I'm happy I noticed the notification I received of your pm! I don't check my emails very much these days and I haven't been spending very much time on Mayo Clinic Collect. I probably should though.

I am so sorry to hear that you have arachdnoiditis, Tarlov cysts, and had to have surgery on your L5... and of course the cancer surgery. I will send my prayers for you! Like you, I have done a ton of reading on Dr. Tennant's websites. I think I may have read every page on both sites! Have you checked out his http://www.intractablepainsyndrome.com as well? I did send some questions to his team and also included my symptoms and Dr. Tennant responded to me. He thinks I may also have EDS and that I have developed intractable pain syndrome. He said most all patients that have Tarlov cysts also have EDS (the cysts being secondary to the EDS). I have taken the surveys and info. in to my doctors. So far my primary care is in support of the arachnoiditis, my physical therapist that I've been with since 2005 has mentioned that she would be shocked if I didn't have it many times over the years, my pain management doctor seems to be on board as well although she hasn't said much about it. The pain management doctor has other patients that have gone to Dr. Feigenbaum for the surgery and she also has other patients that have also brought Dr. Tennant's info. to her. The doctor who has had the greatest affect in my treatment is an intervention pain specialist that is also an anesthesiologist (like you mentioned). She also had one Tarlov cysts and also went to Dr. Feigenbaum. I had to stop seeing her because she doesn't accept any insurance. You pay cash when you come in and I just couldn't afford it anymore. I'm already paying more than I can really afford on about 10 different medical bills. I've racked up so many of them over the years I probably will never be able to pay them off in my lifetime. We just got all the blood tests done and they didn't show any inflammatory markers. I know that Dr. Tennant's info. says the tests may or may not show anything.I do have an MRI confirming the arachnoiditis though. I found out a few years ago that if you make sure to tell the MRI tech. to specifically look for something they will. You find out how the medical industry really works after so many years. I'm sure you've found some things out yourself. Like you I've had doctors that were rude and though I was a drug seeker as well. It just makes me furious. I now look at it like the doctors are working for me. If I have to see a new doctor I interview them rather than asking for their help. Sorry for getting off track there. When I see my primary care provider again I'm going to ask about the EDS testing and a referral to a rheumatologist.

I have been in terrible pain since 2003(since I fell on my kitchen floor) but in 2018 things really took a turn for the worse. The only thing I hadn't tried over the years was acupuncture so I made an appt. He put needles in all the way down my spine and the one he stuck in the sacral area on my right side hurt soooo bad! That night my bladder issues got worse and then the following week I went for one more appt. and that night I lost control of my bowels. I think the needle must have triggered the cysts to grow larger. I had 5 cysts (3 large ones) and together they were compressing all 5 of the sacral nerves. I had to sit like that for 3 years while I fought with my insurance co. to cover the surgery. I now have peripheral neuropathy, pudendal neuralgia, and jolts of nerve pain everywhere below the waist! I now am basically bedridden. I spend about 95% of my time on my couch. I can only sit, walk, and stand for a few minutes at a time. I had the Tarlov cyst surgery in Dec. so I'm 9 months into the 2 year recovery. They told me to expect some permanent nerve damage because of the amount of time the nerves were compressed. Now I just lay here praying that I will have some improvement. At this point I will gladly accept any improvement! One of the many weird symptoms that started right after acupuncture is dysphagia (trouble swallowing). I can swallow food no problem, it's the medicine that I have a hard time with. EVERY time I take my medicine 1 or 2 of them get stuck somewhere in my throat and the only way to get it down is to eat something. At the same time I started to get a cold sore over and over again when previously I would get one in the same place about every 5 years or so. Come to find out, the herpes simplex II virus resides in the sacral area so the frequency of the cold sores make sense now. I began snoring and I never did previously. I also began having thrush about every other month and on and off it feels like the area by the thyroid and in my throat right where it meets your chest would get inflamed and swollen. Also, somehow burning mouth syndrome ties into the swallowing difficulties. I have an endoscopy scheduled at the end of September and I'm scared to death that it's going to turn out to be cancer. The other weird thing that I didn't mention because I'm embarrassed about it is... I was just at the dentist a few days ago and I asked about it. I thought it was a sore and that he would just give me an antibiotic for it. I've had it for a few months. I had to keep rescheduling my appt. because I wasn't able to sit in the chair. He says it looks like a papilloma. I told him I was scared to death that it was cancer and he said it would be rare but there are some types that can lead to cancer. I had never heard of a papilloma before so of course I consulted Google when I got home (I know it's not a good idea). What I found is that it's technically an STD, like a genital wart!! I don't recall ever having crazy sex habits so don't think poorly of me! Now I'm still worried that it could be cancer and I have to wait until the end of September to find out. Now hearing that you have cancer it makes me wonder if having the Tarlov cysts or arachnoiditis might make you vulnerable to developing cancer??

If you don't mind me asking, would you share a little more about your cancer with me? Please pm me so I receive an email notification. If you have any questions or want to compare notes on anything please feel free! In the meantime, I hope your cancer surgery has gone well and that your recovery isn't too terrible for you! Take care!

Terri