Deep Brain Stimulation

[Tonyswife]

Hello I am new to this forum....

My husband is living with TS and has been since the age of 8 he is now almost 37.. he has always worked with his TS but as he ages we have noticed he is having more and more physical aliments do to his motor tics.. mostly continuely sore muscles and joints from the jerking motion he makes with his arms.( very strong) . He is finding it harder and hard to go to work and make it thru the day.. He is a Truck driver for the recycling Co. My questions are two fold.. One has any adult in this forum had to resort to claiming SSI for their inability to work do to their TS.. and second I have read about the treatment used for Parkinsons that has now been used for a man with TS and had almost 100 % relief from his tics. The treatment is called Deep Brain Stimulation.. Has anyone on this forum tried to find out about having this operation performed?

Thanks for reading,

Tonyswife

[Chemar]

Hi Tonyswife and welcome

 

Although we do have some adults with TS who post here....most of us seem to be parents using alternative treatments to help our kids.

 

My son visits a chiropractor periodically to restore the skeletal balance that the tics can often knock out.

He also finds that soaking in a warm tub with 2 cups of Epsom salts added to the water really relaxes the muscles, and actually also diminishes tics.

 

If you browse around this Forum, as well as the whole Latitudes site, you will find a lot of really useful information to maybe help your husband.

 

Many of us have found great benefit in eliminating artificial foodstuffs, as well as adding special vitamins and other supplements to the diet, controlling yeast(Candida) overgrowth and so much more that you can read about here.

 

 

May I also suggest that you post this question re the DBS etc over on the BrainTalk TS Forum.

there are many adults with TS represented there and there was a lot of discussion on the DBS technique recently

here is the link

http://brain.hastypastry.net/forums/forumd...aysprune=&f=253

[Guest Im with you....]

I for one have severe, explosive and violent motor tics-

along with many mild motor tics- and many vocal tics......................

I give myself bruises, fat lips, and black eyes even...

 

I am currently on the M.S.D. (most secerely disabled) List for disability- and in the process of applying for S.S-

 

The state and doctors here have deemed myself--unfit for employment--for obvious reasons-- I infact only found out that TS,ADHD,OCD,SID, Irlen Syndrome were the causes for all my trouble--I am 27--and only found out 6 months ago--

 

I got laid-off from work only 4 days before the doctor's appointment--that concurred my TS--it is my hunch that they did this because they knew I had "something" wrong with me---and my boss knew I was going to see the doctor about my tics---hence to avoid legal issues---they let me go before the appointment---based on the fact that my work performance was slipping-duh-(for my symptoms got worse)--had they known I was disabled--they could not legally let me go--for my performance was suffering because of my TS-

 

anyway...........

 

Your husbands has got some guts---to tough it out over all these years--

there is help by the state out there--you have to roll up them sleeves to get to it somethimes--but---it would seem that your husband is similar in severity as I--

I was working in retail/customer service--it was a nightmare the whole way--

however-perhaps being a truck driver may actually work better--if his tics do not impair his driving--(mine do)-

 

anyway--This is a real and valid disorder that warrents understanding in all fields--none of us should feel ashamed or have too much work ethic/pride--to seek-out help from the State--

 

I still have trouble accepting the fact--I cannot work--or really be apart of society-

but--I remember--oh,yah.... thats right... I have a incapacitating disorder--

 

it would be hard for anyone....

 

Your husband perhaps worse or better than I---has covered more ground living and dealing with this than myself(10 years longer than I)-to that I have the utmost respect for!-

 

anyway--

Eric

[Guest Guest]

I checked my notes from a seminar on implantable med. devices for my work; I hope they are not too cryptic!

 

*use most eff. for Parkinsons

-- Parkinsons tremors:

--- relatively low freq.

--- tremors when limbs are at rest not when moving

-- Essential tremors

--- rel. high freq.

--- prevalent during limb motion

* implant

-- thalamus

-- lead/chest module

-- pt. analgesia

* effectiveness

-- more effective when most tremors on one side of body

-- significant but not complete reduction/elim. of tremors

-- not effective on muscle, joint, or ambul. problems

-- deemed effective in 1/2/- 2/3 of patients

-- limited long-term sample due to new treatment modality

--- but >5 yr

--- side-effects

----- inconsistent in studies but

------ no deaths or serious side-effects due to DBS per se

------ FDA approved

* coverage

-- specialized hosp's

-- inconsistent med ins but MD specialist recommendn needed

* refs

-- topical on web

-- ! consult specialist !

[Dusterbug]

I am going to a neurosurgeon next week to discuss and hopefully schedule my DBS for my Tourettes. I am also suffering pain from my tics. My neurologist told me that I am a perfect candidate for the surgery. will keep you informed on my progress.

[Guest Guest_teach1]

Hi, I am 49, have had TS most of my life, i was on haldol for 20 years and did fine, until 2 years ago i got blepharospasm (constant spasming of the eyes) and literally could barely see. Recently I have found out that i have dystonia caused by the meds i was on. Even tho i still have TS and some minor tics, the major problem is now the eyes, and neck spasms and it is also affecting my voice (spasming-and voice literally stops for 5-10 seconds). It is tough, as i am a teacher, but had to go to 1/2 time last year due to all this. In Canada it is a different system, but i get Long Term Disability from an insurance i paid into thro our school board for 15 years. Now its $400 a month less than my regular full time salary, but we make do; it's better than 1/2 time pay!! You should have no problem getting some sort of disability pay, he needs his arms big time for driving a truck. they may try to have him do a different type of job where he doesn't use his arms, its hard to say. It takes a long time, and for me quite a few Drs letters, but it was worth it. I know many people on the dystonia Bulletin board also talk of DBS surgery, it sounds so tempting. I think 1 person has had it done in California, for dystonia, and he says he has had a total recovery. Good luck!! teach1