Sunday, July 26, 2009

Sore Back? This will scare you!!

Hi there! I've been busy lately. My poor little blog has suffered terribly and I am so sorry to have neglected it for so long.

I made the mistake of volunteering my skills (or lack thereof) to a web site used by the group dedicated to Adhesive Arachnoiditis - which is what Dub suffers from. This back condition is almost always caused by an invasive procedure by doctors. I guess the easiest way to describe it is to say that when the outer covering of the spine is damaged, this produces scar tissue. In some cases that scar tissue becomes very sticky and huge, it invades the spinal column and causes nerve "clumping".

Once the scar tissue starts growing and sticking to the nerves, the patient has tremendous, unending pain. It goes all day and all night. You have bad days and then you have worse days. The nerve pain is accompanied by a burning sensation in your feet - or for some people it feels like they are walking on broken glass. Very frequently one or both legs develop numbness. Sometimes just the thigh, sometimes the entire leg.

There are a lot of other problems associated with Adhesive Arachnoiditis. We have about 2,500 that belong to the on-line group. It seems like every one of them has different problems. Some can function pretty well, like Dub. Some are bed-ridden. Some are in wheel chairs.

Diagnosis is tough. It usually takes an MRI with contrast dye and an expert radiologist to spot it. Most doctors will first tell you that it's all in your head. Your surgery was a success and everything is fine. Your x-ray looks great. Once you have that "AA" diagnosis, Social Security Disability is pretty easy to get. It's one of the major disabilities on their "list".

For pain relief I've heard of everything from acupuncture to implanted morphine pumps and everything in between. I know of people who do well on very mild prescription pain killers and there are a lot who never get any relief even from their morphine pumps. Dub is one of the lucky ones who get pretty good relief on a minimum of prescriptions.

This can't be operated on. If you have surgery and they remove the scar tissue, it grows back - bigger and badder! There is no cure. There is no fix. We have a young man in our on-line group who is 21 years old. His mother joined when he was only 7! We've all kind of 'watched' Little Andrew grow up with this affliction. For almost 14 years his mom has been looking for a way to fix it!

We actually have two sites. One for information - where we try to keep up with all the latest research. The other is just about all posting back and forth about what works for each . . . and what doesn't.

Ladies - - this is for YOU! Birthing epidurals are a major cause of this problem among women. If that needle is off just a tiny fraction, you, too could end up with this! Discuss it with your doctor before having that epidural.

Dub and I had never heard of this until a year after his one and only back surgery. We got out all those release/consent papers that were signed and looked them over very carefully. Yes, it's in there! We are told by the "experts" that there's only about a 5% chance of having this happen.

So, please be aware. If you are having any procedures done that involve your neck, back, spine or anything close to any of those - ask your doctor about Adhesive Arachnoiditis. It will at least put him/her on notice that you know it exists. An old British study showed the 87% of cases were caused by physician errors!

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And for more of a downer . . . Stellan is back in the hospital. According to the last tweet from McKMama he is not responding well at all. The SVT is not going away and he is in rough shape. . . . GET THOSE PRAYERS GOING ! !

1 comment:

  1. glad Dub is doing ok and my prayers go out to Stellan as always

    ReplyDelete

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