Spasmotic torticollis/cervical dystonia surgeries...

[Rj]

Has anyone else with CD had denervation? It looks like I will be going through this procedure in April, but would like to hear from others who have experienced prior to my surgery. I want to know how it worked for you? Side effects? I asked the dr lots of questions, but I know there are things that people experience that I could not even think to ask about.
I would also like to know if anyone with CD has had DBS and how that worked for them. I understand that DBS is still not proven for CD, but want to learn more. Thanks in advance for any insight and help you can provide!! Rj

[Angie]

Dear RJ,

Wish i could help you, but have zero experience with your question. I do have a touch of CD and mostly essential Tremor that I am researching solutions for. Any knowledge that you would like to share that you have already learned about your procedure would be very helpful.
I have not had DBS but have friends that have and one friend that is getting it March 6th at Stanford. There are DVD's and lotsa people on WE MOVE that are in the process or just completed the procedure.

Be well~ Angie

[Rj]

Oral medication was horrible! Insurance comanies require that Dr's start there, but they were a nightmare for me! Botox was helpful with the pain for me, but did not help me with my mobility. Botox seems to work for a pretty high % of people. If it works for you it's inexpensive and it last for 3 -4 months.
From discussions with a few neurologist/nuerosurgeons they recommended that I have selective denervation before thinking about DBS. My neurologist is at Duke and the Dr who performed my denervation helped pioneer the procedure, so I went to the right people. I hope you find relief and let me know if you need more advice or help! Hope your doing well!! Rj

[Barbara Brooks]

Hello Rj, I was diagnosed with cervical dystonia 6 years ago and have had denervation surgery with a Mayo Clinic doctor in Rochester, MN. 5 years ago. Before I found him I had gone through 14 different doctors who did not know what to do with me when all their pills, shots, therapies, didn't work. One would send me on to another Dr. until I found a neurologist in Des Moines who knew I had dystonia and referred me to Mayo. My head was being pulled to my right shoulder. The surgery straightened my head so it was successfull. I was in the hospital there for 5 days, then went home. The care was excellent ! The incision was at back of my neck and straight up and across to my right ear. I have permanent numbness and tightness in my head as nerves were cut and removed as well as the splenius muscle. The problem now is that my dystonia has spread into the muscles each side of my esophagus so they can do no more for me. Botox is not for me as I had 10 injections recently that caused a violent reaction inside of 24 hrs. like stomach flu and I was ill for 3 days. I've had myobloc and botox prior to the surgery 6 yrs. ago that didn't work at all. Now the nerves are regenerating and tangling around a muscle that presses on the occipital nerve that causes a shocking effect like touching a hot wire fence and zaps me clear up to the top of my head. I did not realize that half of my head would be numb for the rest of my life. On the other hand I did get the problem resolved except that the dystonia has spread and progressed into another area so I have a different problem. I have accepted this and am OK with it as I can still function, driving, shopping etc. but my head is now being pulled downward and it is impossible to hold my head up. It is very tight, hard as a rock and massage does no good as that is uncomfortable so nothing can be done. I will not have DBS as that freaks me out so I will tolerate this best as I can. I hope you will have a good experience and have a good doctor. Let me know what happens, Blessings to you ! Barbara Brooks in Missouri

[Rj]

You may want to try botox again. I understand that it can effect you adversely, but it may have simply been an initial reaction. I would have taken three days of sickness for three to four months of good health. I also have numbness on the back of my head in a pretty big area. I've gotten used to it already. It's certainly weird.

When they did you procedure how did they sever the nerves? For me they cut the nerve, clip it the one half and then they turn the second half backwards so if it does regenerate it grows the opposite direction and cannot reconnect with the other half. I sure feel for you! It's not easy to deal with, but hopefully you will find some relief!! Rj

[noelv]

I would think a lot before undergoing an irreversible procedure. If they get it wrong (wrong nerves, muscles, etc) you could get a lot worse and there is no going back. Have you tried chemica denervation such as Botox A or Myoboc? Uness you are lucky enough to find some one with a ot of experience, it coud be a prolonged trial and error process that coud take a year or more since Botox lasts 3 months. It wil be a work in progress unti they find the right combination of dosage and locations. If they get it wrong, you can try again. I strongly recommend against surgical denervation unless its a last resort. If you are a DBS candidate, surgica denervation may eliminate you. If DBS works, you will have an odd collection of paralyzed muscles that you'll never get a chance to return to normal. With Botox, DBS is still a possibility. I would go for DBS before surgica denervation.

[Rj]

I did try both myobloc and A. They helped with the pain, but not the mobility. My Dr. was very careful and tested my nerves to see which were affecting me. I have dystonia in 5 different muslce. groups. For my selective denervation procedure they were able to denervate two of the affected muslce groups. Two of the other muslce groups they used botox to treat them. The results have been spectacular! My Dr. was even surprised by the results. My neck muscles had gotten so strong and were pulling on my spine so much that they partially twisted my spine. Selective denervation is typically not as effective for people with twisted spines (I didn't ask why). With the exception of some scars youcan't tell the difference b/t me know and before I had dystonia. I would certianly recomend selective denervation to the right people going to see the right Dr's. You can have DBS after denervation if necessary. Your right about those muscle groups being gone and they won't come back, but you have 65 muslce groups in the neck so loosing two isn't that big of a deal.

[noelv]

Been gone for a while but 3 things:

Your doctor was surprised by the results. Something in my head says he should have not been surprised.

If he knew which 5 muscle groups were affecting you why could he not use Botox to denervate those? It seems knowing which muscles is the difficult part.

Yes, there are 65 muscle groups but not all of them are the same size or serve the same purpose. Paralyze the wrong one and you're in bigger trouble. It was risky and you are very lucky. Even with DBS, those muscles are gone.