20/20 Interview on DBS and Dystonia

[pooh2b]

God bless, I jerk from seizures petit mals their called but WOW, this is much worse. I'm so glad that the surgery worked for him!

[voodoomoongurl]

i get these same symptoms but they only come on every now and then . whats that mean?

[canuckfanjosh]

did you notice the lighted pyramid in the beginning seconds, with the capstone missing?

[TubofMagic]

How much does this surgery cost? Will Medicare or Medicaid cover any of the surgery cost?

[bl4ckhole]

A lot but it is fda approved now so medicare or medicaid should cover it

[sofakingdum69]

I would like to try to cure this disorder, I have an idea I'd like to try, I think it would work. Really sad when they show the artificial additions to his body. He is standing straight but kill the tech and he's back, like flipping a switch. These guys are smart the guys who created the devices are genius.

[montereyjak]

Actually with many people, they can be shut off after some time and the effect continues.

[nickie74]

can't believe some of you are even talking about the scars...I read the comments before seeing the vid and was expecting them to be large and gross...but they were nothing at all...god women get worse scars than that just by having a baby..

So pleased he's able to get his life back

[citytails]

Who cares about scars when your life has been given back to you. My husband has scars but they are badges of his new life. Our new life.

If it is that frightening, there is always plastic surgery.

[NeneLindo13]

well to all of us with this dreadful disorder,, all i can add is lets be happy we are all still here..never ever lose faith in the one's who helped us gain our live's back..

i know its slow but never the less its up to you...........................­...

Your Friend

Nene Lindo

[bl4ckhole]

AMEN to that !

[bl4ckhole]

Oh believe me i can live with the scares. It doesnt bother me until they run out of spots to put the battery because of the scare tissue almost 10 times on the left side

[JamesCnotactYelena]

mean I had both lol sorry my fault

[bl4ckhole]

dbs does leaves scares, believe me i have many but well worth it

[melm14]

I have this. Mine was a little bit worse though. I had the surgery when i was 12, and i dont regret it at all. it works amazingly.

i have now 16, and can do anything everyone else can do. The only downside is the scars left, and having to have surgery every 6 months, but in my opinion its way worth it.

[JamesCnotactYelena]

dbs doesnt leave scars, u probably meant pasllidotomy. U had both :)

[melm14]

yeah the dystonia doesnt leave scars, its the surgery that does.

[JamesCnotactYelena]

Deep Brain Stimulation doesnt leave scars.....

[melm14]

The Batteries are in my chest and abdomen...so yes the surgeries do. I have huge scars on my chest and stomach area because of the battery replacement surgery.

[JamesCnotactYelena]

I have only one scar on my belly (few on my head and two inside my head after having pallidotomy). My battery needed to be rerplaced once in 3 years .... unless they put me one that lasts longer. I'm a girl but I don't care about having scars, as long as I can cramp less and not take that shitty medication that made me a tearful zombie!

[melm14]

Yeah they are trying to get me the one that last longer. I am a girl also. I dont mind the scars either. I have learned to deal with them.

[bl4ckhole]

I am very happy it worked out for you!

[undertoes]

doctors are amazing.

[bl4ckhole]

I would  try my life with these doctors

[JamesCnotactYelena]

I didn't even have to... I mean, who cares about scars when it helps you live like a human

[lonestardehy6]

with god there is hope.

[bl4ckhole]

Indeed

[Biggie1231]

now if DBS does not work is there other alternate Surgery's?

[bl4ckhole]

yes but dbs is usually used as a last resort

[KILLAMANJARO3]

there is another surgery called gamma knife. i have essential tremor diagnoses 25 years ago in head and went to other areas of my body. 25 years later diagnosed with dystonia, one said cervical, another said idiopathic and another said myoclonus dystonia and possible ET as well. i have been denied 2 times for dbs but shall push ahead. i am also trying for gamma knife.

[dj2937]

great video gives me hope, son having surgery soon, tks for sharing

[bl4ckhole]

hope everything goes well with your sons surgery keep me up to date as to how it goes

[Biggie1231]

Now with Dystonia in the early Stages is there a way the control it ?

[bl4ckhole]

Well, dystonia is still a mystery to many people how long ago was she diagnosed before having dbs and how has she responded to dbs? How long has it been since she has dbs done as well?

[Biggie1231]

my girl friend has the same type of dystonia she just had the DBS she can walk alot better

[bl4ckhole]

yes it is truely is a miracle surgery

[colerain777]

I have dtstonia in my neck, so I found this very interesting