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jets54 09-06-2015 12:44 PM

New To Arachnoiditis -- May Have Leak
Hi, I recently developed Arachnoiditis this past winter. After having a problematic lumbar puncture at St. John Medical Center in Tulsa, a few weeks later I went through a blood patch in attempt to alleviate symptoms. It went from bad to worse from there.

It has been a living Hell for me, and now I lack a doctor to help me. To complicate matters, a few weeks ago I noticed at night a small amount of fluid dripping out of my right nostril. I have nearly a 20 year history of cerebrospinal fluid leaks ( CSF leaks ). Do anyone have an idea if such leaks can be repaired without exacerbating their Arachnoiditis condition? I also need to state I have three Arachnoid cysts, one of which may be effecting facial cranial nerves. Any advice is greatly appreciated.


Moldova 09-19-2015 07:13 PM

Re: New To Arachnoiditis--May Have Leak
For now you have to find a good Dr who will give you a good advice. Without a good specialist you can only guess, worry and still without a good results.
So do your homework, ask people, do search on Internet about years in practice, research, books, his main training, etc.until you like what you see and hear.
Then get ready for an app and ask questions.

I had leaks a few times too, had to spend time in bed all the time for 3-5 days. Leak gave me severe headache in other then laying down positions. You didnt mentioned any headache problem though...

I have at least 3 epidural injections every year, having ARC, n even big spinal surgery. Of course, surgery isn't something good for people with ARC, but when no other choices, do what you have to do.
I was told by a few Drs that epidural shots will not affect ARC and in many cases steroids may calm down inflammation and irritated nerves. This exactly how it works for my pain...

All the best!

jets54 09-20-2015 04:42 AM

Re: New To Arachnoiditis--May Have Leak
Hi Moldova,

Thank you for some very good advice! I am so sorry to hear you have Arachnoiditis! You are right--I can only guess in vain from where I stand. I am very new to all of this, but I have looked into some research by Dr. Antonio Aldrete, a reknown authority on Arachnoiditis. He did not appear to be a proponent of epidural injections of people with Arachnoiditis; but I did have intravenous injections of Methypredisolone (500 mgs per session) which I believed help a lot. I also took oral Methypredisolone for pain--I will see if my primary doc will prescribe steroids.

Yes, you [U]must[/U] do what you have to do to cope with the dreadful, terrible pain! A person really has to weigh the pros and cons. One thing about CSF leaks is the possibility of getting Meningitis. I do have headaches with the leak this time. I will keep searching for a specialist. I am quite limited by my income, it makes it hard too as I have a limited support system (no spouse, no children, fair weather friends). Accessibility is key for me--I really need a doc in Oklahoma, but I will research for the best option and the subject. Thank you for responding to me!

Take care now,:)

teteri66 09-21-2015 10:39 AM

Re: New To Arachnoiditis -- May Have Leak
I would just add to Moldova's comment "I was told by a few doctors that epidural shots will not affect arch..."

that lots of doctors also still deny the very existence of adhesive arachnoiditis. They will also say that AA is very rare which has been proven to be untrue.

I would just urge you to find the very best specialist that is available to you and then really interview him or her to be sure of the knowledge of and experience with AA.

jets54 09-22-2015 04:03 AM

Re: New To Arachnoiditis -- May Have Leak
Thank you so much for responding! The more I research it, the more I am confident that Arachnoiditis is increasing in numbers--a tremendous amount of people have it due to medical procedures and more so do not know they have it as there tends to be a lot of misclassification and denial as you pointed out. I was originally told by one neurosurgeon I had "inflammation". Got the report myself later on and it showed "clumped nerve roots" at L5-S1. Get your reports folks! I like your suggestion to interview the doctor. My primary never heard of Arachnoiditis, my endocrinologist never heard of it, the PA-C at the neurosurgeon's office said she never heard of it either... (collusion will come into play at times). A man-made disaster.

teteri66 09-22-2015 06:37 AM

Re: New To Arachnoiditis -- May Have Leak
I feel the need to correct my previous post. What I referred to as "AA,". Adhesive arachnoiditis, is the most severe form of arachnoiditis. I think when it says "nerve clumping" on a radiology report, it is usually not the severe form...not yet anyway.

Have you found the work of Dr. Charles V. Burton? He is one of the pioneers in the field. He is getting up in years and it never occurred to me he was still in practice. One Sunday (about six years ago) I sent a email to what I assumed was his office. Imagine my surprise when I got a reply from him that afternoon! I never did have to go see him as mine turned out not to be arachnoiditis.

jets54 09-22-2015 04:04 PM

Re: New To Arachnoiditis -- May Have Leak
:) I am so glad it did not turn out to be Arachnoiditis for you!! So far, I have yet to have an MRI with contrast to see the extent of damage; but I did read some of Dr. Charles Burton's site a few months ago.

I got a lot of agony going on: continuous burning on top of right foot, there are times my legs and feet cramp so bad I cannot walk, numbness in calves and toes; I cannot lay flat on my back because of pain, continuous twitches in thighs, calves, even ankles, searing burning pain in abdomen, and stabbing pains in legs and thighs. I had bilateral sciatica before the spinal tap and blood patch, but I can say the pain was nothing comparable to what I am going through now. My primary doctor was suppose to order an MRI with gadolinium--that was 3 weeks ago and so far no appt. She was reluctant to do it. I will go back to Dr. Burton's site to read more. Thank you for some very good advice!

gmak 09-22-2015 07:34 PM

Re: New To Arachnoiditis -- May Have Leak
Hi I'm sorry I'm so late jets 54. I have adhesive Arachnoiditis and I was told by Dr Burton's office he no longer treats arach patients but there are others like Aldrete and Tennant who know AA and I've read articles and papers they've written in my research. Also I read that Dr Burton said simple Arachnoiditis is just inflammation of the arachnoid layer of the meninges and occurs not that uncommonly but it's adhesive Arachnoiditis that causes the nerve clumping with scarring of the cauda equine spinal nerve roots and adhesion to the dura with severe relentless pain and neuropathy symptoms and a host of other symptoms. I was diagnosed after a lumbar MRI with contrast and a neurological exam by a spine only neurosurgeon who told me to have no more invasive spine procedures and sent me to pain management for the severe pain but you are right that it can be difficult finding a dr who knows AA and as you said many more are being diagnosed. As you research and interview physicians I hope that you find a dr who can diagnose and treat your pain.

teteri66 09-23-2015 06:30 AM

Re: New To Arachnoiditis -- May Have Leak
At least in my experience, the MRI didn't provide definitive diagnostic information as I received two opposing opinions from doctors...I definitely had AA and who told you that??? You most definitely do not have AA.

Guess who I chose to believe? My issues haven't gotten any worse but I plan on avoiding any further procedures.

jets54 09-23-2015 02:28 PM

Re: New To Arachnoiditis -- May Have Leak
Thank you gmak for your kind words. I hate you have AA, and I cannot imagine your pain. I can truly say, each day my pains are different as they are brutal. I hope you have a good caring neurosurgeon--sounds like he/she knows what to do and more important, what not to do. My MRI after intravenous steriods was done without contrast and according to my former neurosurgeon it showed no clumping compared to the previous--yet horrible painful symptoms still plague me. Not sure if I can trust that MRI report. I need one with contrast to get some better idea of whats happening. Oklahoma lacks experts in the area, but I think such a lack is a common problem. I hope in the future more neurosurgeons and orthopedic specialists will have guts to stand up to this problem and take preventive steps as well. Its iatrogenic nature makes it unpopular to deal with. What do you do for pain? I have read pain pumps can cause problems for people with AA. I know for now, I plan not to have procedures either as teteri66 stated in her post above. Not even for my CSF leak until I find someone who has some knowledge on Arachnoiditis. What a rotten dilemma.

gmak 10-08-2015 03:25 PM

Re: New To Arachnoiditis -- May Have Leak
Hi Jets, You are correct the lumbar MRI with contrast is the one that is always ordered for me so it's actually with and without contrast. After I saw the NS that finally told me my diagnosis he sent me to two others a traumatic spine injury neurosurgeon and a pain management neurosurgeon and it was pointed out to me on my old chart from original NS that the radiologist first mentioned Arachnoiditis on MRI done in 1988 and other than pain I had no other symptoms for years. However, I do have profound numbness now from my knees down. Had a sacral MRI recently and was diagnosed with dural Ectasia also and my pain dr didn't really know what it was or didn't express to me what it was but he was for the first time adamant about my adhesive arach diagnosis more than ever before. So, I'm trying to find out more about that and may go to the NS again. Also, you asked me how I manage the pain and I take a long acting narcotic, breakthrough med as needed and Lyrica to manage the neuropathy symptoms and it helps me so much to function and be able to withstand the tremendous pain. I hope you are doing some better now and have found a dr that knows something about Arachnoiditis. I have heard that some doctors are learning from their arach patients and more people are having some success finding a knowledgable dr and hope that you do too! Oh yes I almost forgot I think nerve clumping in and of itself on an MRI isn't telltale but nerve clumping with scarring is how it was explained to me by the NS. The nerve roots are scarred together with web like tendril adhesions and then once pulled to the dura more adhesions are laid down adhering and tethering the nerve roots to the dura.

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