFA that is not permanent.

He told me there is pump to spinal.a spinal implant. a brain implant.  

He finally declared to me when I said what would you tell your daughter.

He said implants cannot be removed or can damage more or not work enough/not at all.

He said the pump thing reported high success.

The RFA has to be repeated but so far has helped me plus on meds. I wonder what is next.

I am thankful to be off antidepressants that neither made me comfortable or happy and I experimented enough to finally be numb and unable to enjoy what should be enjoyed. It did not work in a long list of failed pills patches topicals.

I have tried visualization and relaxation praye mindfulnesd meditation massage positive everything, precious healing energy stones(my fav is my huge rose quartz ring and my purple amythest large heart pendant which are pretty anyway), nutrition,teas,vitamin minerals herbs And oils you eat smell wear soak in or spray around.

One says rest more another says exercise more. 

I open to all this stuff. I did chinese healing tea.you drink and paste and humidify.

How do you fight phantom pain?

3 years. my best things are what I do today. Opiates RFA distractions sleep my rosary my family.

 

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