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chuck172

unresponsive to meds

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I keep reading that to be eligible for dbs the patient must be responsive to levadopa. They are even tested prior to the surgery. I am tremor dominant levadopa resistant. Does that mean I'm ineligible for the procedure?

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I would check with your insurer's coverage qualifications.  I mainly had bad spinal dystonia with mild parkinsonian symptoms, probably worse with Sinemet (no beneficial response), which was a covered condition.  The DBS worked great for me- and I had bilateral leads put in. The big question mark insurers want to know is whether or not you have an atypical parkinsonian process, which typically does not respond (or may worsen) with DBS.  Your MDS' office will have someone that processes insurance authorizations so you can find out whether or not it is approved before you have surgery.  

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You can generally search your insurer's coverage requirements online- that's where they list the criteria for coverage. I did not respond well to levodopa either, but my DBS was covered for dystonia, which I also had.

Some people with 'atypical' symptoms end up having PD, and some patients with 'typical' PD symptoms end up with something else.  Unfortunately, movement disorders can be tough to pin down initially.

Good luck, and this is an excellent conversation to have with your neurologist 😉

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Hi chuck. I am also unresponsive and was told i am not atypical but not a candidate for dbs. Apparenrly a small subgroup of typical parkinsons just dont respond to meds. Bad luck. I guess.

Good luck and recheck with your mds

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Hi all,

Generally, they will not do DBS on a person who is not responsive to levodopa.  It's my understanding that DBS will only help those symptoms and/or side effects that you experience if the levodopa also addresses them.  Otherwise, they determine that it will not have any beneficial impact.  Certain criteria must also be met to show the insurance company that it will likely be successful in order for insurance to pay.  Sorry to hear about the situation you are in.   Have no medications proven helpful for your PD?  

Peace,

Mihai (Michael)

Edited by Mihai
Mistake fixed

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Hi chuck172,

I am not a doctor, but my understanding is that if PD meds do not improve your symptoms, then DBS is likely out of the question.   Do I understand you right that you have a resting tremor, but no medication for PD addresses that tremor?  Do you have rigidity?  Do you have bradykinesia (poverty of or slow movement)?   Certainly, throughout the assessment process, the team will make a decision about whether or not DBS is likely to help you...  If PD meds do not, however, it is doubtful that DBS will.  Does that make sense?

Mihai (Michael)  

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DBS is not the holy grail for fixing Parkinson’s. Most people get  into it out of desperation. Sometimes, in my personal opinion most of the time, you may be better off without it when you factor in major speech and balance issues and surgerical side effects that comes with it later on. You gain some benefits by getting some side effects. Is that trade off worth it? You decide.

Edited by waruna01

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That's true...there are always two sides to every coin.   Sometimes DBS will make some things worse.  I guess it's a very individualized decision based on pros and cons for that very reason....  I hope you can get some relief for your PD symptoms through some treatment avenue....

Blessings,

Mihai 

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Hey Skiing...

I feel for you.  PD is a frustrating disease without a doubt.  Somedays, the only helpful thing is the meds that, while imperfect, take us to a certain level of normalcy.  You are in my thoughts.  Have you explored all of the medication possibilities?   C/L is the gold standard in PD...not sure what they do when you have PD, but the PD meds don't touch the symptoms...  If you want to talk, let me know.  Sometimes just a shoulder to lean on is better than anything else...  Do you have family and/or friend support?

Peace,

Mihai

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Thanks mihai for your kkind words. My mds (plural) have decided there is nothing more they can do. I do have a good physio. I have to constantly relearn and adapt when losing functions. At the moment i have to find a different way to put on trousers....

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Being here for each other is what it's all about.  You will find that the ability to adapt will serve you well.   PD is synonymous with the need to adapt to new ways of doing things around every corner.   We just have to keep out-smarting the disease process in any way we can.  Sometimes we just need to cry, but don't forget to laugh.  PD presents many opportunities to laugh at ourselves.  At times, the ability to find humor in the midst of the pain (in addition to the ability to adapt) has been what's kept me going.  I know it's hard.  I can't even imagine it without medication, but hang in there....keep fighting.  What are your primary symptoms?

Blessings,

Mihai

 

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Hello Skiing I am somewhat like you and understand the frustration.   Been up since 2 am. 3:30 am now.  Pain, stiff, cramps can't get relief.  Might as well just stay up and take my mind somewhere else.  The medicine does nothing for my balance.  Fell three times at Rock Steady Boxing yesterday. I use to even box when younger. Now walk with a cane. Without the cane shuffle and fall the tired my legs get. But the meds do improve my speed . My tremor came after other symptoms. The meds help with that but stress overrides often.

This Parkinson's is different in what area it decides to hit the worst. (Imo) I am drawing my conclusion by observation of function of others at rock steady boxing.

I kinda a think old injuries be it body or mind could have effects.  If you have a weak area it takes more nerve communication to function. Compromised to begin with before Parkinson's.  My dose of sinemet is a total of 900 mg a day.   If I take more my function does not improve. But it is clear with less I get stiffer, slower, and now tremor worse.  I have talked to the doctor and balance kinda excludes me from DBS.  Head concussion 3 known times and what looks to be lesions from mini strokes. Eye exam show lose of some peripheral vision in one eye.

We all play the cards dealt to us.  At the same time some of are problems are not PD related.  

No solution for some.  One day at a time.   Tom  today 64 feel 84.  Tomorrow 64 feel like 70.

 

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