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Hi Jay
All I can say about the CT myelogram is - be careful. Be sure you don't have any allergies. I'd hate to see anyone else made worse by doctors with (mostly) good intentions.
The one thing which has helped me more than anything else is having regular chiropractic adjustments. It doesn't make the arachnoiditis go away, but it does get your spine working at its best. Before chiropractic I was too scared to try anything in case I hurt my back, because it could mean 6 weeks lying in bed waiting for the pain to go. Now I know that if I do jerk it or fall, etc I just trot off to my chiropractor and the pain will be gone in a week at most. The worst thing that happened was, I was standing on the pavement waitingto cross the road, when a car backed into me. It didn't actually hit me because I twisted out of the way, but I damaged my sacroiliac in the twisting. That hurt even more than the surgery I had in 1988!
But within three weeks I was back to my best.I just love chiropractic!I know it's not cheap, but I've lived on benefits mostly since my marriage broke up, and still managed to get treatment when I really need it.
The othe trick I use lots is distraction. I can do it with music, painting, embroidery - anything you can get absorbed in can take the pain away, even if only for a few hours. A few minutes is good, right? After you've practised for a few years, you ought to be able to go most of the day without really being aware of it, and it really does raise your pain threshold, so that the pain has to get progressively worse before you actually feel it. I'm not saying this is easy, because it's not - it's really hard. But when the alternative is to just feel the pain and be miserable, it's got to be worth a try, right?
One doctor wanted to implant a stimulator, this would be 15 years ago, but I
just had a feeling that I should stay away from more surgery. I'm not saying that's the right decision for everyone, because it's not. I took the painkillers and anti-inflammatory drugs, and now I've got Crohn's disease and impaired kidney function, but I had fun while I was taking the drugs! I even got to the stage where I could ride my daughter's horse, and I never thought that would happen.
Keep your chin up. What's coming next for you could just as well be good as bad.
Cheers
Catriona
jay <homesavers03@...> wrote:
jay <homesavers03@...> wrote:
What a lousy deal! Iodine is a killer!My doc wants me to have a ct myelogram. I can't have an MRi, as I have a spinal stimulator, which would be toasted by the radio waves. If you haven't had a stimulator, I can honestly say mine has helped somewhat. Ask your pain doc about it. They are covered by insurance,, and are not narcotic....I will say a prayer for you.Keep up your good attitude.Jay----- Original Message ----
From: Catriona Ferguson <catrionamferguson@yahoo.co. uk>
To: Arachnoiditis@yahoogroups. com
Sent: Wednesday, July 11, 2007 7:22:28 AM
Subject: Re: [Arachnoiditis] Is everyone healed?
Hi JayI agree - I only joined this group a few months ago and have had endless porn messages, which don't go well with me, as I've spent the last ten years nursing my daughter after she was abused by my ex-husband, her father.I have an urgent query if anyone is interested? I got arachnoiditis because in the 1970s I had two myelograms within three months, despite having a known iodine allergy. In the last three years I have developed Crohn's disease - inflammatory bowel disease. Imagine my horror when I discovered that I had mistakenly been given a contrast medium to drink before a CT scan, which contained iodine! This happened in the middle of February and despite horrendous quantities of destructive drugs, I'm still about as ill as I was then. I'd really like to know if this happened to anyone else? If so, what were the consequences, both short and long term?You can learn to live with this disease but it takes willpower! If I can helop at all, please get in touch.Catriona
homesavers03 <homesavers03@ yahoo.com> wrote:This was a once viable group. I haven't seen a post on here other than
links for porn or advertising.
My arc is getting worse, and I would like to hear from others who are
dealing with the pain, and trying to live life with this disease.
I haven't posted anything in quite some time.
For those of us who are truly fighting this ugly disease, let's see if
we can start it back up.
Jay in Tampa.
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