Deep Brain Stimulation

[gloria]

Dear Tarus 456: You have done the OT community a great service by posting your horrific experience with DBS, we are all friends here listening to you. I feel so bad for all you have been through. It is time that research look for safer and more life restoring treatments. My sincere thanks, Gloria

[Di Di]

Hello ,
I may be way off beam here , and on the wrong forum ...but thought deep brain sort of fitted...

Has anyone out there heard of Dr Paolo Zamboni?...Director , Centre for Vascular Diseases , University of Ferrara Italy ......
He has been clearing veins or is it arteries of iron deposits ,getting stunning results with MS sufferers ........saw a TV report here in New Zealand ..it was filmed in Australia and Italy?
could one of you out there , look into it ?
I did google the good Docter , there is plenty there to go on !
~one just never knows ..may well work for OT!!~

researching is right out of my league ...I wait to hear ....and no, its not called passing the buck!
its called planting a seed
thank you
DiDi NZ

[Ann Dodd]

Hi Everyone,
I have had DBS about 4 years ago for Primary Gait Freeze Ataxia which is freezing walking down slopes,shiny floors,crossing roads and freezing half way and much more. It has been a success & can now do all those things easily. DBSfor OT, I have never heard of it, Will check with Professor Silburn & let you know, The operation is very costly & we were after Medicare, Private Health rebates, out of pocket $20,000 . I would seek a second opinion before doing anything. What about taking Lyrica. ?
It certainly helps most of the ladies at the Sydney Conference.Take care my friend.

[BillBeasley]

I have been diagnosed with Orthostatic Tremor for about 3 years and with Orthostatic Myoclonus for about a year. They tried several medications and none of them worked, some made the condition worse. As a last resort, Deep Brain Stimulation was suggested. I was somewhat apprehensive about it, but since my condition was worsening rapidly. I decided to go ahead with it. I had the initial surgery on June 25th, 2013 and the follow up surgery on July 2nd. I was able to walk almost immediately and the tremors and Myoclonus jerking are completely gone. I am now having physical therapy to help me get my strength back. I was in a wheelchair for about a year. I'll give you more details, if you would like for me to. Bill Beasley

[BillBeasley]

I have been diagnosed with Orthostatic tremor and orthostatic myoclonus. I had deep brain stimulation surgery about a month ago and it was highly successful. I was wheelchair bound for about a year prior to the surgery. Now I can stand, walk, and do not have any tremors or
myoclonic jerking. I'll be happy to share my experiences if anyone is interested. Bill Beasley

[gloria]

Hi! Bill:

Thank you for posting your information and I'm glad that you have found some relief, choosing DBS must have been a difficult decision.

You mentioned that you were diagnosed 3 years ago, did you have symptoms prior to that or was the onset quite fast moving from OT to Myoclonus?

Do you remember if there was an EMG taken for your OT diagnosis and what the frequency was?

Best regards and wishing you continued good health, Gloria

[gloria]

Bill: I'm just checking in for it has been sometime since you had DBS and we have not heard from you and I was wondering if you are you still enjoying the results you first experienced after the procedure or have there been changes. Wishing you the best, Gloria

[GraGra]

Hi All....I live in NSW Australia and a TV personality has a brother with Essential Tremor he was shaking so bad that he wasn't able to hold a cup of coffee or a glass of water let alone pour the water from the kettle into the cup. He was shown on TV before and after DBS and the result was amazing. There was no sign of any shaking at all. This was on TV about 18 months ago so I don't know how he is doing now. I hope he is still as steady as a rock. I told my Neuro about it and he said we could talk about it later as they do DBS in one of the local hospitals. I am seeing him this coming Wednesday 27 Nov 2013 and I will let you know if he tells me anything useful....Graham (GraGra0.

[rdurhman]

hi Bronwen,

welcome to the forum, and posting your questions.

"Has anyone had experience with this surgery?"

that is also a very good question to ask the doctors that are recommending DBS, have they had any specific success with OT and DBS? and would their patients be willing to talk to you about their experience and results?

regards,

I am new to the website and have trouble moving around in it. My name is Rita and you can look up my profile. I had DBS surgery in Nov 2012 at Mayo Clinic in Rochester, MN. My friends and family tell me I am 75% better. I wend from being able to stand for 30 seconds to being able to stand for 3-5 minutes.

[admin]

Hi Rita

I am new to the website and have trouble moving around in it.

Looks like you are doing a terrific job navigating the forum. But, with over 3500 posts it can be daunting, so don't hesitate to ask if you do get stuck anywhere. Feel free to explore the website and thank for you posting.

best regards

Jeff ( admin )

[Ann Dodd]

Hello Everyone once again. It has been a while & I have had ups & downs. (I guess you can all relate)
My DBS is still working after nearly 5 years.(for Primary Gait Freeze Ataxia). We went for a boat cruise to New Zealand & had a wonderful holiday. I was not coping very well with my OT. I think I was exhausted before the trip & it took me the 2 weeks to get my strength back.
We got off at ports & did heaps of sight seeing. Beautiful place & people. We visited Di Di and had a wonderful day with her, She is a marvel and we enjoyed every part of the day with Di & her husband.. She is a wonderful cook. (Yum!!)Thanks Di xxx
Went to a new Neurologist who increased my dose of Lyrica. By the time I got back from the trip I could walk & I am still walking.
My DBS is still working so fingers crossed hope it keeps going.
I wish all the people that have had DBS for OT & are thinking about it the very best of luck. I hope & pray it works for you.Enough about my problems . I look forward to hearing how people with DBS are progressing.
All the best my friends.
Ann

[gloria]

Hello Ann: Thank you for your update but sorry DBS is helping the Primary Gait Freeze Ataxia but not with your OT however you find Lyrica helps with OT . Nonetheless, you had a great trip and lucky you had a chance to visit with DiDi again. DiDi is a very special person and so talented in many ways and now I hear she is a great cook too!!! It was good to hear from you, Gloria

[dalepbaker]

I just got diagnosed with Orthostatic Tremor,had them for years not diagnosed til yesterday @ BJC in St. Louis ,Missouri.
Believe me,kinda a relief to know I am not nuts .
Just a thought, I am a electronic and computer guy by occupation.
Not trying to go Frankenstein,but here it goes. What not make a negative nano sound generator and implant in our head to cancel the frequency that is causing the problem. Yes,it would be tricking our brain,but the drugs are masking the issue,not curing it.
Just a thought I have been waiting to say for over 10 years.
Thanks

Dale P. Baker

[gloria]

Dale: Welcome to our OT Community and thanks for adding a bit of humor with a Frankenstein solution to our problem. In reality I wish you were coming to our Omaha research / meeting so you would enjoy meeting other OT friends and how they are going to particapate in non-Frankenstein research. Also you would learn how others have been coping with OT in our lives. Being with other OT'ers is a best way of knowing you are not nuts anyway !!! In the 10 years that you had OT symptoms how were you searching medically for an answer. Question 2 .... when you were finally diagnosed did you have an EMG ??? Nonetheless, keep us posted and good to have you aboard, Gloria

[dalepbaker]

They have been trying to diagnose me for over 2 years and over $40,000.00 in tests,the Neurosurgeon finally decided to send me via a referral to Dr. Alozi at Barnes Jewish Hospital in
St. Louis. He had reviewed all of my tests of tests. Within 90 minutes of his very through exam told me I had what is called Orthostatic Tremor. I have had tons of all kinds of exotic testing.
I am blessed with very good insurance,it cost me less than $200.00 for all the testing. The first drug my doctor gave me to try ,knocked me out for 3 hours.All joking aside I have done extensive research for years on my negative nano sound generator. Almost had a doctor willing to try the beta implant,but his insurance halted the trial. I honestly think it has some value.
I am glad I found this site too.

Dale