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Arachnoiditis-Anyone?

Started by chello on 11/11/2010 1:41am

Hello fellow travelers on our journey to pain free living :-)

I was unable to locate a group or discussion about this condition. From what I understand there
is not going to be a cure in what is left of my lifetime, so I seek wisdom from anyone else who has
it to deal with daily. I have chosen to not have the fusion in my neck and the Neuro has declined to
remove the misplaced screws in my Lumbar Spine. Now, with 4 new herniated disks, maxed out on
the time released Morphine and 10/325 Norco's, I am on a ( in my mind ) what seems to be a very
low dose of Meth and Percocet for breakthrough pain. I also suffer from relentless muscle spasms in
and around my shoulders and probably down to the middle of my T-Spine area. This gives me
near constant headaches, and some really memorable Migraines that I was certain would kill me.
I know people who have gotten spinal cord stimulators and sadly have had no relief with them. A pain
pump has been mentiooned to me as a possible therapy. Now to add more misery and suffering, I
found that I have kidney stones bi-lateraly. An attack is nearly as miserable as appenditis. It's gone
I got rid of it a few years ago. My question is about the Arachnoiditis. Is it going to get worse as time
passes, is the pump a good idea? I find it a very long wait for the taken by mouth meds to get to the
job of stopping the pain in my Lumbar region. Since I had been on such a massive dose of the Morphine for so long, I was lucky to get the Methadone from anyone. I'm grateful for the help it gives, but it's not enough for me to live in anyway one would consider normal.

I would love to hear from anyone with more experience about the pump and the Arachnoiditis, how
they tolerate it, and any suggestions that they have. I find Sage Wisdom to be invaluable in these
matters.

Many thanks to everyone. I pray for many hours of being pain free for each of you and one day an
instant cure for all of us. It took me over 30 years to get 20 Vicodin and some Dr to believe I was
really in pain.

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9 Responses

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Hi,

i think i have some idea of what you're going through. I stumbled on my "probable" diagnosis of arachnoiditis by reading an MRI report of mine from 2008. I've had a cervical discectomy etc. at c6-c7 in 2002, then herniated lumbar disc L3-L4 at work in 7/03....needless to say lived through a nightmare w/ my ex-employer (a hospital,mind you !!) which is still ongoing.....finally had discectomy, laminectomy, foraminectomy etc. in 8/04 when neurosurgeon removed what was left of the disc and 2 other fragments. Severe back & leg pain returned w/in a month and again I was made to suffer and drag myself to work as a psychiatric social worker on meds (Neurintin, Robaxin, Oxycontin, percocet ) that mildly took the edge off the pain, but harassed by employer because I wasn't PERKY enough (didn't "display a warm and caring attitude" toward clients) .....either sedated and falling asleep everywhere or crying in pain enough for my suicidal clients to ask me, on the verge of their admission to psych hospital, if I was OK....ironic,huh? Dx w/spondylolisthesis (vertebrae shifted position) on top of reherniated disc at L3-L4.

Finally had lumbar fusion at L3-L4 on January 9,2006. (I did want to have multiple opinions before I took the step so I got 4....the best was from a Dr. Rudolph Taddonio in Westchester Cty,NY & Greenwich CT. He was clear that I had a pre-existing mild scoliosis of 16 degrees above the site, along w/ degenerative disc disease,etc. in other areas which had rapidly deteriorated over 3-4 yrs. He actually recommended that ideally fusion from T-12 to S1 (the whole lumbar region) would stabilize the spine, or even 3 levels would be better, but would severly limit my mobility. At the time I was a 46 yr old single mother w/ a house and dogs and 2 not terribly helpful children. Felt one level would be the minimum needed for some relief. He said that the fusion would probably alleviate the leg pain, but might make back pain worse. He was right!!

I really suffered after that surgery. Neurosurgeon felt she needed a consult w/ the oncology dept. on the 3rd day post fusion because she had never written for such hhigh doses of meds. I ended up after a while post discussion between neurosurgeon and pain management doc on Oxycontin 80 mgs/day, Robaxin (Good muscle relaxer, not as sedating as others) 750 mg 3x/day, Neurontin 900 mgs, 3x day and the most helpful at the time was the Fentanyl patch 125 mcg q 72 hrs. (Sorry about the rambling,but serves for explanation) Eventually the oxy was switched to methadone 80 mgs a day because methadone is longer acting than oxycontin and reduces the pain roller coaster a bit.
I'm surprised that yr doc hasn't tried a transdermal pain patch, either fentanyl or something else. Despite the highly incendiary comments about fentanyl, it is not dangerous if prescribed and used correctly. This and other high dose opiates can only be given to people who have developed tolerance to opiates,which sounds like you have. (Yes it can cause respiratory distress, but almost always in those who use it incorrectly to get high, not those who have needed and become tolerant of increased doses of opiates.....the doses I was taking were enough to literally kill a horse, but did not affect me because I had developed a tolerance.

Now, in my situation where there is no other adult to drive, do errands, maintain the house, get kids where they needed to go, I needed to be more alert and functional than I was on those meds. They did really cut the pain down to a manageable 3-4, but I hated taking them because not only was I sedated (one or 2 sips of wine and I passed out at the dinner table), but the cognitive effects were just awful!! I became a blithering idiot, which doesn't help when u need to stand up to the manipulative arguments of 2 teens. I was able on my own to reduce the methadone to 40 mgs a day, but really hated the feeling, considering I'll need to be on something long term....

Long story short, went to anew pain managment/physical rehab MD this summer who REFUSED to treat me with the medication cocktail I was on. She insisted that I get off all the opiates I was on, since for one reason, they can have an almost rebound effect and CAUSE MORE PAIN. She insisted I switch to another opiate which works differently called SUBOXONE. She sent me to their website suboxone.com to find an MD who would do the switch. I did it through my old psychiatrist.
Yes, it entails some withdrawal discomfort for about 12 hours but he gave me some Klonipin (antianxiety) and Clonidine ( benign blood pressure drug used for CNS depressant effects/gets rid of physical withdrawal discomfort) The next Am at his office he started me on suboxone and gradually increased the dosage to where I was comfortable) Average dose is 16 mgs/day. I am on 20 mgs....I don't experience withdrawal symptoms on 16 mgs,but the burning sensation in my legs and back pain probably from arachnoiditis is too much at that dose & I need 20 mgs. for that.

I must say that I feel SOMUCH BETTER!! I am not sedated and I can think!! It is fabulous!! I know that the website says not to be used for pain management, bbut it does work well. Of course it's not the only medication I'm on (Yes, I've had the fantasy that there would be just one wonder drug to take care of allmy symptoms, but as we all know, that's not reality) The suboxone replaces the methadone, which I despised, and the fentanyl, but I'm still on Neurontin, now Baclefen as muscle relaxer, and I use 2 Alleve (Naprosyn sodium, naproxen) twice a day. My pain Md also gave me Ambien 10 mgs for sleep and it does help a little....Still don't sleep more than 3 to 4 hrs at a time, but feelmore rested when I get up) When I am tired, I no longer fall asleep standing up and fall down like a drug addict. I also am getting weekly trigger point injections...this is the first time they've worked, mostly because my MD has the physical therapists in the office mark the trigger sites....they know better than she does. I'm also doing some "aquatherapy", walking on an underwater treadmill twicw weekly for 30 minutes. Sometimes when I feel pretty good, I can even do our elliptical machine at home for 30 -45 mins.
I hope this helps. I know I'll never be "fine" or back to the way I was before I was injured; I've had to adjust my goal to OK. I know arachnoiditis progresses; yes it is a depressing, not pretty picture, but in order to function, I have to take it one day at a time and do what I can to keep as much mobility as I can (I used to run, workout at the gym, skate, play tennis, etc. so this has been real suffering for me.)

To keep myself sane, I can't keep focussing on what I've lost, but have to change perspective and feel proud of myself about what I still can do....I had absent reflexes in my knees & ankles for 5 yrs. and thanks to exercise, I have some reflex (although minimal) back in one leg. Yeah!

I used to run with my dogs (siberian huskies), but now, in an oddly ironic way, my youngest guy has aged (he's almost 11) and 3 weeks ago, herniated a disc in his back which is affecting his hind legs.
We're trying the conservative approach of meds and rest first, (as he has nothing else wrong w/ him)
and trying to get through this together. I do wish I had some version of a social life though..........

Anyway, try to feel better by investigating other meds to ask your MD about because once u can manage the pain, u will b able to do more....also, if u look at the big picture instead of the little victories, it will be too overwhelming to motivate u to do anything.....give urself a break too....yes u have a chronic condition that u have to manage for the rest of ur life, just like a lot of other people... but the key is u manage it, not the other way around.....

Hope this helps in some way, let me know.......

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I am wondering if Neurontin (Gabapentin) or, better still, Lyrica (not available as an generic in the US, apparently) have been attempted in your treatment. Some people despise Gabapentin because they find it makes them feel dizzy, confused, forgetful and/or irritable. Others have none of these symptoms and feel these medications are miraculous at relieving pain resulting from nerve damage. Both of these medication were originally developed for treating seizures, but are increasing being used "off label" by Pain Management Specialists. There is one thing that people seem to agree upon: they suffer a lot less pain from headaches and, in my partner's case, in the neck, arms and wrists (and intermittent severe pain in the lower jaw). His headaches, which were increasing in frequency and severity stopped entirely. He is also prescribed Percocet, Methocarbamol (an antispasmodic) and very recently, amitriptyline (the Tricyclic Antidepressants have also found "off label" use in pain management).

My partner has Degenerative Disc Disease and very severe problems in C3 - C6. The Neurologist did testing and CT Scans and spoke about "surgical fusion" and immediately said the risks often outweigh the benefits and the patient is left "worse off" than before. How refreshing to find a specialist who recommends *against* spinal surgery! He wants to do an epidural block on the lower back next week so more work can be concentrated on the cervical area (a course of physical therapy may be more effective if the lower back is stabilized and not painful -- no guarantees this will work, but it's worth the "shot"...yes, pun intended). Sometimes intelligent Polypharmacy and strategic use of shots and gentle physical therapy are the nearest one gets to being pain-free.

Any good Pain Management Specialist can quickly distinguish real pain and make a very educated guess about what is causing it. I'm sure you know by now it is nearly impossible to entirely eliminate all pain from all parts of the body. And even a basic set of x-rays will reveal problems. The Neurologist likely has a good reason not to want to go in after the misplaced screws -- and you are wise to avoid having the fusion done.

The prognosis is rarely positive when the spine is in poor condition: as a person gets older, puts more wear and tear on their body, no matter how careful they are it is impossible to defy gravity. And there is the issue of "the more you move, the more your hurt" versus "the less you move, the more you're likely to really hurt when you begin to move." Unless we are blessed with a miracle cure, the condition can be managed and worked with and you can find someone who will work with you to find the correct combination of medications to bring you as much comfort as possible.

While it may sound frustrating, I recommend you definitely consult with a Psychologist and possibly investigate meditation and breathing exercises and biofeedback so you are no so focused on the pain. And the medications you are taking are very powerful in alleviating one sort of pain and not another. I hope you are also working with a Pain Management Specialist. If you aren't, you need to find one. And do not expect to walk in and tell a Pain Management Specialist what pills to prescribe for you. Let him or her examine you and come up with a strategic plan and be willing to cooperate with the treatment. And yes, if you can find a natural, herbal method for alleviating pain which does not conflict with your prescribed medications, by all means avail yourself of this approach, as well. Just be sure that you're legal and honest with the medicos, as they will give random urine tests.

We all have a limited time in this world and my wish for you is that you find a quality of life that is not centered around pain or anxiety about pain. Please learn to love the moments when you feel less pain or no pain at all and focus on how good this feels, instead. Don't let the pain be "the boss of you." : )

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I also have this condition and was just put on Methadone. I was told that it is a good choice because it hits more than one pain receptor. The unique pain receptor that it affects is called NMDA (I think) and it reportedly prevents development of tolerance to opiates. So you don't need to raise your dose after you have reached your therapeutic dose. Also, it is supposed to be better at addressing "nerve pain" than other opiates. I was taking morphine. We shall see how I do.

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Thanks for responding to my latest problem with my spine. I will answer both of you in the same post so
that I don't get lost. I recently found a pain spcialist close to me and was taken off of my MS Contin 30mg 3x a day, + 10/325 Norco 8 per day. With that I was taking Robaxin, Klonopin, meds for the migraianes. It's a wonder I could move with that much opiate in my body. I had lost my other pain drs 3 in 4 years because they moved. I was put on 3 10mg Methadone, 3 5/325 Percocets, and 1,000 mg of
Robaxin 4 x's a day. I was in what they referred to as Drug Failure, so they switched it all and gave me
Clonodine to keep my heart from beating so fast in the switchover. In the past 6 months they have changed it to 50mg of Methadone a day and 3-7/325 Percocet for breakthrough and since the Robaxin
gives me headaches, I am giving Bextra a try. I had very scary reactions to both Neurontin and Lyrica.
My legs, feet, face and tongue got swollen and I was barely able to speak, I could feel my brain making
buzzing sounds. I have great difficulty with new meds, so I seldom take anything that is "new" for fear of
having a reaction. I had serious reactions to Vioxx, Celexa or Celebrex, whichever is not an antidepressant. I can't take antidepressants, they make me suicidal and depressed, like I am possessed. Since I live alone it's just to scary to take new meds. I also have 4 new herniated discs in
my T-Spine and C-Spine. Failed fusion in the Lumbar. FMS, sleep disorders. I'm one big mess. My
eye Dr said that when God made me, he broke the mold first. Some neuro wants to do surgery on my
neck because it's getting a little crowded in the canal and has a large ridge of boney overgrowth and
of course pinched nerve due to the herniated disc. Last surgery nearly killled me with complications,
not by pain, but PE, heart attack, massive blood loss during and after surgery. But, I had never been
diagnosed with Arachnoiditis before. I knew that my lumbar area felt very different from the disc problems. It's like living with a heating pad on HIGH and getting stuck with an ice pick at the same time
I hope that makes sense to you. It's so painful and if you are a woman you'll understand this one, I feel
like I'm having back labor after making a bed or sweeping a floor. I have asked for more of the Methadone, but they say I am maxed out on what they will RX for pain meds. Some days what I have is
fine, but more often than not, I need just a little bit more especially with my weird sleeping schedule. NO
they won't do it, but they will put me back on the opiates and keep changing me back and forth. I would
not get as much as I had, not even close to it. I don't know what to do. I loathe TENS and threw mine
against a wall in frustration. I don't see how anyone can stand those hateful things. I am not trying to
be unreasonable and I do understand that I will always be in some sort of pain, but at this time, I can't
even go to the dds for fear of getting a FMS flare from that chair, or extra spasms in my neck. I must
have the blocks put between my molars to keep my face from shaking in spasms during treatments. I
need a pain med that works really fast when it starts to hurt, it can take over an hour or two for my
breakthrough med to work at all. I have a friend with FM who takes 400 mg of methadone a day! She
had a knee replacement and the FM and gets enough methadone to supply me for a year in one day.
In your opinions knowing what I have wrong (forgot this one the screws are misplaced and are constantly sticking iinto soft tissue or rubbing on the back of my pelvic bones) am I taking too much of
the pain meds, or what is normal, or not enough. I understand you aren't MDs, but I have been in pain
so so long, well over 40+ years and I am honestly in pain that goes up to nearly 10 at least 4 times a
day. I don't drink alcohol, I don't even take tylenol, and can't take NSAIDS because they gave me an
ulcer years ago. One dr had me take so much that it damaged my hearing, and I go totally deaf on one
side every now and again. I really do live in misery, but try to keep on anyway I can to prevent from
doing any further harm to my body. I am just curious about the dose I am permitted now and what to do
when it really begins to hurt. I have to 5 10mg of methadone a day, I save the single dose to take just
as close to bedtime as possible. Then the rest I take 2 at a time and it is a long day to make that 40mg
last day and evening.
Thanks for your replies, I know it's not easy to get find time to answer questions for other people, but I
appreciate your generous help so much.

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Thanks everyone, I'm always so grateful for advise and to hear your stories. I recently had a nice long
talk with my pain specialist. What they want if for me to go off my meds for about a year. I seem to
have reached the tolerance level. I recall getting a discogram several years ago and the worst pain in
my neck was at C2-C3, and of course the sorry state of my lumbar region where the arachnoiditis lives.
It has been recommended to me also that I have a fusion now at C5-C6 because I am developing
lots of problems all of the way down to my toes because of the canal narrowing in the area, and an
osteophytic ridge that has formed. Here we have herniated disk which the neuro would like to do a
lamenocetmy ( can't spell) so sorry. My left side is feeling the effects of this and I have become half
as strong on the left side as the right. There are many more problems above this area, that he is
leaving alone for now. However, the Arachnoiditis still remains and always will. My meds are now
50 mg of methadone, 3 percocet 7/350 and Robaxin 1,000 mg a day. The lumbar region is unbearable, I can't do anything with my family, take vacations or go for long walks, ride my horse,
white water raft anymore, all of my favorite hobbies are gone. I have decided to have the surgery in my neck. I have been told that I will only spend 1 night in hospital and then go home and recover over the next couple of months. I have waited along time for some relief from the pain cause all over the trapezias area and hope this helps. However, they will not increase my pain meds because of the tolerance I have to the meds. I may have a total of an hour a day w/o pain. It takes
nearly 2 or more hours for the breakthrough meds to have any effect. I feel like I have tried all of the meds on the market. My MS Contin dose was 90mg a day and 50 mg of the Norco spread through
the day. Is my doseage reasonable considering the pain I am in. I won't be walking or moving if
the drop the dose down more and they want me to stop it for a year so my brain will " reset" to be
more receptive. Maybe so, but I can't make it without help. Then I find out about the arachnoiditis and wonder if it is truly progressive and I am going to be worse?? Such a though is really a huge
disappointment. I have lived most of my life in this pain after an accident at age 14 and I'm nearly
60 now. Please let me know if anybody has had success with something else. I asked for
the fentenal, but they say no it's too much of a change for abuse. It would have to be the kind on a stick because the patches will not stick to me. Is there any kind of class action suite about the
cause of the arachnoiditis? Nobody will give me a parking permit, I can't get over that. So, I hope that this surgery will help take care of some of the lumbar pain as well as what is getting my arms,
feet and neck enough. I have a friend with FM who takes 400 mg of methadone a day. I was told that dose is going to kill her heart one day. They are very positive that I am too tolerant for a raise
in meds and I truly want to see if my 50 mgs is at least reasonable. I have para-somnias and never
sleep more than a couple of hours at a time. BTW, I am also filled with kidney stones and attacks
from that as well. You all wrote me such great replies and I thank you so much. So if you could
possibly let me know if you think I am taking too much or too little I sure would like to hear from
you again. I am afraid of this surgery and what seems to be the best case senario for recovery.
Is it realistic to believe it will be such a great benefit to me? I also have been diagnosed with FMS years ago. And so you don't have to go back and read everything, the Cox-2's and Vioox made me
very ill will swelling in my mouth and all over my body. My last appointment they want me to see
a mental health professional, but personally I find them a bit uncomfortable for my personality.
Wishing you all better days to come, understanding from you family and friends.

Like/Dislike
0

Thanks everyone, I'm always so grateful for advise and to hear your stories. I recently had a nice long
talk with my pain specialist. What they want if for me to go off my meds for about a year. I seem to
have reached the tolerance level. I recall getting a discogram several years ago and the worst pain in
my neck was at C2-C3, and of course the sorry state of my lumbar region where the arachnoiditis lives.
It has been recommended to me also that I have a fusion now at C5-C6 because I am developing
lots of problems all of the way down to my toes because of the canal narrowing in the area, and an
osteophytic ridge that has formed. Here we have herniated disk which the neuro would like to do a
lamenocetmy ( can't spell) so sorry. My left side is feeling the effects of this and I have become half
as strong on the left side as the right. There are many more problems above this area, that he is
leaving alone for now. However, the Arachnoiditis still remains and always will. My meds are now
50 mg of methadone, 3 percocet 7/350 and Robaxin 1,000 mg a day. The lumbar region is unbearable, I can't do anything with my family, take vacations or go for long walks, ride my horse,
white water raft anymore, all of my favorite hobbies are gone. I have decided to have the surgery in my neck. I have been told that I will only spend 1 night in hospital and then go home and recover over the next couple of months. I have waited along time for some relief from the pain cause all over the trapezias area and hope this helps. However, they will not increase my pain meds because of the tolerance I have to the meds. I may have a total of an hour a day w/o pain. It takes
nearly 2 or more hours for the breakthrough meds to have any effect. I feel like I have tried all of the meds on the market. My MS Contin dose was 90mg a day and 50 mg of the Norco spread through
the day. Is my doseage reasonable considering the pain I am in. I won't be walking or moving if
the drop the dose down more and they want me to stop it for a year so my brain will " reset" to be
more receptive. Maybe so, but I can't make it without help. Then I find out about the arachnoiditis and wonder if it is truly progressive and I am going to be worse?? Such a though is really a huge
disappointment. I have lived most of my life in this pain after an accident at age 14 and I'm nearly
60 now. Please let me know if anybody has had success with something else. I asked for
the fentenal, but they say no it's too much of a change for abuse. It would have to be the kind on a stick because the patches will not stick to me. Is there any kind of class action suite about the
cause of the arachnoiditis? Nobody will give me a parking permit, I can't get over that. So, I hope that this surgery will help take care of some of the lumbar pain as well as what is getting my arms,
feet and neck enough. I have a friend with FM who takes 400 mg of methadone a day. I was told that dose is going to kill her heart one day. They are very positive that I am too tolerant for a raise
in meds and I truly want to see if my 50 mgs is at least reasonable. I have para-somnias and never
sleep more than a couple of hours at a time. BTW, I am also filled with kidney stones and attacks
from that as well. You all wrote me such great replies and I thank you so much. So if you could
possibly let me know if you think I am taking too much or too little I sure would like to hear from
you again. I am afraid of this surgery and what seems to be the best case senario for recovery.
Is it realistic to believe it will be such a great benefit to me? I also have been diagnosed with FMS years ago. And so you don't have to go back and read everything, the Cox-2's and Vioox made me
very ill will swelling in my mouth and all over my body. My last appointment they want me to see
a mental health professional, but personally I find them a bit uncomfortable for my personality.
Wishing you all better days to come, understanding from you family and friends.

I know that I initially said I was NOT going to have neck surgery, but it is out of my hope to stop
at least some of the constant pain that has caused me to change my mind, therefore I have
reconsidered and feel like I have to at least try and see if it helps.

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Hi Chello...so sorry to hear about your pain. I am positive that I too suffer from Arachnoiditis but my doctors don't want to give me that diagnosis. From what I have read doctors are afraid of that diagnosis because they think it will open the door for malpractice lawsuits. There is an informative website theaword.org and also on Facebook is "Life with Arachnoiditis". From my research Arachnoiditis is progressive. Please read anything you can on this horrible disease before you make your decision on the pain pump. God Bless.

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I have made patients pain free in one treatment with the Alpha Stim microcurrent electrotherapy device. i have people using this device across the country. click on the services and then alpha-stim at my website - drmcirvindotcom

this can be life changing.

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chello, not being funny, but do you play one? Once at our our university while I was working, some on was playing a bassoon T hey were behind a closed door but sounded like it was almost singing. Me I cant even carry a tune in a metal box. For info from many people on all these and more problems like yours and mine, go to: Yahoo groups my pain baclofen pump place. Hope you get this and it helps. Find me on facebook Clinton Williams

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