Bruce
09-01-2001, 07:24 PM
I had the surgery on Apri 24, and just wanted to give both sides of having the surgery. I have had about 7 adjustments following the surgery with no significant improvement. The surgery is not for everyone, however, many pd patients have had successful surgeries and have been blessed with a beter quality of life.
The surgery procedure went very well for me and it seemed easy.
Their are studies gradually coming out that show significant failure rates. All I am saying is if you think you need this surgery, go to a medical center and go through the screening process.
The surgery procedure went very well for me and it seemed easy.
Their are studies gradually coming out that show significant failure rates. All I am saying is if you think you need this surgery, go to a medical center and go through the screening process.
Sponsor
Googy
09-01-2001, 11:00 PM
Bruce,
I feel bad that this surgery didn't work for you.How are you to know.If you hadn't gone ahead with it,you would always think,what if !!
love,
Googy
I feel bad that this surgery didn't work for you.How are you to know.If you hadn't gone ahead with it,you would always think,what if !!
love,
Googy
queenbee54
09-02-2001, 04:32 AM
Bruce: I am really sorry to hear this. I know you do a lot of research, so has Medtronics given you any advise on the adjustments that can be done by chance and do you feel confident about the people who are making these adjustments? Also, I know that they told my husband that not everyone has benefits from this but what is the screening process that you mentioned? My husband went to USC medical center for movements disorders and had a consultation with the two docters who perform the surgery in the movements disorder center. They asked him several questions and looked at him first, is that what you mean? I am still fighting the insurance for the rest of the surgery for him however, and it is now in 3rd party review. All he had so far is one side of the surgery and no stimulator because the insurance won't authorize the other side!
I really hope you can get some benefit from your dbs-stns. Did you have both sides done?
I really hope you can get some benefit from your dbs-stns. Did you have both sides done?
Caring
09-02-2001, 04:33 AM
Bruce, Wow. I am really sorry to hear this, but I am still praying for them to find the right setting for you. I'll ask my friends to do the same, we will ask for miraculous results.
Take Care now.
Sincerely,
Caring
Take Care now.
Sincerely,
Caring
Bruce
09-02-2001, 09:55 AM
The screening process I mentioned, for an example, I will describe how they do it at Kansas University Med Center It takes at least a week and you are given a lot of mental tests. They do some of it for research and they have one of the most experienced surgical teams with this surgery in the country.
As for why my surgery isn't working, I don't have a clue. The neurologist doesn't have a lot of experience with the programing, but yet seems knowledgeable.
Two days ago he boosted the voltage and he told me to expect dyskinesia which means the stimulators would be working. Yesterday, it had just the opposite effect and I felt week all day. That was a big letdown.
I asked the neuro if the electrodes weren't implanted in the correct spot in the brain. He didn't really answer the question like I thought he should.
What concerns me, is I can adjust to the fact the surgery isn't working, but all the research I had done over the last three years seemed to be overly optimistic. I was led to believe it was almost a sure thing that my quality of life would be improved, but very little was said about the downside. I am not trying to discourage anyone from having the surgery, but just don't let your expectations get to high like I did because the let down can be much worse.
Thanks for all the kind words.
Bruce
As for why my surgery isn't working, I don't have a clue. The neurologist doesn't have a lot of experience with the programing, but yet seems knowledgeable.
Two days ago he boosted the voltage and he told me to expect dyskinesia which means the stimulators would be working. Yesterday, it had just the opposite effect and I felt week all day. That was a big letdown.
I asked the neuro if the electrodes weren't implanted in the correct spot in the brain. He didn't really answer the question like I thought he should.
What concerns me, is I can adjust to the fact the surgery isn't working, but all the research I had done over the last three years seemed to be overly optimistic. I was led to believe it was almost a sure thing that my quality of life would be improved, but very little was said about the downside. I am not trying to discourage anyone from having the surgery, but just don't let your expectations get to high like I did because the let down can be much worse.
Thanks for all the kind words.
Bruce
mimilast
09-02-2001, 07:37 PM
Bruce,
What does the neuroteam that operated on you say about your results ? Have they considered the possibility that they did not reach the target and that your electrodes are not properly or optimally located ? That's what happened to me and i'm currently awaiting resurgery.
Mimi
Originally posted by Bruce:
The screening process I mentioned, for an example, I will describe how they do it at Kansas University Med Center It takes at least a week and you are given a lot of mental tests. They do some of it for research and they have one of the most experienced surgical teams with this surgery in the country.
As for why my surgery isn't working, I don't have a clue. The neurologist doesn't have a lot of experience with the programing, but yet seems knowledgeable.
Two days ago he boosted the voltage and he told me to expect dyskinesia which means the stimulators would be working. Yesterday, it had just the opposite effect and I felt week all day. That was a big letdown.
I asked the neuro if the electrodes weren't implanted in the correct spot in the brain. He didn't really answer the question like I thought he should.
What concerns me, is I can adjust to the fact the surgery isn't working, but all the research I had done over the last three years seemed to be overly optimistic. I was led to believe it was almost a sure thing that my quality of life would be improved, but very little was said about the downside. I am not trying to discourage anyone from having the surgery, but just don't let your expectations get to high like I did because the let down can be much worse.
Thanks for all the kind words.
Bruce
What does the neuroteam that operated on you say about your results ? Have they considered the possibility that they did not reach the target and that your electrodes are not properly or optimally located ? That's what happened to me and i'm currently awaiting resurgery.
Mimi
Originally posted by Bruce:
The screening process I mentioned, for an example, I will describe how they do it at Kansas University Med Center It takes at least a week and you are given a lot of mental tests. They do some of it for research and they have one of the most experienced surgical teams with this surgery in the country.
As for why my surgery isn't working, I don't have a clue. The neurologist doesn't have a lot of experience with the programing, but yet seems knowledgeable.
Two days ago he boosted the voltage and he told me to expect dyskinesia which means the stimulators would be working. Yesterday, it had just the opposite effect and I felt week all day. That was a big letdown.
I asked the neuro if the electrodes weren't implanted in the correct spot in the brain. He didn't really answer the question like I thought he should.
What concerns me, is I can adjust to the fact the surgery isn't working, but all the research I had done over the last three years seemed to be overly optimistic. I was led to believe it was almost a sure thing that my quality of life would be improved, but very little was said about the downside. I am not trying to discourage anyone from having the surgery, but just don't let your expectations get to high like I did because the let down can be much worse.
Thanks for all the kind words.
Bruce
Bruce
09-02-2001, 08:19 PM
Mimi, that is a good question. I think I am going to bring that up with the neurologist and call the neurosurgeon.
What led you to believe the electrodes were not in the correct location? After all I have been through, I am skeptical of anything a docter tells me, regardless of his experience or training..
Thanks, Bruce
What led you to believe the electrodes were not in the correct location? After all I have been through, I am skeptical of anything a docter tells me, regardless of his experience or training..
Thanks, Bruce
Caring
09-03-2001, 08:47 PM
Bruce,
It's going to be allright now...I've got a bunch of people praying for you. :)
Take Care now.
Sincerely,
Caring
It's going to be allright now...I've got a bunch of people praying for you. :)
Take Care now.
Sincerely,
Caring
Bruce
09-04-2001, 08:49 PM
Caring, I guess I am feeling gabby tonight. Abour 4 years ago I tried to take out a big tree with my little Ford Escort. A good friend of mine put me on the church's prayer list I was told by two orthopedic surgeons if didn't have surgery on my foot to fuse bone chips in my foot,I would have to live a life in pain and wear a special shoe. The shoe is in the closet and am feeling no pain.
I didn't post this topic to seek sympathy , but to inform others about my experience.
I didn't post this topic to seek sympathy , but to inform others about my experience.
Austin
09-11-2001, 03:56 AM
Dear Bruce, Praying for you from that southern part of the country the your surgery becomes more beneficial. You said you tried 7 adjustments...keep going back until they find the right adjustment for you. Hope they find it soon.
Re: Cell Therapy, you said the immune system rejects lamb cells. Where might I find more info. on this and the names of anti-rejectin drugs? (I wrote the cell therapy message on this board.)
Re: Cell Therapy, you said the immune system rejects lamb cells. Where might I find more info. on this and the names of anti-rejectin drugs? (I wrote the cell therapy message on this board.)
Bruce
09-11-2001, 07:39 PM
Austin, I want you to understand that I wish I was wrong about the lamb cell therapy and I felt badly that I couldn't give you a more positive answers to your questions.
We have one thing in common and that is we are fighters and survivors. I just hate to see you ripped off.
I am getting a power lift installed in my SUV thursday and I have a nurse taking me to a party on the 15th. So I am doing great. I come in contact with nice, friendly people who help me every day. It could be a lot worse.
I don't care if the surgery works or not, I can deal with it.
Bruce
We have one thing in common and that is we are fighters and survivors. I just hate to see you ripped off.
I am getting a power lift installed in my SUV thursday and I have a nurse taking me to a party on the 15th. So I am doing great. I come in contact with nice, friendly people who help me every day. It could be a lot worse.
I don't care if the surgery works or not, I can deal with it.
Bruce