Search found 10 matches

by annettarn
Mon Nov 02, 2020 2:18 pm
Forum: OT - Surveys
Topic: Survey # 2 - Thoughts, Questions, Feedback
Replies: 2
Views: 629

Re: Survey # 2 - Thoughts, Questions, Feedback

We would like to get some feedback from those who have seen the survey. Please share any thoughts/comments, etc. 1) Was it easy to understand? 2) Was it informative? 3) Is it something you will share with medical professionals? 4) Was it too much/not enough information? Please be honest. We would li...
by annettarn
Thu Nov 29, 2018 9:53 am
Forum: OT- POLL
Topic: Medication
Replies: 3
Views: 2647

Re: Medication

Hello and Welcome. Have you had the chance to read the Global Survey that my husband and other OT patients worked on. Its very informative about OT and Medications. Click on the Website button at the top of page and then click on the "New OT Survey" button. Many people from this forum and other grou...
by annettarn
Tue Apr 10, 2018 3:21 pm
Forum: 2017 Omaha OT Meeting and Research - Dr Torres
Topic: Spinal cord stimulation trail successful but denied permanent implant
Replies: 5
Views: 4157

Re: Spinal cord stimulation trail successful but denied permanent implant

No, I never did get the spinal cord stimulator implanted. My doctor put in for a reconsideration, which was also denied. After that he did not even want to attempt to go any further. I got relief from the tremors for about 5 minutes, before they started again, but after I moved a few steps it worked...
by annettarn
Mon Sep 18, 2017 11:12 pm
Forum: 2017 Omaha OT Meeting and Research - Dr Torres
Topic: Spinal cord stimulation trail successful but denied permanent implant
Replies: 5
Views: 4157

Re: Spinal cord stimulation trail successful but denied permanent implant

Permanent placement of Spinal cord Stimulator was denied twice by my insurance and Medicare, after my doctor sent in documentation, that the trial had been successful. He used a stimulator that he knew was off label and no code for it in ICD Medicare code book for this orphan diagnosis. After this m...
by annettarn
Tue Mar 28, 2017 10:57 am
Forum: 2017 Omaha OT Meeting and Research - Dr Torres
Topic: Spinal cord stimulation trail successful but denied permanent implant
Replies: 5
Views: 4157

Spinal cord stimulation trail successful but denied permanent implant

:( [quote]I will be attending the conference in Omaha in September 2017. I had an implant in Nov 2016, and was told if it worked a permanent implant would be done in Dec. The neurological team agreed spinal cord stimulation would be a good option for me, as I am taking 6 mg of Clomazapam a day. Surg...
by annettarn
Thu Jan 19, 2017 12:49 pm
Forum: Research Papers
Topic: Long-term follow-up of chronic spinal cord stimulation for medically intractable orthostatic tremor
Replies: 7
Views: 1688

Re: Long-term follow-up of chronic spinal cord stimulation for medically intractable orthostatic tremor

I had spinal cord stimulation trial implanted for one week, it was very successful. Allowing me to go from 20 secs standing still to 5 mins, that is 15 times longer than before, and once I moved a dew steps, I had another 5 mins. Big improvement in my life. Permanent implant was scheduled to be foll...
by annettarn
Fri Jan 13, 2017 4:44 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Spinal stimulator trial successful
Replies: 7
Views: 1370

Re: Spinal stimulator trial successful

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 ab...
by annettarn
Sat Nov 26, 2016 10:08 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Spinal stimulator trial successful
Replies: 7
Views: 1370

Spinal stimulator trial successful

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 in...
by annettarn
Wed Dec 05, 2012 1:24 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Pod Cast from Canada's Currant Posted on Facebook
Replies: 0
Views: 487

Pod Cast from Canada's Currant Posted on Facebook

Hi OT friends, This morning I posted the link to the podcast about our Omaha Study experience and the information they included about how rare our disease is. I think if enough of us sign on to facebook and find each other there, our stories will go out to a wider web of people who have no idea what...
by annettarn
Thu Nov 01, 2012 11:16 am
Forum: 2012 OT Meeting & Research - Omaha, NE USA
Topic: Reports from the front lines at the Omaha OT Conference
Replies: 25
Views: 7648

Re: Reports from the front lines at the Omaha OT Conference

I was so glad to get tje invitation to come to this OT study. I was diagnosised in 2003, after going through all kinds of tests with one nuerologist,MRI, blood work, Spinal tap and EMG- while lying down. I was not happy with this doctor as he told me he would try to prove I wasn't crazy. My PCP help...

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