Arachnoiditis: Trying to find a specialist

@ @christinasuit My paperwork ALL said arachnoiditis and the disability judge said he didn't believe that is what my problem was. Dr ForestTennant will help read MRI so you can show the findings to your GP which should helpifyou do have arach

I have been suffering from this problem for about 8 years now. My disability lawyer was fantastic. The judge we had was so understanding. But, to treat this condition is to say the least, hairpulling mad. But, I found an awesome pain management doctor that is god sent. I went through several before finding him. I wish you luck in finding relief and if you need to vent...please feel free to contact me via this website.

In 2016 one spine surgeon said I "probably" had arachnoiditis, but he sort of slid the comment in at the end of the office visit. I didn't know what questions to ask, but based on my previous appointments with him, he wouldn't have said very much, except to clarify that there was nothing he could do for me. Since then I have been told (after I asked if they could see it on the imaging) by three other neurosurgeons that I have arachnoiditis, and that I have cauda equina syndrome by one neurosurgeon, but they didn't mention this in the records, nor did the radiologist put it on the report. One radiologist said the diagnosis codes that the doctor put on the order would determine what information he would include in the impression. I took this to mean that unless the doctor gave the radiologist the O.K. nothing about certain things, such as iatrogenic conditions, would be on the report. The nurse practitioner ordered another sacral MRI, at my last pain management appointment, after we specifically discussed the fact that the previous imaging had severe artifacts from surgical hardware and a pain pump, and that no one had ever ordered imaging of the sacral nerve roots before. I explained that a neurosurgeon had told me, the previous week, that he could see arachnoiditis on the lumbar MRI that I took to the appointment. The nurse practitioner even asked the name of the doctor and typed it on his computer. I proceeded to tell him what the radiologist said and asked him to put arachnoiditis and cauda equina syndrome on the order. He indicated that he would do this, however, I was contacted by the person that was scheduling the MRI, who said he had put cauda equina syndrome, but not arachnoiditis, on the order. If I have the test and the radiologist doesn't see cauda equina syndrome, where will this leave me? I seriously doubt that he will say I have arachnoiditis, since none of the other ones have. Every radiologist in my area knows that surgery caused my problems. I could hear the nurses talking about this when I was lying in the MRI machine during the last test. I was approved for disability for a cervical spine problem, but I would like to find a pain management doctor that knows more about arachnoiditis. Did your doctor order MRI's for you, and if so did he put arachnoiditis on the order?

@jelizabeth

I'm going to have to disagree with the radiologist that told you the diagnostic codes the Dr. put on the order would determine what he included in the report. I understand that they are supposed to do as ordered but there is no reason they can't include all incidental findings. You are paying for these very expensive tests and you should have a say in how they are done. I found Nicolas Argy's point of view on the matter. https://www.nicolasargy.com/blog-2/index.php/2016/07/02/not-reporting-incidental-findings-in-radiology-reports
Not sure if I can post stuff on here so if it's not allowed just Google Nicolas Argy dot com. Check out his blog titled "Not Reporting Incidental Findings In Radiology Reports". His credentials are very impressive. He knows his stuff! You could argue that the radiologist refusing to include the incidental findings is a violation of the Standard of Care. You have the right to know about everything that shows up. Here is a clip from this discussion...

The current standard of care is to report all findings present, including those thought to be incidental and benign ( all corners of the film). By not reporting incidental findings, radiologists are breaching the standard of care. Not reporting them suggests to most lay people that the radiologist either missed the findings or was too busy to report them. While rare, benign appearing findings do sometimes turn out to be significant and even benign lesions have the potential to malignantly degenerate. Aren't these rare events, with potential catastrophic damages, the exact genesis of lawsuits.

Hi Margaret, I am an arachnoiditis patient, diagnosed with proper MRI´s in 2010. Started when surgeons used Pantopaque for diagnosis, at a time when MRI´s did not exist (1973). I needed surgery for laminectomy and fusion. I trust this diagnosis provided in 2010 because it came from Dr. Antonio Aldrete, who wrote several books and many articles about Arachnoiditis. He has since retired, however, and is no longer available for consult (I believe he has retired to Argentina). Have been fortunate to see Dr. Forest Tennant in 2017, but he closed his practice at the beginning of 2018. All I´ve ever wanted was to have is a way to "keep going," and have tried all sorts of land and water therapy, as well as various pain relief modalities, as instructed by Dr. Aldrete. Now am stuck on hydrocodone for the past several years...and feeling the effects. Now having trouble walking and driving, and can´t get to water therapy 20 miles from home. Feel as if I must start accepting an end. But not ready....until I manage to get to Mayo, Neurology in Jacksonville. Have appointment for mid August. This is a long reply, but one that may give some hope. I have lived with ARC and AA (adhesive arachnoiditis) since probably 1973, when it all began. Very important to get good diagnosis to be sure a person is dealing with this, and then try to read all you can about it. There is loads of information, especially the websites from Dr. Tennant. In my next note will give everyone those websites. Meantime, please do read up Practical Pain Management website, and search for "Arachnoiditis" once in. Search for Arachnoiditis everywhere you can, INCLUDING You-Tube. Knowledge is power. Especially at a time when most physicians know little about this condition listed in the National Organization of Rare Disorders (NORD). Self-education is the key now. Please forgive the length of this one!

I lost touch with members who have this disease.

Hi @kimspr, discussions about arachnoiditis can be found in the Spine Health group https://connect.mayoclinic.org/group/spine-health/

I moved your message to this existing discussion where you were connected with others already, like @jelizabeth, @qball2019 @carolinapearl53 @danispiderspine and more. You may also be interested in these discussions:
- Arachnoiditis https://connect.mayoclinic.org/discussion/arachnoiditis/
- Arachnoid Cyst https://connect.mayoclinic.org/discussion/arachnoid-cyst/

I'd also like to welcome new member @kacie. Kacie, what is your experience with arachnoiditis?

Hello Theodore, I also suggest contacting Forest Tennant, Calif. He started the Arachnoiditis Foundation. I hear you!! I understand!! I have Adhesive Arachnoiditis. I live in NJ. Wish I could help you. Only my experience, majority of P.M. have never heard of it or pretend don't know about it. I have a Pain Pump with 3 medications in it. It helps. Try and get all you information together so if you call Tennant and he asks you for it you will have it ready. My dr. put me on LDN not an opiate. LDN is hard to explain so if you look it up will explain in detail. Good luck to you and please let us know how you are doing.

Please pursue the Disability issue. I am almost sure I saw something online about it now being approved for Disability. May need an attorney, and I´ve talked to a couple already. I am too late myself since I stopped working several years ago because of the pain, etc. Don´t give up on Disability. Online research is your best tool.

You mention 2 great doctors, may I add, The Burton Report, There is another informative web site, Arachnoiditis a quiet web of suffering. find them also on Facebook. Within their pages we can offer information on Aracachnoiditis, Adhesive Arachnoiditis which is worse, do's and dont's when thinking about therapy, aqua therapy, exercise or miracle cures. PT, Aqua Therapy, Stretching, I did it all because dr's thought it would help but it caused more pain. They were not to familiar with AA.I trusted them. I have A.A./BJA: British Journal of Anesthesia, Chronic Adhesive Arachnoiditis. Very informative. Joan you are so right when you say research.