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4-Year DBS Follow-up


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#121 New normal

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Posted 14 September 2014 - 01:46 PM

Kimagain and coachT,

After a week of assessments and evaluations at a movement disorder clinic, it looks like DBS may be in my future..so I really appreciate both of you taking the time to teach..and inform...

Kim.. The PT said in 7 years he has only told 5 people what he told me...that my tremors are so out if control that I may benefit from
DBS. However, I have speech problems..halting, stuttering , and word retrieval..and significant memory issues. The speech people say there have never seen a DBS patient who did not experience more deficit in speech after the DBS surgery...even if the DBS was very successful for tremors.

So in a crass term, do I want to talk or do I want to walk....I will sacrifice one for the other...or at least, alter one or the other. And cognitively...I read where there is an increase in cognitive and emotional issues after DBS, while a great improvement in tremors can occur.

Do you have an opinion?
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#122 coacht

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Posted 14 September 2014 - 05:31 PM

So far, my wife has not speech problems, it was softer after the first surgery, but is okay now. Some anxiety has returned. Some memory issues are present, but issues were present before the surgery. I think a lot of that is that she is easily distracted and
does not listen well. there are no issue present that have not been around before, but it has only been turned on for four days.

Our oldest son said he noticed how much more relaxed her face is. I agree, plus she can smile for the first time in five years.

They did say at her check ups that her results are optimal, so it may be much different for others.

Hope that helps,

Coach T

#123 graflexmaster

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Posted 14 September 2014 - 05:32 PM

I've talked to a few people that have gone through DBS, including one via the Medtronics ambassador program, and although I realize that yes, speech issues can be problematic after DBS, those I've talked to haven't had any more speech issues than they had prior to DBS. So personally? I'm not going to worry about it........ and just go for it.......


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#124 young_dad

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Posted 15 September 2014 - 11:45 AM

I believe the speech issues also are more prevalent based upon whether the placement is in the STN or GPi.  You will definitely want to talk to your surgeon about the target location and which would be better and have less adverse effects.  Also, which generally has better results for the particular issues you have and that you want the DBS to address.



#125 KimAgain

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Posted 15 September 2014 - 01:40 PM

Speech issues were never mentioned to me by anyone prior to surgery... And, I can report that I have not had any in the nearly six years since my surgery.  I attended a DBS webinar about two years after my surgery and the MDS giving the lecture stated, quite unequivocally that speech issues are a side effect of DBS surgery and that they come on sooner or later, usually sooner.  Oh great, I felt then that I had an axe hanging over my tongue and, any  day now, the DBS would fry my speaking abilities!  So far, as I said, that has not been the case.

 

No promises were ever made to me about cognitive improvements and, at the time of my surgery, my cognitive slowing was minimal.  I was assured, however, that anything medication could (and did) improve, DBS would improve, too.  So far, it has.

 

Interestingly, my surgeon told me at the time of my surgery that studies were underway to determine if DBS actually slowed the progression of PD, but study results were a way off, however, he said, early indicators were that it did, indeed slow the progression of the disease.  Well, on that subject, I can say that, based on the rate of my progression before surgery, my disease has, in fact, slowed way down.   

 

coacht,

Glad to see things are going well for Mrs. coacht!  A smile is a beautiful thing and terrible shame to lose... I'm glad she's getting her smile back.  

 

Stay strong everyone,

Kim


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#126 graflexmaster

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Posted 15 September 2014 - 03:30 PM

Thanks Kim;

You post is quite timely, even though I said I wasn't going to worry about it, speech issues have been nibbling at the corners of my mind. Especially in relation to DBS....... My other fear (although completely unfounded) is losing what makes me, "me" in the process. You know, all those little odd traits that make me who I am, that make me unique.


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#127 coacht

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Posted 15 September 2014 - 03:50 PM

Michael,
Look at it this way, if you do change you will just have more odd traits that make you, you. :)

#128 graflexmaster

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Posted 16 September 2014 - 06:14 AM

but, but, but........ I LIKE the "odd" traits that I already have...... well, except for the PD ones, those,

can go........ but, then again........ the new ones might be a whole lot of fun as well......<GRIN>

 

can I have them all?


Edited by graflexmaster, 16 September 2014 - 06:17 AM.

Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#129 KimAgain

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Posted 16 September 2014 - 10:27 AM

http://192.168.0.15/Record9.aiff

 

Trying this out for the first time--please be patient if I fail, I am a tecno-idiot!!


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#130 KimAgain

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Posted 16 September 2014 - 10:29 AM

Well, it's supposed to be an embedded sound file.  Can anybody hear it??


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#131 graflexmaster

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Posted 16 September 2014 - 01:18 PM

Nope, sorry nothing at this end hun.


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#132 Rogerstar1

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Posted 16 September 2014 - 01:37 PM

Nope, sorry nothing at this end hun.

I think you meant 'hon' an abbreviation for honey.  Huns were barbarians led by Attilla  in the Fourth Century. :razz:


Edited by Rogerstar1, 16 September 2014 - 01:58 PM.


#133 graflexmaster

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Posted 16 September 2014 - 04:45 PM

Ahhh, but I could have typed "hun" as a signature, as I am 100% German, of Prussian decent........ Therefor "hun" would apply..... <chuckle>


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#134 KimAgain

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Posted 16 September 2014 - 07:29 PM

I'll keep trying!


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.





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