Anyone with Arachnoiditis in lower back?

[DeniseMarie]

I am a 58 year old woman with fibromyalgia and degenrative disc disease of the lower lumbar region.  I had an MRI done 2 years ago and it indicated that there was buldging of the discs at L5-S-1 and also intrathecal nerve root clumping suggesting a "possible" prior episode of Arachnoiditis.  I've seen a Neurologist who did not confirm a diagnosis.  I continue to have back pain everyday, and most times it is bareable.  But, from time to time I end up in the ER with unrelenting back pain that does not respond to pain meds or muscle relaxers.  When I have this pain, I literally cannot move and can barely walk, let alone take in a breath.  ER usually gives me a shot of morphine and some anti-inflammatories and send me on my way with a diagnosis of severe back pain.  I know that there is no cure for arachnoiditis, but I'd really like to know if this is what is causing my problem.  Anyone out there know if just the MRI confirms a diagnosis or are there other tests?  What type of doctor can confirm it?

[cat2u92021]

Did you start the email sight to keep in touch with other arachnoids (that's what a few of us call ourselves)?  I would really like to join?

Thanks

Cat2u92021

[liloleareynoso]

hi , i am from México and yesterday i was diagnosed for Arachnoiditis, the doctor wasn´t sure because in the magnetic resonance studies, didn´t whor exactly anything very clear.. so im worry .. im 25 years and i have been having pain in the hole body more in the lower and upper body, arms, legs,Tingling, numbness, or weakness in the legs.But i dont know why i feel i have to go again to the dr ( i dont know how to say it in english) that knows about bones.. in spanish is Ortopedista....i have been reading about this desease in the web, and i haven´t suffer a trauma i dont remember, the doctor told me that it might be a result of a fall when i was a  kid or something like that... do you thinks so??... what can i do to be sure look for second opinion...go to another doctor specialized in the spine not in the nerves neuro surgean? is the word? i dont know what to do and the pain is not nice... not to live with it every day! help me! please!

Liliana Olea

[Vales]

Hello all, I found this page looking for information on how to find a good Neurologist. I am 46 and 16 months ago had a fusion L4, L5 I still have severe issues with L5, S1 and also Stenosis above my fusion. I went through all the physical therapy and walked everyday, thinking all the while that this is what needed to happen to keep me well, I did great after surgery and my family and I were very happy to be through it.

I realized I would never be the same but before surgery I could not even make it down the isle at the grocery store. Now I was feeling better no more back pain the pain I suffered for so many years was gone, I could walk again as well. Three or four months ago I noticed my legs had really stayed numb, especially the left one. They were numb to the touch but I could feel pain. The sparks started in the left leg and it progressed rapidly, the longer I stood or the more I walked the more intense the sparks. I learned to stand like a flamingo giving relief for a moment until I set my leg to the ground again.

I now feel the full intense pain of damaged Nerves I guess. The lightening bolts and sparks and intense pain is all I can describe, I walk as far as I can then I am done. It amazes me how much it hurts to touch my skin; I have learned that is the wow you have done to much today pain, which stays for days afterwards. I took Nurotin for awhile and developed tremendous joint pain in my hands and feet, switched me to Lyrica , but the joint pain remains. I have not changed as I am awaiting an appointment with a neurologist. My Spine surgeon said it is where I needed to be. I also take Vicodan for pain only 3 a day as I hate the pan meds.

I truly hope that a neurologist can help me or should I see a neurosurgeon? I guess I’m looking for some relief as my life needs to keep moving, my husband is a Veteran 100% disabled from a bad Parachute jump. So it is me that my family needs to keep the wagons circled.

Any advise would be wonderful as I see a few of you have kept the brightest of thoughts, myself I just broke down and cried, I hope to be in your bright spot as well soon enough.

Thanks for reading

Valerie

[Kimberly64]

I would love to start a group email. I think one of my most emotional things I go through is no one can see anything is wrong. Not that I would want that, but I can tell some think I am crazy when my steps are about just inches apart. It helps me to talk to others who understand. I am glad to hear you have found something to relieve your pain. I am still not sure I could go through being cut on again. I search the internet hours weekly, for something new. I have come across some interesting things. One of the therapies I have found is called Prolotherapy. It is injections to help speed up the healing of inflamation. It claims to rid the pain, completely. I am looking into it more. This is the only thing I have EVER come across that gives hope.

Today, was not a good day. I did not do very much. I fell, about 2-3 weeks ago. I have a new hurt going on and probably need to go to the doctor. I have waited thinking I was sore from the fall.

I don't know if I am strong or just hard headed. I do know if I had done what the doctors said, I would be in bed all the time. At the time my oldest was still home. I am a single mom, of three. We live on ten acres with horses, dogs, cats and, until a year ago, a herd of bout 25 goats. I am lucky my children are very compassionate people and help me very much. I, also, have my very best friend who has stuck by me through it all. Poor 'ol thing has had to catch the hell I probably would have put a husband through!!! Ha!Ha! But, he still comes around, so he must like it. heehee He has been a life saver.

I do my best to get up and move, even if it is a small walk, around the yard. I hate the pain and hate the things it has taken away, from me and my family. However, I can say I love being home with  and for the kids. When my daddy was sick I was with him constantly and at his bed side when he died. I have found good in being able to stay home compared to having to work all the time. My two girls and I lay around and talk all the time. I don't think I would have that time if I worked.

My life has changed and I have to accept it. But, I do what I can, when I can, even knowing I will pay dearly for it. I will give you a hello on your email.

Have a good one!!
Kimberly

[mikkelev]

     Hi Kimberly,
     During my second rotation in Iraq, I injurred my back doing something that I did most everyday of my military carreer.  I was simply moving aircraft parts to get the aircraft ready for regular maintenance.  I was medivacd out of theater after having bowel and bladder control problems, and was eventually shipped back to my home station at Ft. Hood, Texas.  Six months later, I had a fusion of L2/L3 and L5/S1.
     Last year, at the age of 33, I was diagnosed with adhesive arachnoiditis at L1/L2/L3.  This was after my failed back surgery from October 2004.  By June 2006, I had the revision of my L2/L3 fuse plus L1/L2 had to be fused.  After my diagnosis, I was probably like everyone else..... that blank stare on my face.
     My new doctor, the one that did my 2006 surgery, was stationed in Iraq with a pain management doctor in Iraq, and had become aware of a spinal chord stimulator and thought that I would be a candidate.  I saw the pain doctor down at Brooke Army Medical Center where I went through the trial.  
     Prior to this trial, I was taking Morphene, Oxycontin, Valium, Percocet, Flexeril, and a few others that I couldn't even pronounce.  I was taking all of that everyday, all the time.  I hated that drug induced stupor that I was in.  During the trial, I was able to go several days without any drugs at all.  I got my permanent Medtronic stimulator in August 2006.  This was the non-rechargable 5 year battery.  Six months later, I had to get a new battery and went with the rechargable.  That's not to say the batteries don't last for 5 years, it's just how complex my program had to be.  The rechargable units can go as long as 14 days before recharge, and it's something that you can do as you go about your "normal" routine.  I can only go about every other day before I have to recharge though.
     Even with the limitations the electrical equipment has put on me, I can walk on my own power.  I still have my walker just in case the battery fails.  Sometimes I can go several days without any pain meds, but other times, I have to take it throughout the day.  I only need the Valium, Flexeril, and Percocet!!  Those of you out there that might be a candidate for the electrical implant, don't completely dismiss it.  I can't and won't say it is for everybody, but for me.... I have my mind back, and I can drive again (for now).
     Like everyone else out there, I am scared of the prognosis of this disease.  All those things that I took for granted prior to this whole thing....  I never realized just how many things I did take for granted.  Simple things like putting my shoes on.  Bless her heart, my wife still puts my boots on for me when I have to go in to work.... yes, I am still in the Army, but will soon be medically outed.  Scared doesn't really define what my wife and I feel about this disease.  We can't get a lot of our questions answered simply because there are no answers.  I try to hold my head up high, but honestly, I'm not as strong as you are Kimberly.  Three years ago this May is when my wife and I had our lives turned upside down.
     We don't know how long this implant will keep the pain at bay, but for now.....  The best thing throughout this whole posting from everyone is "One day at a time".  We are prepaired for the worst, but pray for the best.  Bless all of you out there and know that even though we don't see each other face to face, we are stronger now with each other than we were before.  If anyone wants to start a group e-mail, you can include me in there.  Feel free to e-mail me at ***@****.

[Kimberly64]

Good Morning to all,

I just wanted to confirm Sherri's information on SS Disability. Mine took a little longer, but, also, very lucky not to involve an attorney. However, if you should need legal help and can't afford it, I would think, all states have legal aide, Louisiana does. There were times I had questions and got all the answers I needed, without charge. I am a single mom, of three, and at the time had no money coming in. Thank God for good parents!!

The most important thing is to answer every question, send all of your medical records and return ASAP. It is easier to get copies of your records, from doctors and hospitals, than having to wait for SS to send for them. Make sure you make copies of everything and don't get frustrated when or if you recieve another book, of questions, that have about the same questions  

I had to do an interview in front of several people. It was a judge, his secretary, someone who kept all the notes, 2?? doctors, career person, don't remember exactly, but all were very nice and made me feel very comfortable.

I think the delay, with most people, is not completeing applications properly, not sending in second or third set of paperwork, thinking they have already answered the same questions, or the wait on medical records, which shouldn't take more than a couple of days, if you do it yourself. A friend drove me three hours away to get my copies, from the hospital, which saved time, in the long run.

I would like to know what some of ya'll take for pain and help  for sleeping. DeniseMarie I sent you a post on front page. Well, I am looking out the window and it is a beautiful day, I think I might try some work in my flower
bed. My grandmother believes everyone should get a couple of healthy sunshine a day. And, she is 87, has never been sick and still kicking. And, her moma lived to be 98, so I think there might be something to it.

Ya'll have great day,
Kimberly