Wanted To Know If Many People On This Site Had The Dbs Surgery Already, Or Are Thinking Of Going For The Dbs Surgery, Or Will Not Go | MyParkinsonsTeam

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Wanted To Know If Many People On This Site Had The Dbs Surgery Already, Or Are Thinking Of Going For The Dbs Surgery, Or Will Not Go
A MyParkinsonsTeam Member asked a question đź’­

Since my doctor is always bugging me to have the dbs surgery, I was wondering how many people actually go for it. Maybe i feel that I am not at that point in my PD to go for the surgery yet. When can you tell if your ready as my doctor has been telling me for years now that this is my next step.

posted April 28, 2016
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A MyParkinsonsTeam Member

I personally have not had the surgery but know a few in my exercise group who have. They seem to be split on their opinion of its help. I was told that the surgery is aimed halping subside the side-effects of talking Cardopa, etc. and may help the dyskensia problems not the PD symptoms.

posted March 24, 2017
A MyParkinsonsTeam Member

My husband had DBS surgery in Sept 2013. If was offered to him because over the 16 years of PD he had tried every combination of meds and had reached the stage of relying on subcutaneous apomorphine, which he had developed dopamine dis regulation with. However, the husband of a colleague of mine had it in 2010 and it went horribly wrong, sending him off into paranoia and this was because the screening process had not detected early signs of dementia. So we were extremely cautious about DBS. The screening process seemed thorough though, and he was at a stage where he was prepared to take the risk. We read up on the research and only about 40% of people get major benefit from DBS, but he was willing to take the odds because he was so fed up of feeling completely under the chemical cosh of apomorphine.

DBS is major brain surgery with a general anaesthetic and all the risks that come with that. He probably took three months to fully recover, and it has only been a qualified success. Some symptoms ( cognition, stamina, posture, gait) are much better, but some new problems appeared ( sleep disruption, constipation, worsening tremor). So he had to have oral medication added back in too. The DBS has been adjusted upwards several times over 2 1/2 years, and the neurology team seem reluctant to take the settings higher, as there is emerging research about side-effects ( visual disturbances and headache) which seem to be making them more cautious. Overall, we would both say that his quality of life is better because he is much more clear thinking and has the concentration to enjoy sport, film and music, but I suspect that could be attributable to being off the apomorphine, rather than being a positive effect of the DBS itself.

Having read so much of the research, and having worked with the medical profession for many years in an allied role, I do have a hunch that DBS is the new toy for neurosurgeons, as it is now being tried out on lots of conditions including treatment resistant depression and OCD. It is very wise to do your own independent research and thinking, rather than just taking your doctor's word for it. It is a highly individual choice to make, and carries uncertainties too.

posted May 2, 2016
A MyParkinsonsTeam Member

My husband had it in 2013 and it helps him almost 90%. before he had stifness you can not believe. He is a changed man! he does not have any stiffness and any problems. I would recommend it to anyone!

posted May 2, 2016
A MyParkinsonsTeam Member

hi bean, I have had the dbs surgery done twice and it hasn't worked both times. it is a very invasive operation and I sure as heck would not do it again. but a friend of mine had the dbs and swears by it. I am currently using duo dopa, and would highly recommend that.

posted May 1, 2016
A MyParkinsonsTeam Member

I too have been told I'm a good candidate. We have a neurological surgeon at the OSU medical school who specializes in the procedure. My own OSU neurologist helps in the pre-operative plan for each surgery. I began to ask more people " why now?" A women who had the procedure gave me a similar answer to what my doctor said -- the surgury made it possible to get more benefit from her medication (less On and Off periods), with lower Sinimet doses which then lowered her dyskinesia. She still has other PD symptoms.

posted April 29, 2016

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