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Old 07-06-2006, 03:15 PM   #1
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Arachnoiditis?? Panicking a bit..help?

I heard someone mention this condition on this board and have done a bit of research. I have had 3 epidurals and most recently RFK. I am in more pain now than before. After the RFK my symptoms have increased and changed. My dr advised me to wait but it is now past the point at which she said that any inflamation from the procedure should have died down. I have been belwildered by my downward spiral, but have been hoping it is just temporary and that I still need to recover. However, after reading about this condition, there are several symptoms that sound very familiar. On the other hand, these can be symptoms of many things so I am trying not to overreact.

I would really appreciate hearing from anyone who knows more about this condition or suffers from it (if you, my heart goes out to you). What are the definitive tests for diagnosing this?

My new symptoms are - increased and new back pain - burning, esp lower back where RFK done. incr leg pain (sciatic), activity much more limited - now painful to walk at all or stand for more than few minutes. new areas of numbness esp feet, itching esp back, scalp, bladder pain, bladder infections, muscle cramps esp calves, feet, hot flashes/chills, low grade fever, headaches. Overall, my symptoms seem to be getting worse, not better, as time passes.

I'd really appreciate any thoughts.
Maine

Last edited by mainecoon66; 07-06-2006 at 03:33 PM.

 
Old 07-07-2006, 09:51 AM   #2
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Re: Arachnoiditis?? Panicking a bit..help?

Hi Maine, I'm sorry to hear of all the troubles you're having! I had my esi in my neck, so I can't relate to the increased lower back problems you are having, but I really did start having a lot more problems myself after having mine done. Most of the troubles from my neck has affected my left side, but after having the esi I have had an awful amount of pain on my right side as well. In fact my right hand has froze up twice now.

The first two weeks were plain awful--a lot of burning in my entire back, some fever and headaches. Headaches were something that I had been suffering from as a result of my injury, but had been under control for about two months prior to the esi with a med called topamax. Now, the headaches are back and I am still waiting for an answer from my pm about increasing my dosage to try to get them under control again. It's hard to describe all the pain I felt those two weeks--it was horrible. And, now I have pain I didn't have prior to the esi.

I did see my pm two weeks after the esi and he feels that I had a slight reaction to the steriod that is used in the injection. He based this on the way I have reacted to oral steriods in the past. Just slight nervousness, and a very fast heartbeat, which my primary said was normal. Who knows, but I will NEVER have another one again!!

For having a "reaction" it has sure messed things up!! It has been a month now and the aches are gone, but the new nerve pain is still there.
I sure hope things get better for you, let us know how you are doing.

 
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Old 07-07-2006, 12:35 PM   #3
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Re: Arachnoiditis?? Panicking a bit..help?

Hi Bluestream, I am sorry to hear that your procedure didn't help you as planned either! Did your doc give you any specifics on what he meant by a 'reaction' to the steroids? Did your dr talk about any followup treatment?

I've been doing some more reading on this and I'm definitely going to make an appt to see my doc asap. From what I've read this condition can worsen, and is better addressed asap after the procedure. I wish I had known about this risk before I had my esi's. I guess I didn't ask enough questions The doc just seemed so casual about this and was highly recommended. But when I think of how I was before the procedure and now, it makes me so upset. Before I could walk for an hour with some pain. Now I can only grimace and shuffle at best. I have been praying that this is temporary and it scares me to death that it may not be. I talked to my husband last nite - seems to be a bad sign that my symptoms are geetting worse not better.
Anyway, I'm trying NOT to panic, but I guess I am.
I hope you start feeling better soon! I hate headaches, so you have my sympathy...I hope you hear from your doc soon.
Best,
Maine

 
Old 07-07-2006, 07:17 PM   #4
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Re: Arachnoiditis?? Panicking a bit..help?

Hello, by reaction my pm meant "allergic". I knew that there were risks involved when I had this procedure done, but an allergic reaction was one that I honestly didn't even consider, nor did I recall reading about it when I was doing my research. It's just one of those things. I have read about people having the type of problems that you are describing. It seems as tho the esi's are much more common in the lower back area than the neck area.

When a person is suffering you will do just about anything to try to ease the pain, and these esi's are quite common--so I thought it was worth a try. My pm hasn't said a word about doing anything quickly to avoid any further damage!? In fact, his last words were: see you in five weeks. He did also say at that time he may do another series of MRI's and have me see a neurosurgeon. I really think I should have seen a neurosurgeon a long time ago. He did at that time try to put me on cymbalta, but I had a reaction to that also, and because I haven't heard from him I am going to assume it's best to quit taking it

If you can, try not to panic, you will only tense up your muscles and make things worse. I know it's much easier said than done!! The worst of my reactions did get better over time--but you might have something different going on. Do try to get in to your dr as soon as you can and get some answers from him--then you might be able to relax a little.
Good luck and let us know how you are doing!

 
Old 07-07-2006, 09:40 PM   #5
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Re: Arachnoiditis?? Panicking a bit..help?

Good advice Bluestream! I'm sorry to hear that Cymbalta didn't work for you. What was your experience? I tried it, and while I tolerated it ok, I didn't really notice any improvement in the pain. I have read good things about it though.
I haven't seen a neurosurgeon either and finally made an appt today.
I hope that they can figure out how best to help you next, and that you will feel better soon.
Maine

 
Old 07-08-2006, 07:12 AM   #6
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Re: Arachnoiditis?? Panicking a bit..help?

Hey Maine,
I can really relate to your fears. My first PM blackmailed me into getting ESI's by telling me she would not prescribe any pain meds for me unless I agreed to have them, even though I said I was terrified by the possibility of Arachnoiditis.She dismissed my fears as being completely unreasonable. After the third ESI my legs swelled up, and when I called the PM, she said it was just a reaction to the steroid and would go away. After several months the swelling had subsided a little, and the PM told me " Well, you signed a release saying you understood the risks"! I then moved on to a much better PM doctor, but the swelling is still there after 9 months.

 
Old 07-08-2006, 07:24 AM   #7
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Re: Arachnoiditis?? Panicking a bit..help?

Hi Maine, I'm so glad you made that appt! How long before you can get in? My next appt is on the 28th and I really hope I can get some answers then! I also have 3 herniated discs in my lower back--and based on the experience you had, I'm, in a way, glad we chose to work with my neck first. I already have enough troubles walking and sitting as it is without adding any further troubles!!

The cymbalta made me feel like I had weights on my legs and I couldn't get enough sleep. I was beyond tired in the three days I took it. This was the third a/d my doc has tried with me, and I've had some kind of a reaction to each one. I had really hoped that this one would work--I've heard that it can really help with the nerve pain. Are you taking anything at this time?

Badoldback: Any pm that forces you into any procedure is not one that I would stick with! No way. How awful for you!! I admit that mine more or less talked me into mine in a gentle way because I was scared, but never once said I had to have it done. I hope you start feeling better too!!

 
Old 07-09-2006, 08:30 AM   #8
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Re: Arachnoiditis?? Panicking a bit..help?

Hi Bluestream - I have not had great success with a/d. Actually I tolerated Cymbalta the best from a side effect perspective. The others I tried have made me nauseous and very anxious (not exactly what I was looking for!) and didn't seem to touch the pain. I also tried amytriptyline and it zonked me out and gave me a weird metallic taste in my mouth. I was a zombie on it. I do take Trazadone at nite for sleep - 50mg - and that seems to work weel so far. Have you tried that? I am also an 'allergic' person in that it seems if there's a side effect listed i have a good chance of getting it - i've noticed this seems to be common to quite a few cp people? - soooo...if i tolerated it, maybe you will too? tho i was taking it for sleep, not directly for pain. of course good sleep = less pain. do you sleep well? is that an insane question to ask a cp person??

 
Old 07-09-2006, 06:19 PM   #9
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Re: Arachnoiditis?? Panicking a bit..help?

Well, once my side effects got better with the topamax I started sleeping a lot better...until I had the esi, now I am not sleeping well at all. It's taking my body forever to relax when I first lay down and then any movement is waking me. The topamax does make me very sleepy, but the pain is just too much.

I haven't tried trazadone yet, but my primary prescribed me skelaxin, a muscle relaxer last time I saw her. I've been afraid to try it as I have such a horrible track record with new meds I really need to get over the fear of trying these new meds!!

I would give anything to sleep a full eight hours!! Right now, anything over 4-5 hours puts me in a lot of pain, it really bothers my hips and lower back to stay in bed much longer than that. Just doesn't seem fair does it?

 
Old 07-10-2006, 06:43 PM   #10
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Re: Arachnoiditis?? Panicking a bit..help?

I'm sorry to hear you are having such a hard time sleeping Bluestream! I tried Skelaxin and found it worked for the muscle spasms. Unfortunately it made my liver enzymes go up, but that may not be the case for you. I must say, I have tolerated the Trazadone very well, and it is the first thing in MONTHS that has allowed me to sleep through the nigth, and at the lowest dose,which means, YAY, lowest side effects, so it may be something you want to ask your dr about. I really hope you can find something that works for you. May blissful sleep be yours soon....
Best,
Vickie

 
Old 07-12-2006, 06:46 PM   #11
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Re: Arachnoiditis?? Panicking a bit..help?

Sherry,
Thanks so much for your reply. I am so sorry to hear that you suffer from this horrible condition.

I went to the links you suggested - they were very informative.

I also called my dr. who did the procedures. I had 2 ESI's done this year, a month apart, and then radio frequency in May. I had been told that the radio frequency was not going to include any steriods. However, when they called me back it turns out they did 6 injections of steriods during the rf procedure - 1 at each site of treatment! They used triamcinolone, which warns against intrathecal use, and lists arachnoiditis as a side effect if used that way. Also, on the last injection, she used the same needle multiple times in an attempt to find the right position.

Anyway, I am lucky in that my local university hospital does diagnose and treat arc and i have an appt next week with them (got lucky with a cancellation). I am in total denial...of course I also wonder, does knowing a name for my symptoms make a difference? I guess it does if it tells me what I can hope for in terms of prognosis and treatment. As you said, my main worry when signing the consent form was paralysis. I would have thought twice (and more!!) if I had known this could happen.

Have you found any treatments that work for you? I hope so.

Thanks again for replying.
Take care,
Vickie

 
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