Those who suffer arachnoditis

[KonaKid]

How/who identify that you have ARC?

What has been done to help reduce your suffering?

Do you know of any new breakthroughs in medicine that offers hope to ARC suffers?

Any info appreciated.

Aloha....

[lfoster21]

Wow, am I glad to see this thread, since I have been searching for others going through what I am going through. Unfortunatly, my Pain Management Dr. is only treating the symptoms and has said it will be a life long effort.

I see a Urologist for bladder issues, a Neurologist, who dx. me, and my PM who is my main Dr. I just had a spinal stimulator implanted and so far it is doing some good. I had hoped it would take more of the pain away and that I could get off of my meds, but none the less, it does help some. I am also starting P/T next week, to see if I can stregnthen my right thigh and my left calf and foot. When I walk more than 15 mins. I strart to drag my feet, which leads to me falling easily.

I would love to hear from you, re. what you are going through and if you have found anything that gives you any relief. By the way, I see you are from Kona...I was born and raised in Kauai/Honolulu. Its amazing what tech. can do and how people can connect to others from accross the county/world.

Lorie

[Moldova]

Kona,
1. It was diagnosed by CT scan, Myelogram, MRI. At first Neurologist got interested in confirming this diagnoses based on symptoms only. He evaluated me for about 30 minutes; i had to move certain directions and tell him what exactly I feel. He put pressure on C-7 and told me to let him know what exactly I felt. Than he told me about ARC and that he suspects I got this condition but he needs to do couple of test to confirm it.

2. When it was confirmed, he explained to me how could I get it and what to espect in a future.
No cure, no treatments. Pain meds for the rest of my life. Unfortunatelly this condition does not stay put so to speak, it spreads further.
This is severe scaring of nerves and spinal cord. Pain is different than just pain from surgery or pain from inflammation. It feels like pain is all over your body, which is true. All nerves are hurting severely, affecting every part of the body. And of course my walking suffers, any body movement is a big job due to pain.
Even PT they do very careful (and not too much) due to nerve damage.

Unfortunatelly not cure so far and not much they offer for pain. I am on opiates not only due to ARC, i had 2 spinal fusions and more. PK really don't help me much with nerve pain. I also on Lurica, in a past was on Neurontin, Keppra. What helps other people doesn't work much on me. Many people like how Oxy works for them; I don't have much relieve being on this meds. I was 3 month on steroids, I had Gold Shots (I also have RA) and chimo therapy for pain, but when treatment stopped, I am back to square one again.

Worse is bladder and bowel problems. They tried to help me with meds for overactive bladder (even though I don't have one), but it did not work. For bowel nothing can be offered so far.

I have bad days, I have better days. So i try to enjoy when I can. I try not to think about Dr's say "ARC will never get better, it always gets worse". Whatever time I have on this earth, I try to leave it as fullest as I can. I have wonderful family and friends - what else can I ask for?

Please, feel free to ask any question you want; I am here to help you.

Best of luck to you!

[lfoster21]

Moldova-Thank you for your time that you put into your post. I have not spoken with anyone else who has been through this already and I am new to it. It was very informative and gave me a good insight to what I have suspected for the future etc.

When my bladder/bowel problems became an issue, after my 2nd failed fusion, my Urologist and Neurologist both said they thought it was Cauda Equinal syndrome. But the ENG only showed minor nerve problems. So, my Surgeon and PM Dr. said that it could not be Cauda Equina and could not explain the bladder/bowel dysfunction. (Even though Urologist ran all of his test and said they were definatly due to a nerve problem). My surgeon said that my symptoms should not get worse, because they doubted the CE. But yet, at that time, no one told me about ARC. Then I lost complete feeling in the genetal area and the bowels got even worse. With 2 Dr. saying CE and 2 saying not CE, I finally asked my PM Dr. about ARC. He said that the way we would know if after the various treatments that he was going to try, if they worked, it could not be ARC, because ARC is a permanent disorder with no treatment. If all treatments fail, it likly was ARC.

I have recently just had the spinal Stimulator placed in and it is not giving me relief and my pain is worse than before the stimulator was implanted. So, just this week, I was DX. with the ARC. Does it make sense that the pain I am in, after the surgery, is worse than pain prior to the surgery. This seems to have been the case with each of my past 3 surgeries. The Neurontin that was working for my sciatica is no longer working. I've been taking it for 3 years with 90% relief and now no relief. Would that have anything to do with the ARC?

I am sorry for going on for so long, but this is all new to me and I was so glad to read a post from someone with more experience than myself. You are right about friends and family being the main thing. I am so thankful for mine as well.

Thanks again for your time,
Lorie

[stymie82]

Hi Kona, I was diagnosed with AA in 10/07 by my neurosurgeon doing a second opinion. I had already figured out that I had AA from first hearing about the disease from Moldova being diagnosed with it. I started looking into it and found that all my symptoms and growing pain and disability could indeed be explained by AA.
I was a mystery case for more than 18 months-having more and more pain and growing neuropathic pain in my legs. Pushing myself to work a very physical job was doing me no good, either.
It's upsetting to learn that it is an incurable, painful disease, but at least I knew what I was dealing with. I'm on a cocktail of meds-lortab, neurontin, baclofen, tramadol, Celexa, and Androgel to replace depleted Testosterone. It's very important to get pain under control as my blood pressure was being driven way up by pain, even though I never had elevated levels before. Currently, BP is normal as the meds are doing their job.
You may want to do a search for Dr. Sarah Smith, as she has done a lot of research into AA and there is a fine support group for fellow-sufferers, though I can't link to it here.
My doc was willing to try a combo of Trental and Vitamin E for me, which I had found in a couple small trials online had been successful in some patients at dissolving epidural fibrosis. He thought perhaps it could work inside the dura, also. I'm willing to be a guinea pig. I'll let y'all know what happens with this. Only been on the regimen for 3 weeks.
First Rule of AA is to not have surgery to the area of the spine affected nor to allow any needle or any other invasive treatment to the spine.
May the Lord strengthen you in your day-to-day battle with this disease.