DBS truly reversible?

[lenamm]

Hi all,

In all the DBS vs FUS posts the argument is that DBS is reversible. The two people I know who had DBS pulled are in horrible shape - one had a stroke from it. I also know of a number of people where DBS made them worse or did nothing. So for my own knowledge - do you know people where it has successfully been reversed? I am yet to meet anyone who had a FUS surgery without benefit and not one who got worse from it. I'm just curious. It might just be the people i know. And yes I do know many where DBS was very helpful.

[Routine100]

DBS is a procedure that is invasive and has lot's of practical drew backs . FUS in the most modern approach advanced technology to treat tremor the many benefits out weigh the fact that it irreversible, my understanding is that removing the problem is common. How many people get teeth pulled, eye laser surgery and hundredths of other procedures. My wife has PD but not tremors so she was not a candidate.

[lenamm in reply to Routine100]

Just FYI two of the FUS surgeries can help people without tremor. Pallidothalamic tractomy that I had and pallidotomy.

[Routine100 in reply to lenamm]

I have never heard that Pallidothalamic tracheotomy pallidotomy can be done with FUS where did you have it done?

[lenamm in reply to Routine100]

In Switzerland

[Routine100 in reply to lenamm]

I contacted the clinic in Switzerland 3 years ago and was not made aware of the FUS procedures you mentioned. Can you explain what were the results and procedure you received. Thalamotomy and Pallidotomy are brain surgeries that have been performed in the past but are no longer popular and rarely done however have shown positive results in Switzerland did you get the mentioned procedure with FUS? I was quoted 35,000 francs for this procedure is this the cost or has it increased? Do you know of other clinics offering same treatment?

[lenamm in reply to Routine100]

The clinic has been doing PTT by FUS for nine years so I'm not sure why you were given different information. There are many threads here - just search Switzerland FUS. Thalamotomy and Pallidotomy for PD are available in the states but not Switzerland

[Hidden in reply to lenamm]

hi Lenamm, how many years after dx of PD did you get FUS?. is this now available just recently in texas.did it relieve stiffness in your affected arm? thanks

[lenamm in reply to Hidden]

The surgery I had is only offered in Switzerland - it did get rid of my left arm severe dystonia.

[Drummer67 in reply to lenamm]

Thanks lenamm,i signed up for a newsletter on Fus and read more of your postings.I am so grateful for your advice and thrilled you are so improved. Where are you from? I am in Madison, Wisconsin. This is a good way to start my morning.did you tx one side only ? Can you do other side if needed? Can you do it again on your treated side? I would love to loosen up my left arm as I am a blues drummer.i am very early in my parkie journey and bicycle most days and downhill ski and work part time. Thank for your valuable advice. Mike

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[lenamm in reply to Drummer67]

Hi Mike,

I had one side done and hope to have the other later this year. Once a side is done it is permanent so there is no need to do it again. PTT is Switzerland is the only FUS surgery that can be done on both sides. Consider joining our facebook group facebook.com/groups/6095308... . There are about eight of us on it that have had various FUS surgeries for PD.

[lenamm in reply to lenamm]

I am from Seattle, WA. Have had PD 5.5 years - had surgery a little over a year ago.

[Drummer67 in reply to lenamm]

Hi lenamm,mike here from madison,Wi. I would love to talk to you about your surgical experience.i joined the FUS group and am not clear on some stuff. It seems like the FUS is much less invasive than DBS,but if you had only one side done I take it you did it in the states and not Switzerland. That is where i get confused.my email is [e-mail]. thanks for your input.I am very happy for you on your great success with the surgery.

Sincerely

Mike

[Drummer67 in reply to Drummer67]

Aka asDrummer67

[lenamm in reply to Drummer67]

Hi Mike, I had PTT which is only offered in Switzerland but it is much safer to have one side at a time. I plan to go back for side two but the border closures are making that difficult.

[lenamm in reply to lenamm]

Feel free to post in the FUS group as we have others who had the two US available surgeries who can answer questions on those. In my opinion PTT is the best because it can be done bilaterally but you need to be able to get to Switzerland.

[Drummer67 in reply to lenamm]

Thanks lenamm,i have been reading lots on the subject. Thanks for pointing me in the correct direction 😊👍

[hopptimisten]

Hi, I am lucky to have a very well functioning DBS. Remember that it’s not a treatment that cures but it takes down the symptoms. If I turn of my DBS if I get very bad, shaking - as if I didn’t take my medication.

So if you pull it out you can expect to be worse in my case much worse than when it was installed.

In all surgeries there are risks, even in the head.

Happy day to you all!

[MarionP]

lenamm, yours is the exact question I have been wondering.

[lenamm]

For myself I already had successful FUS surgery, I'm not considering DBS. I have had so many people talk about DBS being reversible but have never heard of anyone were it was reversed "successfully" so I'm looking for at least one data point that this is possible.

[Hidden in reply to lenamm]

Hi, well guess what, infection again, this time everything had to come out. I'll let you, how I go.

Sinemet intake has increased by over 50% so far.

[Hidden]

I have recently had DBS surgery, I got an infection that appeared to clear, came back, appeared to clear, came back again, cable and battery/device taken out, months later put back in, presently on significantly reduced meds.

Point is I had months were I had only the leads/electrodes inplace. I went back to pretty much where I had been pre first surgery.

Technically reversible but it is surgery so never the same as before.

[felixned]

Lenamm, my neurologist just surprised me with the suggestion that I consider dbs. I asked him if it was truly reversible. He told me that typically it's just turned off. He said that it's physically removed only if there was mechanical failure or compatibility issues. He gave me a write up on the procedure that mentioned the alternative surgeries . They didn't mention PTT however.

Felix