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Arachnoiditis

From: Jarhead_79 - on 10/04/2010 2:10pm

Hello Everyone:

I am new to the site. I had a 4 or 5 level fusion in September 2007. I had 9 herniated dics mostly in the lumbar spine area but there were 3 in my cervical spine (2 obliterated). I also had a synovial cyst, spondylosis, DDD and severe stenosis in my lumbar and cervical areas. I had one other problem but cannot recall the name of it. Trust me, as many of you know, it was plenty.

Not one neurosurgeon where I reside would even touch me for fear of paralysis from the surgery. I ended up at the Mayo Clinic in Scottsdale. They did a great job but I am still in chronic pain, have to recline mostly to ease the pain, walk with a cane and have to constantly change positions so the pain subsides for a bit.. They did not touch my cervical spine stating there was already too much to do at once. Three months later I began to get much worse. I could barely walk. A contrast/no contrqast MRI revealed I had Arachnoidis and my arthritis was very severe. I am seeking out people who are dealing with Arachnoidits and all the isssues we have to deal with I'd like to hear about treatments or medications that have helped a lot. My meds barely give me relief for very long and I am unable to work after a 25 year career as a Legal Investiogator working for law firms. I was with the last one 15 years before I resigned due to my inability to poerform my job duties as required.

Thanks for any input.

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on 10/20/2010 11:37pm

Hi Jarhead, I also have Arachnoiditis, DDD, Severe Scolosis etc... The pain is inhuman to say the least. 3 months after your surgery you felt worse because of scar tissue buildup. I joined an online support group called COFWA . Circle of Friends with Arachnoiditis. You need to make an appt. for the PAIN CLINIC. this is where to start. They are doctors and surgeons that treat the pain with medications, spinal cord stimulators etc... Myself, I am on Methadone 20 mg. 3x day and neuronton for the nerve pain. Yes it helps. The pain gets worse because of scar tissue building up on the nerves and everywhere you had surgery or an injection etc. This is what is causing some of the pain. Every time you had surgery or epidurls, or anything done to your spine where they had to make an insision, or anything is invasive and that causes more scar tissue buildup. There is a site that will explain every word on your MRI if you have a copy. It is www. adriaanliebenberg terminology.
Google that and you'll be amazed at being able to decifer your MRI. I found out a lot that my Drs. never even told me I had! The DDD is the main reason the surgions won't do anymore to your spine. But then again you don't want anymore done. It'll make your pain worse because of scar tissue buildup. I walk with a cane that I got online. I figured if I had to have one, may as well be a cool one, sciatic nerve pain in my right side, left leg is numb down through the foot and toes. Feels very cold and foot stings all the time. A huge muscle bulge on my left side of back from the scolosis pushing on the muscle which causes a deep achy pain, muscle spasims in my legs at night when I go to bed, sometimes in my ribcage, stiff neck, but I had a cervical fusion with bone grafted from my hip. I just found out I had scolosis. It's in the severe stage now. Drs. never told me I had it in the first place. I found out by accident I had Arachnoiditis. My pmr dr. sent me for the third epidural and I asked the Dr. doing it if he could shoot me up in another area sence the first two didn't work. He pulled up my MRI and I thought he was going to pass out. He told me he couldn't do the injection because I had Arach. Here I found out I had it for several years. the Dr. never shared that with me either. I was going to get a SCS put in, but with the scolosis and DDD I felt I wasn't a good candidate. Dr. TOLD ME TO HAVE A GOOD LIFE AND DISMISSED ME. nOW i STILL HAVE THE PMR dR. THAT i CAN'T SEEM TO GET RID OF BECAUSE dRS. DON'T WANT ANYTHING TO DO WITH PEOPLE LIKE US BECAUSE THEY KNOW THAT ALL THAT IS LEFT IS TO PRESCRIBE PAIN MEDS AND THEY DON'T WANT INVOLVED. Please join COFWA. There are a group of guys that you could relate to. (also women) Ask them anything you want and you will get quite a lot of responses from people that have been there, done that. You build up friendships with people just like us. Like I said, if your pain meds aren't working, you need to have Drs. review them and start you on something else to make your life bearable and have some meaning. Good luck Jarhead, hope to hear from you, Jan from Ohio.

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on 11/22/2010 10:45pm

check out the site below to learn about pharmacological interventions for chronic pain. It is a really great and informative collection of material. You will have to be your own advocate.

http://pain-topics.org/education_CME_locator/index2.php#NonopioidCP

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