Arachnoiditis

i have suffered with arachnoiditis (scar tissue forming in the spinal cord) for 18 months now,  i developed following 4 major spinal operations within 5 years in an effort to cure stenosis.  the operations have left me with arachnoiditis, which in turn has made me incontinent and barely able to move from the waste down.  All help from my physician is around pain management which is failing badly.  

i am at my wits end with the pain and being stuck in the house.

does anybody know of anything that could help?  

[squirtatious]

What a journey you've been on!!!! *hugs* what treatments are available to help u? There has to be something to help u out there!!! I will stay in touch and see how ur doing, ur in my thoughts hun!!

[stefanie781]

I feel for you.  My husband has been diagnosed with arachnoiditis for years now and ther is only 3% of the post surgical people who have this condition.  My question is to you that is there a support group out there somewhere that can help talk you through these chronic pains?  Everyone has a support group why can't we make our own online? Because it sounds like you need to talk to some one too!  Maybe even a research doctor can get some ideas because these types of people have run out of their minds with pain

[mummy3too]

I have it, too!!  Adhesive Arachnoiditis!! Not that it's an exciting condition, but I am just so happy to have found someone here who even knows what it is!! Actually, I just met one other person, too!  Yes, we SHOULD creat one... perhaps here? There are actually a handful of support groups online... but not all are set up for communication like this. A radiologist diagnosed mine in a MRI - I have had 2 surgeries and actually need 2 fusions but cannot risk making the Arachnoiditis worse. All you need is one more surgery, a fall, accident, etc.. one more thing to make it progress even faster. Yes, unfortunately it may lead to loss of use of limbs. It depends on how quickly it progresses. Of course the pain is enough that you may not even care. I, too suffer daily. Sharp electrical stabbing pain, like an ax on my nerves. My back feels like it is broken almost everyday. Burning, Stinging, imaginary bugs on my legs... and oh, don't forget that wierd feeling like someone just dripped water or fluid down your leg!

Wow - I am so glad you posted. I have felt very alone here (in diagnosis only)... but I have also found friends over in the pain management forum and the chronic pain couch - both are forums here on medhelp.

They may not understand arachnoiditis - but they understand chronic daily unrelenting pain.

Again, thanks for posting!!

[Shazzer52]

Hi there,
I have adhesive arachnoiditis. I was diagnosed with it 10 months ago by a neurosurgeon here in florida that saw it on the myleogram. I had a spinal fusion 4 years ago. At the time of the surgery my surgeon tore the thecal sac around the spinal cord and I had a lot and I mean a lot of spinal fluid and blood leakage from my spine. In time the nerves had scared so badly that at the point of the tear that is has caused the arachnoiditis.
I suffer in so much pain every single day. The heaviness and pain in my both legs is like they weigh 2 tons each. The throbbing in my legs and cramping. I recently the past few months have  not been able to empty my bladder fully, so I am now concerned that the arachnoiditis may have caused this also, has anyone else had this symptom?

Does anyone else struggle with pain medication from their pain doctor. I am constantly pushing my doctor to increase my dose. I hate taking pain meds but it is the only thing that helps me to somewhat function. Yet, I feel like I am treated like someone that is a drug addict, it is so unfair given the life I live with constant pain.

Well, I am glad to have found you guys and hopefully we can support each other through this terrible time. My neurosurgeon told me that unfortunately arachnoiditis does get worse with time, I just dont want to believe it. I live alone and it is hard not having a husband or partner to help me.

Take care everyone
Sharon

[Shazzer52]

Have you considered a spinal cord stimulator? I have had 2 put in. The first one by Medtronic did not work well at all. I had the second one put in this past March and this helps about 20% with my pain, this is by Boston Scientific. It may help you more, but I would definitely suggest staying away from Medtronic if you do get the stimulator put in. It has had a bad history with patients. I realized that it did help some from when I let the battery run down and out, and then my pain was excrutiating. So, it does help me a little which is better than none, alone with pain meds this is how I manage my pain.
I hope this helps.
Sharon

[micheledawnrn]

I myself have arachnoiditis and I am having a lot of issues with pain. I recently moved to Illinois from Kansas and my new doctor is not helping me at all. She changed my medication from one that helped fairly well to one that is not helping at all. I feel like I am treated like a noncompliant patient when I ask about changing or increasing the medication to get some kind of relief. I resent that she treats me this way and also treated as if I am ignorant about medications, their uses, effects and side-effects. I have been a RN for many years and spent all of my career learning about medications and what they do or don't do. I would love to have contact with anyone else who is willing to form some kind of support group. I feel so very alone in my battle. I wonder if my doctor even really knows what arachnoiditis is.  Has anyone ever encountered a Physician who told them that it is a myth that patients with back injuires of any kind should have physical restrictions? I have never had any other doctor tell me I should have no restrictions at all.

[brandt54]

I have been living with arachnoiditis for years and the Doctors don't know squat about it, so Sad1

[adventurer53]

I have also been diagnosed with arachnoiditis. It was only recently that the term was used by my Doctors. They used to say that I have a lot of scar tissue inside and outside of the spinal cord. Two surgeries inside the cord, several spinal fluid leaks - one from epidural injection, one when spinal cord stim was implanted, and one now from my most recent myelogram. I was born with a tethered spinal cord, and consider myself fortunate to have the health I have had. Most severe ones have been since 2003. It was great to find others who understand about the electrical pains, pounding low back pain, feeling of sitting on a broken tail bone, the bad numbness in the feet and legs, as well as sunburn like pain or the feeling that you stepped in something wet - I've checked my socks because of the wet feeling. I will say that I do get pain relief from my spinal cord stimulator (medtronics), gabapentin, celebrex, lortab, ice and heat. It helps if I keep as active as possible, focus on how I can help others, and swimming and water exercises are great. My faith in God, my family and my great friends have gotten me through so much - oh, and a sense of humor! Laugh every day if you can!

[missjunebug]

Hello!  I am arachnoiditis patient, I live in Kansas and yesterday I had a permanent spinal cord stimulater implanted.  Medtronic reps had a very hard time getting the signal to extend to the calf of my leg, so therefore today I'm still having issues in that area today.  

I would be very interested to know who performed your surgery/surgeries.  My neurosurgeon was Dr. John Dickerson with the Abay Neuroscience Center.  It took him a year (after Dr. John Parks, my pain management specialist, pointed out the arachnoiditis to me on my MRI) to diagnose that I was dealing with arachnoiditis.
  
So for a year, I tried everything, accupuncture, epidurals, neurontin, physical therapy, even hypnosis.  With only brief pain relief, I'm sure you know what I'm talking about.  So can you share with me how helpful the stimulator has been for you?

I presently take oxycodone (10 mg/325), 8 a day, neurontin (300 mg, 3 a day), Fentynal pain patch (25 mg), and a muscle relaxer, plus ice packs. I still have so much pain I cry everyday.  I'm hoping the stimulater will allow me to cut back on some of these meds and increase my stamina, muscle tone etc., and let me stand and walk without my walker.

I'm glad I found this forum to learn from and share with the others.  My local Primary Care Doctor has no idea about arachnoiditis.  Pain of this caliber is very lonely-no one understands it.

Thank you and have a good day,

Vicki Chinn

[troylee]

WOW!! It is a rare thing when I actually find someone else who was also born with a Tethered Cord. I was diagnosed in May of 2010 with Adhesive Arachnoiditis, from a Previous Lumbar Surgery back in 1996. It has taken this long for the Nerve roots, etc...all the Symptoms to actually appear. I also have about a 3" Fatty Tumor in same area of my spine. I also have Quada Equina Syndrom (syndrome), and now my Neorosurgeon seems to think that my Cord might have Re-Tethered!? I have seen 6 diff Neurosurgeons in last 2 yrs that All say same thing that I'm In-Operable!? I also had my Filum Terminale "snipped" during my 96 surgery because Dr found it after opening me up for surgery, and said it Shot Up like a Rubber band!! It had been attached my whole life(this in itself explained all of my lower Back Aches I had had my whole life). Now it's all these diff things combined. I was 47 when I became 100 percent Disabled with this in 2010. I was Full Time Police and Loved my Job. I have now basically been bedridden for the last 2 yrs and in what I call LALA Land on Morphine!! I'm currently weaning myself OFF of that aweful drug...for Me anyways. I'm sure it helps some. It has put me in the local E.R. 3 diff times and I've just had enuff. I had 4 Laminectomies in my Lumbar 1 thru 4 is my Main Issues...etc....I'm so glad to actually find people out there that might understand exactly what I'm dealing with and going thru...it does help a little. I feel like i'm rambling on so will stop here. I sincerely Wish You and all of us with this aweful Disease the Best!! T.W.