Tarlov Cyst on the spine: Any advice?

in reply to @kgrainger I had a Tarlov Cyst removed from my sacral spine many years ago by Dr. Rudolph Schrot who is associated with Sutter Medical Foundation in Sacramento, CA. In fact, he recently did a study on the removal of these cysts. I had a very good outcome as a result of the removal, and the recovery time was actually quite short.
Best of luck.

Thank you, I have had so much happen in the last two years with my health and I am getting no where. My doctor sent my records to Mayo with a result of the waiting list is at capacity. I haven’t been able to work for almost 5 months now. I feel so defeated most days

I'm not sure if anyone has mentioned arachnoiditis. If you have an MRI, I highly suggest you find a Dr who actually knows what arachnoiditis looks like. That in itself can be a feat. Good luck.

I just sent my MRI to Dr Tennent and he said I have it. Looking for a doctor in the south Alabama area that knows about it and can treat me.

My MRI showed a Tarlov Cyst several years ago. My doctor back then said that would not be the cause of my pain. I got a second opinion where a MD PhD said my spine WAS the cause of my pain but didn't offer insight on where to look further into it. I went to the Tarlov Cyst Foundation after a couple of years of getting injections in my SI joint a d hip bursa, but I gave up pursuing research since my doc had deaf ears on the subject. I was given Gabapentin which I could not tolerate at all. Then my doc put me on Lyrica to try and it helped but I gained 17 pounds and it caused me to not be able to be very bright trying to work my difficult job at my company. Currently, I have arthritis in my left hip, the same side my Cyst is on, and my new doc in the state I moved too thinks the hip and groin are not related to the spine.

I had surgery for this because mine had worn away my sacrum till it was paper thin. Before this I had mine drained at least 4 times. I had a laminectomy and a plate put in L5 -S1. The plate has since broke and the screws are not where they were placed originally. I suffer from chronic pain and am on Percocet 4x a day plus Cymbalta because I now have neuropathy. My advice to you is don't get the surgery unless you absolutely have to. See a pain management doctor and go from there.

Mayo Clinic does not have a doctor that specializes in Tarlov Cysts. Definitely don't listen to any surgeon that tells you that the Tarlov cysts are not the cause of your symptoms. If that is what you're told then it's time to move on. Definitely don't schedule any more procedures and don't give them any more of your money! There are only 3 doctors in the U.S. that do. I went to TX to see Dr. Frank Feigenbaum and he performed my surgery. I highly suggest sending your MRI discs in and scheduling a consultation with him. If insurance says they won't cover it like mine did tell there is no provider in their system that specializes in Tarlov cysts. Your primary care provider can request that you see Dr. Feigenbaum. Please don't wait on this. I was stuck for many years and I have some serious issues now! You will also find a bunch of information and support at http://www.tarlovcystfoundation.org I started crying when I started reading on that site because every single one of my symptoms that the doctors could not find the cause of for 15 years was finally validated!! You will also find priceless information and symptom management at http://www.arachnoiditishope.com It's one of the best sites I've been to. It's not just for arachnoiditis, which you probably have after all those aspirations and other procedures, but it also links other conditions like Tarlov cysts to other conditions. Please, anyone that sees this, go to these sites!!!

Please don't let your doctors ignore your Tarlov cysts. It's partially not their fault that they are not educated on Tarlov cysts in med school but they shouldn't be ignoring your requests to look further into the situation and ignoring your symptoms. I went 15 years with no diagnosis and was in the same boat you are. I finally realized that the doctors are supposed to be working for us, patients. After all, I do have to pay the bills for their services, or lack there of. After my experience this is how I look at it now. I apologize for being so salty but I don't know how else to feel about being ignored and not knowing what was wrong for so long. My cysts could have been addressed many years ago but they were ignored and because I can no longer work I had to sell my business. I feel like the permanent issues I have now absolutely could have been avoided had my doctors taken the time to dig into what was causing my symptoms and looked beyond the normal checklist of conditions. I swear they have a checklist of conditions. When you get an MRI if they don't see any of the conditions on that list they just tell you they don't know what the problem is and load you up with medications. The most important thing I can tell you is you have to be your own advocate. Don't give up and don't take no for an answer. If a doctor ignores your concerns and/or symptoms or tells you the cysts are not causing your symptoms you need to move on. Don't put yourself through any more procedures and don't waste any more of your money, trust me. I learned a lot about the healthcare industry throughout the years. Contrary to popular belief, they are not there to cure you, rather they just throw some prescriptions at you to feed big pharma, schedule you for more and more procedures to feed the healthcare industry, and call it a day. Granted, there are some that sincerley want to help but they're very tough to come by! I had the best luck with an integrative pain specialist. Her name is Dr. Linda Bluestein. I think she sees patients online now. Definitely look her up! She also had a Tarlov cyst and had surgery so she absolutely understands the symptoms you're experiencing and what she prescribes/recommends absolutely helps! It was just by chance that I ended up with a doctor that experienced the same symptoms that were plaguing me for so long. I don't know about your pain management facility but the ones I've gone to over the years didn't care about my pain at all. All they wanted to do is push more and more procedures (injections, nerve blocks, etc.) at every single appointment! I've been "released" (kicked out of 3 of them) but not because I did anything wrong. It was because I told them I don't want to do anymore procedures. They apparently didn't make enough money off me coming in every other month to renew my prescription ($435 for maybe a 10 min. appt.). That's a lot of money when you haven't been able to work for a while! Patients that hadn't earned their trust that they were using their medications as prescribed had to go in every month. Dr. Frank Feigenbaum from TX is who did my surgery. There are only 3 surgeons that specialize in Tarlov cysts in the country and he's the best! I found a lot of help, understanding and validity on http://www.tarlovcystfoundation.org Another site that is extremely helpful and has tons of great information and recommended alternatives to big pharma is http://www.arachnoiditishope.com Tarlov cysts are linked to arachnoiditis and other conditions as you will see on the website. Dr. Forest Tennant is awesome! You can contact his team directly with questions and they're great at getting back to you in a timely manner. I wish you the best and hope you will be strong and fight for yourself! It's the only way to get the help you need and deserve. Don't delay because the symptoms only continue to get worse. I have a bunch of permanent symptoms now and I wish I had someone to give me the information I described above. Take care!!

The most beneficial treatment you will find is using the recommendations Dr. Tennant provides on his website. I would recommend staying clear of prescription drugs if you can. You can ask your primary care provider if they feel comfortable prescribing some pain medicine for you so you don't have to go through the horrors of pain management. If you have to go to pain management please don't agree to continuously get their injections, nerve blocks, etc. They just try to drain you of all your money and those things can actually make your pain worse! See my other posts on this. Also, I just read an article talking about Moroccan saffron being great for inflammation in the spinal cord and nerve pain. Best of luck to you!

Dr. Frank Feigenbaum in TX did my surgery. There is only one more surgeon in the U.S. that specializes in Tarlov cysts and he's in MD I think.