I suffer from Adhesive Arachnoiditis, Cauda Equina Syndrome, and have just been dx'd with Conn's Syndrome. I originally had two discs L-5 & S-1 'blow' all over my back. I live in a small town of 2,500 in the N.W.T. Canada, and had to be med-evacced to Edmonton. This was in Jan.1991 when Alberta was undergoing their major cutbacks and was left in this situation for two days. The largest piece of disc was lodge in the nerve root canal to the nerves to my bowel, bladder and right side. Two more surgeries ensued within 18 monts, and an Instrumentation and Fusion in 1997. I attended a Health/Rehab Clinic owned & run by Dr. E.Lyle Gross a year later and put on a pain program using Methadone for pain, and Topomax and Diazapam as I have terrible spasms that lock my spine, hips and I have a knee that is beyond replacement. I finally was able to move back home in 2003. My problem is for the first time I have a 'Pain Doctor' who is just a GP, and a new Pharmacist who are constantly saying I should be taken off of these meds, that they are going to kill me. I have an ECG, total blood & Urine every 3 months, and nothing there qualifies there statements. Dr. Gross defoted his professional life to pain, and espeically methadone. Any opinion? I'm also covered with Lipomas which seem to have tripled in size and number since the dx. of Conn's Syndrome, any connection? Thank You; Desiree XXXX XXX XXXX, N.W.T. Canada
Hello, welcome to Justanswer, I will try to assist you with your medical question, and any medical information you seekI am sorry to hear about all of these conditionsAre you still on methadone?What else have you tried for pain and does it work?
Nothing has worked as well as the methadone. For the first six years I took pain meds just for acute pain, and when the spasms were totally out of control. But I have a problem with meds 'quitting' on me. This isn't just pain meds.....I have the same problem with anti-biotics, but on the flip-side I have an incredible pain tolerance. 10 months ago I was on 170 mgs. per day, and have worked hard to reduced it to 40 mgs. With these people playing around with all of my damaged nerves, my pain level is rising and I don't want to increase as I am one of those that bloats from the heavy meds.
Okay, I understand , and what questions about this condition would you like me to answer?
Dr. E. Lyle Gross is a world renowned pain specialist....(his obssession with it cost him his first marriage) Due to a typo I was pushed to the front of a 2 year waiting list. He took me on as a patient when he didn't see individual patients anymore, but rather trained doctors about pain control. In fact, when he sold all of his clinics in Western Canada, he went to work at the Mayo Clinic training pain specialists. He had never had anyone with Arachnoiditis at his clinics not to mention Adhesive Arachnoiditis. Now the pain doctor I have now is a GP that the Gov't had certified as they 'screwed up' by saying they could look after me if I returned home when I ended up arranging for our last permanent doctor in our town to have a temporary certificate from Alberta. So they are saying that new info says that my meds are a deadly combination leading to sure death, but haven't showed me anything to back it up. Europe, New Zealand and Australia are far ahead of us on Arachnoiditis knowledge, and my support group is saying this is news to them, and that includes Dr. Sarah who has the disease and is probably the best known expert in the disease. So m y question is, are you aware of some great warning regarding methadone, where several articles I was shown to convince me to go on a pain program period...causes less damage to other organs than any other of the barbituate pain meds. And at a huge symposium in Calgary in I think 2002 they concluded that Valium is the best muscle nerve/muscle relaxant, but doctor reluctant to prescribe it due to the reputation it earned in the 60's & 70's. I'm just seeking another opinion. Thanx.....Desiree
Methadone is a highly addictive opiate, and while it is effective for pain control it is so addictive that in general it is not something prescribed for pain often, in fact more than 95% of doctor will never prescribe it for pain, and most doctors that prescribe it do so for heroine addiction, not pain. In general, patients on long term methadone should try to be weaned off. I understand that your pain may in fact require this treatment, but unfortunately the reality is it will always be an uphill battle to have it prescribed and have a doctor want to keep you on it for the reasons above. I wish I had better news but this is the reality, and honestly, most doctors will run away from the idea of having to prescribe methadone as well. Drugs of abuse and that can cause dependency are always a tricky subject with doctor because they can lead to problems with the prescribing doctor, so we are always cautious with this. This includes valium, and other benzodiazapines, and narcotic pain medication, and methadone is actually a step above all of these. Another problem with these drugs besides dependency is often more and more of each drug is required to maintain the same pain control over time as the body gets used to the drug, another reason we try to wean patients off of themAs to the last part of your question, the lipomas growing are not likely related to conns syndrome, this is likely coincidental
So in general it is always best to find an alternative pain medication that is not addicting if it is possible to control your pain with one of these. Pain specialist have a variety of medication they can try to gradually wean patients off of narcotic analgesics, and this solution should be sought if possible. If it does not work, that is a different story, but it should be attempted. I wish I could tell you what you want to hear but this is the reality