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Lamppost

Essential tremor and DBS

11 posts in this topic

I am a 50 year old male with essential tremor (ET). I have had since my early 20's and over the years it has gotten worse. I am on primidone 750mg/day and propranolol 160mg/day. This is controlling it a bit, but I can't write with my right hand anymore, so I use the left. The consultant I saw in Feb made the offer of DBS - because it works - was his term.

But as the bread winner and two young children to think of, I am not sure whether I should have the op. I know I may have to have it in 5 or even 10 years when the tremor is much worse, but I don't know whether to have it now.

 

So my question to you all ( knowing so much about DBS ) is what is the time scale for DBS? How much time do you need off work? What sort of things can't you do after DBS - can you use leaf blower backpack? Are there any limitations etc?

 

I hope you don't mind me asking, it's just troubling me what I am going to say to the consultant when I go back to see him in August.

 

Regards

Lamppost

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If your Canadian there is a great clinical trail going on at Sunnybrook Hospital by Dr. Swartz....

 

Let me know and I can send you the info...it's really remarkable what it does for ET....

 

Discovery

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For et think they use different brain target compared to parkinsons. Dr okun would be better able to answer in his forum

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I'm aware of the different targets, because I wrote Dr. Okun regarding this trail.

 

It's best suited for ET...

 

It's great to take tips from others on the Forum that's what it's here for..It's up to us to do the research!!

 

D

Edited by Discovery

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I had DBS surgery a year ago. I had it done in a MRI machine, because I could be unconscious during the surgery. That meant surgery not 2 parts. First in insertion of the tubs in the brain j. Then a return in a month to have the battery installed. I was out of the hospital the next day in both surgeries.

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Hi thanks for your reply. But if you could just tell me how long you needed to take off work to get all this done? As I need to know what impact this will have on my work and usual day to day stuff. Thanks

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Lampost -- talk to your surgeon.  

 

Two surgeries, about 10 days apart.  For first one, brain electrodes, overnight in ICU.  So in Theory two days before you are back to a desk job.

 

Second surgery (installing 'battery' and wires) is often outpatient (one day).  

 

Biggest complication is infection of the battery pack. If that occurs, everything comes out! Yes, batter, wiring, electrodes. If you are doing a lot of

physical work or lifting heavy items, take a few weeks off to relax and take it easy.   I count my blessings that most days I work from home, roll out

of bed. Make Coffee. Log in and start my day around 4AM.  Works for me.

 

NOTE: spent yesterday with the Neurosurgeon talking about DBS. I have a lot to learn, but that is still fresh in my mind.

Edited by TexasTom

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Hi Texas Tom

Thanks for the reply - that was some good information. I am not sure if I want it just yet, as the medication route seems to be controlling it for now. But alas, I don't think its a question of if anymore. I will try and hold out as long as I can, but the tremor will get worse as I get older, so will just have to see how thing go.

Kind regards

Lamppost

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Hi Lamppost,

 

I had my first set of surgeries in late Jan and early Feb of this year.  The surgeries for me were very easy. The regulator surgery was  the harder of the two, my chest hurt for about 6 weeks.  Now that it has been about six months I wish I had not waited so long!  My dystonia is almost completely gone except for the days my body reminds me that I do have YOPD!  I have scheduled the second side for July 21. 

 

What made me realize my life had changed for the better was when my husband said it was nice  to have his wife back.  I can walk like most people, nothing against the zombie walk, I can write easily, type, mend clothes..... things I have not done for years.  I sincerely wish I had not waited "until my symptoms were uncontrollable with meds."  I lost many years of living life; I was existing only.  Deciding to have the DBS surgeries is very personal and everyone reacts to DBS differently but for me I am grateful that I chose this option. 

 

I wish you a life of living, not existing.

Don't Ya Know

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Lamppost. I've posted a few times on this forum & on Neurotalk about my DBS experiences. They would probably be useful for you to read. But as to your question: I'm retired & didn't have to face the issue of how long you'd need off work.  But I would say it varies depending on the person, the type of surgery (awake or asleep), how many surgeries (can be 1, 2, or 3), whether there are any complications (infections, stroke, etc.), and how many sessions are needed to get you optimally programmed (hard to predict), and your type of work.

 

In my case, I had 2 awake surgeries in December 2015 & January 2016, with the battery installed while asleep at end of 2nd surgery, had no complications, stayed in hospital overnight and felt physically fantastic & euphoric & like I was 20 again the next day, apparently due to effects of the surgery lesioning itself, not DBS, since I hadn't even been "turned on" (activated) yet. So in theory, one could go back to work soon, but programming may take you through many changes over several weeks or months, some not so good. Also, my surgeon told me to wait several weeks before doing anything strenuous, like exercise, lifting, etc., to allow healing & avoid brain bleeds & other complications.

 

Just remember: Like PD, DBS experiences & outcomes are different for everyone. I'm very glad I did it, but it took awhile to program it correctly and still isn't perfect. Some things got better, some things got worse. But overall, definitely worth it for me. If you want to read my other DBS forum posts, let me know & I'll give you the links.  Best of luck.

 

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