The Orthostatic Tremor Forum (archive)

Hi! Annetta: What an wonderful experience with spinal stimulation and will be of great interest to those of us with OT. Do you wish for me to post your letter on the website and send the message to Dr. Torres......we have had a conversation about spinal stimulation before and know he will be very interested in your experience. Thank-you very much, Gloria

Begin forwarded message:

Hello gloria,

I went to Omaha twice and was in the study with Dr Torres, the
last time was with my husband in 2013.
I have been going to the CLEVELAND CLINIC for the last 14 years, and the
diagnosis of OT was made there by Dr P. Sweeney. He prescribed increasing
doses of klonopine, he retired and I went to another Dr there. He wasn't
happy with my dose of 6 mg day of klonopine and suggested I see the
neurosurgeon. He said we could do a trial of spinal stimulation and see if
helped. The surgery was done Nov 14, though medicated I was awake through
the procedure. I could feel a buzz in both legs, they had me stand with
frequency set very high and I could not stand more than 30 secs. They
turned the frequency down to 30, it it was more like a quick thump, but I
could stand for over 5 mins. After teaching how to adjust it as needed,
they sent me home for a week. It worked very well. I even went shopping
alone and stood and went through racks, and went to Home Goods, which was
always a place I avoided, with all the breakable sand crowds of people.
Next I went to Michael's, the craft store, thought I would test the device
and turned it off before I went in. I strolled to the back of the store and
my tremors were back. I sat down, reconnected it and within a few minutes I
was fine.
They removed the stimulator yesterday and told the Dr how much difference
it made. We were hoping for 30- 50% improvement, but it was much better
than that. I am scheduled to see surgeon in 3 weeks fo let this heal, and
have a date of Dec 14 to implant the permanent device, pending insurance
approval. Why would they pay for the trial and not the permanent device.
My other goal is to reduce or get off the klonopine as I am noticing some
side effects.
This is promising and lasts up to 9 years before battery has to be changed.
This is much more than I expected, and wanted to pass along the
information. If you want more information my doctors said they would be
happy to talk. I am the first OT pt they have done this on, mostly for pain
management. I can't wait until this is done, as my legs are shaking the
same again.
Please pass this along to Dr Torres and the OT group.
Thank you
Annetta Muir

Hi! Annetta: I just looked at the calendar and remembered that next week on Wed. Dec. 14 you have a date to have implanted the permanent device of Spinal Stimulation for your OT and I'm certain you have a lot of OT friends here on the website including myself wishing you the best results and thank you for introducing us to possible help for others with OT. Looking forward to a great report, Gloria

With Annetta's wishes for all our OT friends to know is her continuing story with Spinal Stimulation which is not what she and all of us were hoping would happen:

Gloria, " I had the spinal stimulator trial November 14, for one week. It worked as I could stand 5 minutes in one place move a little and stand again. They removed it on November 21, and my tremors were back right away.. Surgery for permanent spinal stimulator was planned for Dec 14. I was seen by my surgeon today and told me it was denied insurance. The trial was approved by my primary insurance, but they use an outside resource for further approval. Dr Macado, who says he knows Dr Torres, said they will work on getting it approved and sit tight. I feel like thy dangled a carrot in front of me and tore it away. The problem is this surgery has only been done for pain relief, and there is no CID Medicare code for OT, it was denied.
I was able to shop and stop to talk to people, shower... It was great. I hope he can expedite the approval, but didn't seem possible, since first done. Maybe a few more weeks. I am very disappointed with this set back and only hope this can be resolved.
Please Gloria feel free to pass this along to Dr Torres and our OT friends. I have not lost hope, it is just paperwork, and some people need to be educated about OT.
Have a happy holiday season, I was hoping to be recovering then. Prayers and hope."
Annetta Muir

This sounds like an interesting and promising breakthrough. Is it possible to get more information that I can pass on to my doctor in Boston. Dr. Torres contact info or Dr. who performed surgery? I'd really appreciate some more info. Thanks , Margie

How can we receive more information about the Spinal Simulator performed on December 14 th. I would be very interested in more information. Jack Pulliam thank you.

Jack: According to what seems to have happened Annetta was denied insurance coverage for "permanet" spinal stimulator surgery) and did not have surgery on Dec.14 and was only covered for the "trial spinal stimulator surgery" on Nov. 14. Gloria

Dear OT Friends, yes I has spinal stimulator surgery trial Nov 14,2016, with great success. The probe was left in for one week and I had immediate results, once the stimulator was callibrated to lower frequency. The trial lasted one week, I was able to regulate it when standing and sitting. I was able for first time in years walk and shop in the store. Look through the racks. It was like a dream, my anxiety decreased and I was able to stand for 5 minutes. I went to a book store and looked through books, and when I felt unsteady I walked a few paces a felt better.
My surgery was done at the Cleveland Clinic, by Dr Andre Machado, I was referred by Dr Itin, neurologist. My husband and I went to and ET seminar., sponsored by Cleveland clinic, and told the people there I had OT but was interested in any way they could help. My neurologist, who diagnosised me, Dr Patrick Sweeney from Cleveland clinic retired and I was looking for new doctor to understand my diagnosis and take me on.
This seminar was put on by their PT and OT departments. They put me through a battery of tests and videoed me and made the appointment with Dr Itin. He was very nice, but asked me who was going to write my script for clomazapam. I told him, hoped he would, at 6 mg day he shook his head. He exam end me and put me thru my paces, and agreed I needed the med. he also asked if I was willing to see the surgeon about spinal stimulator trial, as well as neuro psych person. He explained they acted as a team in their plan and treatment. I followed through with all.
I had the surgery for the trial, which was amazing, for one week. Dr Machado set up surgery to implant permanent stimulator, Dec 13, 2016. But called me a few days before saying my insurance had denied the surgery. They would fight it, but denial from Medicare states this surgery is fo intractable pain only. I felt like a genia pig, why do a trial without real plan to go ahead with permanent surgery.
I am depressed and feel used, like a carrot was held out in front of me and pulled away. I hope they are able to get past this denial, as OT has caused my intractable pain. Two traumatic falls, with broken shoulder, broken foot and another break in other arm caused acute pain, which subsided. But the pain of the tremors in my legs continue.
I would like to know what Dr Torres thinks of all this, and should I continue to work to get this surgery done? I know not enough cases are out there, I am frustrated.
See you in September, hoped to have something else to offer.
Thanks Annetta

That is very discouraging to hear,Annettarn. did they give you any idea of how much it would cost
without insurance coverage? I really hope you can work something out. I have passed your experience on to my doctor
and will discuss it with him. Thanks so much for being "the first".