Arachnoiditis..info. needed

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Does anyone here have this disorder? I have just learned about it and thedescription that I read seems to be identical to the symptoms that I have. I am wondering if a Neurologist would be the type of Dr. to Dx. it. Can a fusion help lessen the pain, if it is from Arachnoiditis?

Any info. would be greatly appreciated.

Lorie :angel:
 
I have it.

My PM doc dx'd me - however I believe so could any good Neurologist.

Arachnoiditis describes a pain disorder caused by the inflammation of the arachnoid, one of the merabranes that surround and protect the nerves of the spinal cord. The arachnoid can become inflamed because of an irritation from chemicals, infection from bacteria or viruses, as the result of direct injury to the spine, chronic compression of spinal nerves, or complications from spinal surgery or other invasive spinal procedures. Inflammation can sometimes lead to the formation of scar tissue and adhesions, which cause the spinal nerves to
 
I was diagnosed by my PM - and the condition confirmed by an MRI.

Diagnosis is generally made by taking a history rather than clinical examination, because this syndrome does not have any specific typical picture and many of the features fit the criteria for generic chronic pain syndrome and/or FBSS. {failed back surgery syndrome}

Arachnoiditis can be detected by the presence of a slimy substance viewable on MRI films - to me personally it looked "fatty like" there is also a type (which I believe to be more serious) called "Adhesive Arachnoiditis" -
a more severe condition.

I haven't a lot if info to offer you as I am still learning and researching this myself.
I would not wish this condition on my worst enemy and from what I gather there really is NO CURE - just treatment of the symptoms :(

I agree with Carol wholeheartedly > RESEARCH !!!!
Just use any search engine. There are MANY informative sites and articles that I have found and also many forums where you can tons of info as well as helpful insight on the diagostic tests available and treatments offered.

BionicWitch
 
Hi Lorie, you are not alone. I was diagnosed with arachnoiditis in May of 2008I seems sense then it's been going down for me. Of course, with arachnoiditis, it doesn't get better.

I would say (doctors), they wouldn't do the surgery, because all that would do is evidentially cause more scarring.

A fusion for arachnoidis..nope, not happening, I wouldn't think so anyway.

I'm sorry to be so down on it tonight Lorie, Lately due to the pain that arach. gives to me has got me wanting NOT to get out of bed, and can't WAIT to go to bed, to get some peach.

Just today my dr. put me on morphine sulfate ER, 3xdaily. He switched me from dilaudid 8mg 2xdaily and opana 40 mg 2xdaily. I told him I really dreaded getting up every morning and trying to last thru to night time to go to bed to get some rest.

So, I did take one this afternoon when I got home.(oh, he took me off the dialaudid too) and actually, I think it is going to help me.

Lorie, my arachnoiditis originally came from spinal surgery in 2001.
Write it you want, Donna
 
I just learned about the existance of arachnoiditis last week. Wow. I sure have the symptoms of tingling, jolts, severe body cramps, bladder spasms, and nurabness. I had back surgery two years ago and prior to that a mylegram that was aborted in the process as I fainted and my bp and pulse dropped really low. I also have multiple unusual brain calcifications and one of the possible causes listed was the cysticercosis.
I asked the othopedic dr, who was not the surgeon, if the arachnoiditis could be the cause and he said no. He never heard of bladder spasms or cramping being related. As I was burned in a MRI and can't have another one, the dr offered a catscan but I declined as I have had so many and have another brain scan in two months.
Thank you for all these posts regarding this. Very informative.
 
bionic,
You stole my thunder! LOL,
I have it and have for 15 years or more.I want to choke 70% of surgeons whom I have seen....but I have lost my strength.The God complex has got to stop..with alot of these neuro and ortho docs..I almost always leave my session with surgeons in a down mood.They took an oath..but what the heck...correct.PHYSICIAN DO NO HARM?
I feel so sorry for chronic pain patients who are not prepared for these
surgeons who lay in wait to humiliate them.
Twenty years ago,I was so large,strong and muscular that very few humans would look upon me with anything other than AWE.NOW,AS MANY OF YOU ARE FINDING OUT....I ALMOST APOLOGIZE FOR MY EXISTENCE in DOCTOR"S OFFICE ENVIRONMENTS. God Bless ALL of you,
cloudweller
 
Thanks alot. That is exactly what I needed to know. After my surgery, if things dont get better, I will ask for an MRI. My mind is nurab from all this research:) I have been researching CES and Arachnoiditis for the past several weeks. I am wiped out...but I will continue:)

Thanks again,
Lorie :angel:
 
Thank you for all the info. How do they Dx. this from not just being sciatica, failed fusion or pinched nerves. Is it something they find on films? I will be going in for my 3 level fusion and lamienctomy in 2 weeks. My back and legs are becoming almost unbearable with the constant pain in my back and legs. I have the burning legs and tingly feeling in my feet and shins. I also get the electrical shocks shooting down my bum and my legs. (and of course the constant pain in my L. back). So far, my Dr. says I have a pinched nerve and the leg pain is sciatica. Is there a difference between Siatica and Arachnoiditis?

Sorry this is so long,

Lorie :angel:
 
Usually surgery is not pursued if arachnoiditis is shown to be present. Surgery can make arachnoiditis worse so as my own neurologist told me surgery is out. Arachnoiditis can be shown on a mri.
 
Mine was diagnosed by having a myleogram followed by a ct scan. It is very important to do the ct scan because that is what shows the arachnoiditis. And then you will still have trouble getting THE DR to say that you have it. I also suffer every day. I hope this helps you
 
Hello Lorie and Carol and BWitch -
I'd like to jump in on this thread. I have had definite nerve/sciatic symptoms for more than 2 yrs now. I would say they are not nearly as severe as what you'all describe. But I have been wondering why my doc has never even mentioned neurontin or topamax or any other nerve medication to me - ever. As it turns out, my recent EMG/SSEP test was perfectly 'normal' or negative or whatever the right term would be to say no nerve damage. But this week I am having a terrible time with the old left bum pain and it occurs to me to ask: what do docs do to decide if neurontin and the other Rxs would help a patient? Do they just Rx it and see if it helps or do they have to have certain Diagnostics before Rxing it?
I have been having to put in long hours at work and so my nights are kind of short. I keep an eye on you all and read the board every day and my thoughts are often with you. I do hope this surgery is the 'charm' for you Lorie. Take good care - Suzy-Q
 
Just wondering if any of you have consulted a pain management specialist for the arachnoiditis? What about medications such as Lyrica, etc? I'd sure like to think that there is something out there that can bring a modicum of relief.

To the lady who is contemplating the pump using prialta (sp>).....if all other methoRAB have failed, I would be willing to try it. I do know that the med comes from a venom from a snail (I believe) and that it is quite potent. I'd do some ressearch on it and talk it over with the doctor as to how he would conduct a trial to find out if it would help you.

Best wishes to all of you who suffer from this life altering condition.

Carol
 
Lorie, there is a huge difference between the 2. Arachnoiditis can not be cured or fixed whereas sciatica can be. I think it would be a great benefit for you to do some reading and learn a bit about the disease. There is a vast amount of information on the web about arachnoiditis.

Carol
 
Hi Jai.I started with Adhesive Arachnoiditis in 86.I had a CAT scan because of migrains and the Neuro Specialist actually asked me if I'd had the Mylogram in the 70's because there was a "Substance " at the base of my skull!!However after me confirming my Mylogram he put my Migrains down to Depression I've found over the years that most AA patients have gone through all the usual,Orthos,Neuro's,Shrinks! etc.I've had Viral Meningitis twice,my Ulnar nerve 's moved,a DVT on my lungs and in 2000 I had a big stroke.Through all these years AA has never been mentioned(it has by me!) even though with numerous MRI's I've been told that there was a "substance" hindering the view and had to have a water based dye injected,then have the scan done again,this happened on 4 outof 6 MRI's I had.Then in 91 I was registered Disabled and told it was Fibromyalgia and "Oh Arachnoiditis"!.It still wasn't accepted by numerous GP's etc.I use a stick but now have a wheelchair and this last few weeks my left foot has dropped so the stick is being used less and less and the wheelchair looks like a permanant feature in my life now.Then last week I had an appointment with a Neurologist,following a CAT scan and MRI.I was in for just 5 minutes and he suddenly said "you do know that all your problems with Neuropathy etc is all to do with your ADHESIVE ARACHNOIDITIS "!! to say I was in shock is an understatement,it's taken 26 years to actually tell me face to face.I even heard him dictate the letter to my GP telling him the same.I know theres no treatment and things are unlikely to change,but it's going to be interesting on my next visit to my Doc when I say "so I was right all along!".All I can say about AA is take a day at a time! I know thats a cliche but no two days are the same with this hideous disease! Try and keep your sense of humour,I@m reached 60 and am determined to be here to see Grandchildren!Take care,Ginnie xx
 
Hi Suzy-for me, the Dr. perscribed the Neurontin when I started with the sciatica pain down my bum and legs. (It wasn't until my pain went past my knees and down to my feet). He said that is how you can tell if it is sciatica. I hope things are going well for you, esspecially now that you are working a lot. I have been wondering about you latly. It's nice to hear from you.

Hugs and prayers,
Lorie :angel:
 
Ginnie,
Hope this finRAB you! I was dx 4 years ago with AA and am still searching for some relief. I cannot tolerate narcotic pain meRAB, so a morphine pain pump was not an option. My PM dr. wants to try a non-narcotic pain med called prialt as a single shot trial, with an intrathecal pump implant if it helps me. Do you know anything about this medication? I am not sure about trying it.
God's grace be with you!
Thanks,
Chris
 
hi Bionicwitch, you must be a bionic woman to survive this insideous disease. i too have arachnoiditis and have survived 15 years of it so far but i dont know if i will ever be free of pain due to problems accessing appropriate meRAB even though i have been diagnosed several times now backed up with an mri showing my dura torn in 3 places, (from the 3 attempts the radiologist made to insert the needle) recorRAB of the blood patch i needed, x-rays showing white liquid around my brain (dye used in the c.t myleogram) and even a thermogram showing large hot areas all around my spine. have you required any evidence like this? and do you know of any other tests to diagnose this, since dr's seem to dismiss other dr's diagnosis in my experience and cannot comprehend how much pain i am in. how did you find a dr to believe you? if you dont mind me asking; did you get this from medical misadventure and have you ever successfully claimed for it?
regarRAB Jai
 
Hi Chris I haven't heard of quite a few Medications that are used in the States.Seeing the Neurologist was a good move as far as I was concerned,even though I've accepted nothing can be done about the actual Arachnoiditis!At the moment I'm on Nortryptoline,this is helping me get some sleep but not doing anything for the pain in my feet and legs,but I'm going to try a higher dose in a few weeks.All I really rely on now is trying to relax which isn't easy I know.A couple of frienRAB have started Tai Chi and say it's helping them.I hope you get some relief,I definately think being refered to a Neurologist would be a step in the right direction and certainly wouldn't do any harm.Good luck,although it's very hard try and be possitive and keep your sense of humour!!All the best,Ginnie x
 
I agree and I have been reading a lot about it, but everything I read says the same things. It tell the symptoms...(which are the same as the ones I have) and that it is a lifetime disorder. I've learned what exactly causes the pain but I can't find anything that says how it is diognosed or determined whether it is arachnoiditis or sciatica. But I will keep searching ;) Thanks for the insight and if you by chance know how it is determined which you have...I'd sure appreciate the info.

Thanks again,
Lorie :angel:
 
My cousin has this exact condition.. she was relegated to a wheel chair until she had an opiate pump implant. Now she leaRAB a functional life.

I talk with her alot because she is my only family meraber who can understand / empathize with my pain issues.

I'll see if I can get her to post some information for you.
 
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