... usual meds... lyrica, cymbalta, neurontin, older nanti-depressants, methadone, fentanyl patches, etc. I failed the spinal cord stimulator trial. I am now on the long acting Opana 100 mg 2x/day, Trileptal 600mg 2x/day and Zonegren 100mg at bedtime. I also take xanax 0.25mg 4x/day for anxiety. My thyroid was removed this year and I am on Synthyroid 200 M-F and 400 S&S. I take Vit. D 5000 units 2x/day. I also have Crohn’s disease and take medication for that as well. I take a multivitamin and calcium. I am planning to have a trial for the pain pump in March. My pain levels are between 6-8. I am unable to work and barely function at home any more. I have also exhausted naturopathic, chiropathic, dietary and other homeopathic remedies. Does anyone know of any medical therapeutic programs where one would go for a month or so to be evaluated and treated in a comprehensive and intensive manner to get some of my life back? Please help
Responses (5)
msfino18 Jan 2012
If you don't mind me asking, why did you fail the SNS trial? It didn't help at all?? My trial after trying to get one set up for the last eight months or more is scheduled for the middle of next month. I am so hoping for it to work. My pain levels in my lower back have gotten so bad that i can't barely walk anymore. In fact, I just got an (ugh) walker to help me go places. l I think that I will die if this doesn't work!
Ellen
Mary63200919 Jan 2012
If you are looking for a medical facility Mayo Clinic in Rochester, MN is probably your best bet. My husband was there in 1994, & believe me they turn you inside out. We were there for almost two weeks with all his conditions. You see a different doctor for each condition, & then they all concur. It's quite the experience. I am sure you would get the best of medical treatment there. There is also one in Phoenix, Az now too, & I think there may be one in Florida, but not sure. You can Google the name Mayo Clinic. My best wishes for your better health... Mary632009
19 Jan 2012
Mayo Clinic in Jacksonville, FL, though I don't think that it is as good as the one in Rochester. I was there for two days and the docs didn't actually talk together, they just emailed back to one doc. It was a waste of time money, and a HUGE disappointment for me. There are also Cleveland Clinics all over (besides Cleveland)... same idea, different cites :-) Mary is right, these places may be your best bet! I understand how frustrated you must be, I was there myself at one point in my life. The doc's decided to put me on prednisone. Yeah, it helped all the pain at that time (my sed rate was over 120), but the damage that it did was inexcusable. I was on 80mg daily for over 9 months in my early 40's. From that dosage came osteoporosis, cateracts, hearing loss, teeth problems, 100+ weight gain, fluid retention, and so many other problems I can't even remember them all.
nryng
19 Jan 2012
Thank you for comment. I've heard of both Mayo and Cleveland clinics. I've heard both positive and negative comments. I have a feeling that they'll say there's nothing we can do and send me back to the pain clinic. That's pretty much been the recommendations from everyone. I've been worked up pretty extensively. I've seen Dr. Latov in NYC @ Cornell Weill. Also, Dr. Menkes @ UCONN in Farmington, CT. They are both on the Board with the Neuropathy Association. I came across The Bridge Recovery Center in Utah and Amala Hospital and Research Centre in Kerala, India. I'm wondering if they would be able to help me. I'm looking to go somewhere to be helped. I thank all of you for your kind words.
LiverLips19 Jan 2012
HI nryng! Welcome to Drugs.com!
I realize that you stated you've already unsuccessfully tried naturopathic & homeopathic remedies. I live in Ontario & use an alternative treatment called Kohki. It's available by trained therapists in Toronto & also Beaverton.
While having a Kohki treatment done, my therapist had found some areas of concerns with my body. This happened before my doctors even caught it!
I do feel so much better after a treatment & highly recommend it.
nryng, I added you as a friend so that you can send me a private question if you need to find out more information.
I wish you all best! from Wendy :)
P.S. Kohki is not available presently in the U.S. It is available in Japan & Australia.
nryng
19 Jan 2012
Thank you. I'm going to google Kohki and see what that is. And thank you for your offer of help. It's nice to know there are others out there who are willing to help.
19 Jan 2012
nryng: I just thought of another possibility for you. I tried this 17 years ago, and things have changed so much since then, that it just might be your answer. I went to the Pain and Rehabilitation Center run from the University of Miami. There, you were admitted the first day, and all you did was go from one doctor specialty to another. At the end of the day, there was a meeting between you and all the doc's and their findings. IF they could help, they would admit you for at least four weeks inpatient to go through therapies all day long. Back then it was physical, occupational, massage, traction, personal trainer, and most important psychological, where they worked on biofeedback, hypnosis, etc. My main doctor was a psychiatrist, who oversaw and changed all my meds. (Back then they didn't believe in narcotics, ironically sending me home with narcotics). They certainly taught me many skills on how to deal with the pain, as they couldn't help get rid of the pain.
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I will so be hoping it will for you honey! Hugs. Ruth
Thank you Ruth, it has been a long time coming, and I PRAY that it works!!
Hi Ellen! I just wanted to let you know that you're in my thoughts & prayers as well, my friend. I wish you all the best!
from Wendy :)
Hi, It just didn't work for me. I had it on for 5 days and tried all sorts of settings. They had 2 lines in me to try to capture everything. My pain is in my feet, but also extends up to my thighs. I had the one from St. Jude's. That's just me. There was a former co-worker who had one for upper shoulder pain and hers worked really well. It changes her life. So it really is individual. You can't go by one person. That's why you have to have the trial and see if it'll work for you. That being said, I wanted so much for it to work. I kept imaging that maybe another day and it'll start working, but in the end, it didn't help. Now I'm looking into the pain pump.
@Wendy, thanks so much for asking. I can't believe how much I miss everyone!
@nryng, I'm so sorry that the SNS didn't work for you. I feel the same way, that I so want it to work. But to be honest, I am scared. I am afraid that there is just too much defuse pain for it to cover it all. It runs from T11-12, down through my sacrum, across both hips, and down both legs to my feet. Although they say that even 40-50% pain relief really makes a difference. Like I said, I REALLY am hoping that it works!