Tarlov Cyst on the spine: Any advice?

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!!

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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.

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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!!

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Anyone know of someone in pa or near by that treats these

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I ended up with multiple Tarlov cysts in my sacral area after a slip and fall 15 years ago. The cysts were never mentioned to me until 2018 even though they were there the whole time. Doctors generally tell you they don't cause any issues and refuse to discuss it any further. I had to go through numerous doctors to find just one that would consider that, if they weren't able to figure out what was causing my pain, that these cysts might be the issue. Ridiculous to have to go through all of that but that's what happened to me. The pain and symptoms robbed me of a decent life with my husband, kids, and other family. I currently also have a very hard time standing, sitting, walking, bending, etc.and that is just the tip of the ice burg. I can't even sit on my right butt cheek because of all the nerve pain. The symptoms have just snowballed and my health has just plummeted over the last 6 months.

You need to push the doctors and keep going until you find one that will acknowledge these things. They may make you out to be crazy but you're not and there is help out there. They DO cause issues and you are entitled to have them treated. I don't want to read about other people who have had to live with the pain and symptoms as long as I have. I want people to get the help the need before getting to the point that I am at. I was told that there are only 3 doctors in the U.S. that specialize in treating these things. Dr. Feigenbaum at Pine Creek Medical Center in Dallas, TX has the most experience and positive outcomes. I'm currently waiting for a surgery date. The surgery is a big deal and can take 2+ years to recover because nerves grow slowly. Mos. t people report relief of symptoms soon after surgery.

Hope this helps you a little bit. If you would like any other info. look up The Tarlov Cyst Foundation. If there is anything else I may be able to help you with please feel free to ask. Good luck to you and take care!!

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Hi,

Dr. William Welch in the Neurosurgery Dept, at Penn Medicine will consult with you and he also does surgery to drain and wrap them if he feels you are a good candidate. I had surgery in 2021 with Dr. Feigenbaum in TX but before that I got a second opinion from Dr. Welsh and found him to be very helpful!

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