Should I have DBS or not?

[Aussie]

I was diagnosed about 10 years ago. May 2011 I was in Lund to be accessed by a neurosurgeon. I have the shakes quite bad AT TIMES, not all the time, I take only about 1/3 of the total amount of Stalevo and Requip. Because of the waiting time I have begun to worry - do I really need DBS, the thought of someone drilling inside my head, complications etc. I know I should speak to a Parkinson RN or doctor. I would be thankful for any advice

[Odette]

Everyone should do her personal decision.I understand that it is not nice to think about surgery an everythung that is involved to it. But what i have heard and read about the experiences of the surgery, they have mostly been positive.

Most people have benefited of the surgery , they don't have to have as much or any drugs after it and it has made some symptons disappear or weaken.

I have a friend who is a nurse and now has herself PD. She has worked in a hospital where they make those DBS -surgeries and has seen how it works. She says that she would immediatly go to a surgery if she would be allowed to.

But it is your decision, Sometimes everything doesn't go so well and the results may not be so good, we will never know. Here must be some people who has DBS. I hope, they will write about their experiences.

Odette

[Odette]

oh, I realized here's a long conversation about DBS here. I think that gives you some thoutgs.

[FifteenyearsPD]

I had DBS a couple of months ago and Would do it again ! Diagnosed 16 yrs ago, I had done all,I could do .. Staying active, positive attitude , the works and needed help. ,,DBS was like a miracle ... The results gave me a life again.

But it was hard on me physically and emotionally .... Tests. 3 procedures in less than 3 weeks, pain the waiting and shaved head. And I was in good condition !and do not recommend that this be persued lightly.

[wordworks2001]

My neurologist has always suggested I wait each time I broach the subject with him, until my last visit when he brought it up. He always said DBS is an invasive procedure that is not without the possibility of serious complications. I have a friend who had an infection after his first DBS. They removed all the hardware and treated it. Six months later he had the DBS again. Within two weeks he got another infection and went through the same drill again, I have decided to wait until I absolutely can't stand my symptoms anymore.

[zama]

I, too, am having to decide whether or not to have DBS. I can barely walk and am in constant severe pain and would, more than anything, love to be free of that. But, thinking of the bad side affects that could happen causes me to hesitate, but living like I do is unbearable too. I gues what I need is lots of support and encouragement. Good luck to anyone out there wrestllng with similar issues.

[odonnell1]

I was interested in something you wrote: "I can barely walk and am in constant severe pain and would, more than anything, love to be free of that"

where is your pain? I also have pain but it is in my back. I have great difficulty, and standing up. I am interested in your response. God bless jimmy j

[SherriW in reply to odonnell1]

Hi -

I saw your reply and wanted to comment on it. I also have much back pain, but within the last year have begun receiving Botox injections which have made a huge difference. You may want to inquire about that if you haven't discussed it with your neurologist yet. My neurologist told me this past week that the pain is definitely a part of the PD but is played down more than it should be, whereas tremors are made to seem the most relevant symptom and he said only 60-65% of PD patients experience tremors. Didn't know that. Hope that helps.

[Koko]

First and foremost start seeing a nuerologist who speicalizes in Parkinson's disease. NOt a nurse or GP. Then try their recomendations for pill taking. Gve it some time.

Then look into the many hospitals that perform this surgery, be sure of the hosipital's track record, its program and the surgeon"s track record. Be aware of the possibilites of infection and what other things can go wrong. I looked into hospitals all over the US and somoe are solid and well versed while others seems to be excited about the monetary aspects. One University Hospital even has a psychologist attend the surgry to be there for the patient before and after the event. THere are many many things to consider before you sign on for the surgery. Take your time. DO your research. THis is not a cure all as most people hope or think it could be. WHat is good for some doesn't necessarly mean it is good for all. Don't rush into this. YOu owe yourself the best care there is. Good luck!

[Jeanna]

How does one go about looking into a hosptial's track record and a surgeon's track record? I too have been contemplating dbs after my neurologist's recommendation, but am scared about it.

[goose63058]

I had DBS 2 yrs ago . I checked out my surgen on line first there were no chages no complaints no pending actions were against him. i talked to my general pracitioner about him. it all check out. I had it done in 3 steps.the diagnosis was made 3 years earlir. I got 2 great years out of mirapex, then I went on carb/levo. Then I had surgery to remove half of my thyriod. i thought maybe the drugs had something to do with the lack of carb/levo effects so I hev treid Comtan, stalevo,seleglin cymbalta, all of them, with out any success. so dr said it was time to consider dbs. I had a lot of possitve feed back about dbs. the surgeon ever said he didnt think Id have to take any meds. since I have hadthe surgery I have had trouble walking. when the batteries are on I cant walk at all, when their off I stumble around like a drunk. When I am dyskinetic it does stop that, so it makes being out for dinner more pleasent, but while their on I have to sit because my legs dont work with them .

All inall I swon't have another brin surgery unless itsa cure for this affliction.

[Aussie]

Thanks everyone for your thoughts and advice. Much appriciated.

Aussie

[sunshineonacloudyday]

I has the surgery in 2014

And the adice I can give you is ....don't let fear prevent you from changing your quality of life for the rest of your life........your doctor willdetermine if thee is a benefitto you or not