Perineural or Tarlov cysts

@cookiegirl Dear Cookie girl. I had a fusion back surgery at Mayo Rochester, MN. It went from T-10 to my pelvis. I had degeneration that caused a scoliosis and my L4 & 5 had stenosis. My surgery was 9 hours. Had an excellent surgeon. Yes, I was in pain, but they took care of it with 2 pain pills. I had to be in the hospital for 7 days and usually it's for 4 or 5 days, but I had low blood pressure that almost made me pass out. They finally discovered it was the Valium and once they took it away my BP went up. I also had to have a red blood infusion, because my hemaglobin was low. I did fine at home with talking the medicine every 3 hours the one pain pill and then the other one. My husband even woke me up at night to give me the pain pill.
I had my surgery on June 9th and so I am almost 3 months post-op. I hardly have any pain. Sometimes it aches. I am to take shout walks several time a day. My buttock will start hurting on the right side ( that was the side that bothered me before the surgery. I have muscle pain in my knee and below, they are getting strong. Can you get your surgery done at Mayo? I am so sorry you have so much pain, I hope you find a good Neurosurgeon. If you can get referred to Mayo by your primary care. Take care. You will be in my thoughts and prayers.

If you have any specific ? about how to deal with insurance companies, please feel free to ask me. Even being an RN, it was not easy to plow through, but it did help me write letters using specific pointed terms, etc. I will help if I can. You can pm me if you like!

@jenapower Hi, I don't know anything about your problem, but wanted to let you know I'm praying for you. I'm sad that you have been through so much. I can't imagine what it's like. I'm recovering from a 9 hr fusion back surgery, but that's nothing to what you are going through.
May God Bless you and be with you.

My insurance co. finally approved my surgery thanks to Reta Honey Heiers from the Tarlov Cyst Disease Foundation http://www.tarlovcystfoundation.org She requested that a code specifically for Tarlov Cysts be added and has been fighting for it since 2016. On Oct. 1, 2020 it went into effect and that is the only reason my insurance co. approved my surgery. I had to call her directly and thank her for all her hard work. If anyone else is successful in getting their surgery approved due to the new ICD code please thank Reta at http://www.tarlovcystfoundation.org

I had the surgery on Dec. 8. 2020 by Dr. Frank Feigenbaum from Feigenbaum Neurosurgery - Tarlov Cyst Center in Dallas, TX. Dr. Feigenbaum is the leading expert in Tarlov Cysts/perineural cysts having done many more surgeries than anyone else. Anyone interested in this surgery must understand that the recovery period can be 2 years or more because nerves take a very long time to regenerate. Dr. Feigenbaum said it best in one of his videos I found on Youtube: He can treat the cysts but he cannot treat the nerves. You have to understand that recovery is different for all of us because we are all "wired" differently. If the cysts have been compressing your nerves for a long time like mine have you will need to accept that you may very well have permanent nerve damage to some extent. All I was able to do prior to surgery is lay on my couch 95% of every day because I was in so much pain.

Now, I have to admit that I'm still in a lot of pain and will have to take more pain medication for quite a while but knowing that the sacral nerves are no longer compressed making my symptoms worse gives me piece of mind. I had 5 cysts. They showed me on a model where each cysts was. There are 5 sacral nerves (10 bilaterally) and all of them either had a cyst or was being compressed by a cyst from the nerve next to it. I had no idea it was that bad! They told me that I am on the extreme end of the spectrum due to the extent of the nerve compression, the length of time I've had symptoms, and the toll they have already taken on my health. They also found a tethered cord (fatty filium) and release that. Although rare, they normally find this at birth but in my case I acquired it when I fell in 2003. All these years it has been pulling on my spinal cord causing severe pain.

This may be too much info. for some but others will want to know these details because they are having similar issues. I'll just mention the main ones. So far my vaginal and rectal areas are totally numb, which makes wiping very interesting, but when I do wipe I get some pretty bad nerve pain. They said this is normal right after surgery but should get better over time. The bladder issues are a bit worse right now because sometimes I can tell I have to go and then other times I have no idea and it just happens. Same with the bowel issues. The tailbone area has a deep, nagging pain and then it spreads down my butt cheeks and down both legs. I can say that my hip pain and lower back pain has already improved about 65% though. I'm only 11 days out of surgery so I will have to wait and see what the symptoms are like as time goes on.

If anyone has any questions please PM me. I am not on here all the time but will check in here and there. Please give me time to respond to you.

Wow! Best of luck in your very involved recovery! I am glad you are getting pain meds to help you!

Hi everyone. I posted back in 2019 re: my daughter's diagnosis of TC. She had surgery with Dr. Rudolph Schrot in July 2019 and seems to be doing well 1-1/2 years later. Feel free to contact me if you would like any information. It was a rather long odyssey, including a very deflating experience with a neurosurgeon at the Rochester Mayo (this doctor had successfully treated at least one TC patient maybe a decade ago at another well known medical institution). However, I understand from another TC mom that this doctor's colleague, Dr. Michelle Clarke, is sympathetic and willing to look into treatment options if you are headed to the Mayo in Minnesota. Also, in addition to the organization headed by Rita Honey Hiers, there are good Facebook support info where I found the bulk of the resources needed. I remain active on these sites and it's amazing how much has changed in just over two years... there are more and more doctors that recognize this condition... but you have to consult the right ones. And in our case, lots of prayer. I attribute my daughter's recovery to Jehovah God, Dr. Rudolph Schrot, and the good people on the FaceBook support sites. Best to you all as you navigate this tricky condition.

Hey there. so glad rita did that. I just love that chick. She fights more for patients than most doctors do. I am hoping you might be able to help me out. Or anyone else who reads this, for that matter. I have a very unique situation, so please try to refrain from comments that might freak me out. This will makes sense when you read this. I have one TC, right, S2. I found it after I read my MRI image that was given to assess pelvic floor function after two GIs over prescribed laxatives for almost 2 years. As you can guess, this is all bowel related and it began after I witness the las Vegas shooting in 2017. I had moved to las Vegas 4 hours before the Mandalay bay shooting and had moved from an abusive situation so I was already a mess. This added stress led to constipation. I have a history of constipation when stressed and moving, plus my bowels were never clinically normal. Meaning, I would go every 2 days. I never had an issue and life was great. I went to a UC health facility that claimed to be #1. They were not. For two years now, daily, second to second I am suffering greatly. I don't have an urge to have a BM at all on my own. I was told to induce diarrhea daily, clean out my colon using fleet saline enemas and mirlalx preps (8 caps every three days to wash out) this is what led to the MRI pelvic assessment, which is where the TC was discovered. Like you, I went on YouTube, found Dr. Feigenbaum, and finally flew to Dallas the week you were having surgery. Due to my unique and complex case, its unclear if the cysts are the issue or not. To date, I suffer so much with discomfort and my main stepmoms are the lack of BM, the lack of urgency to go. What makes this complicated and hard to distinguish the pathology is the fact I have been dependent on cathartics to have a BM. In short, I have not had a solid stool in over a year. I was told to drink the preps until I force it out via fluid. This also increased daily vomiting and I gained 30 pounds in less than a year. However, I know bowel dysfunction is a symptom of S2 compression and is common with TC sufferers. I don't know if my issues are related to the cyst or what has occurred with my entire GI. As it was explained to me, the anal internal spinchters don't relax, therefore, you do not go OR you go and do not know it. Its clear that I have more issues going on here. He didn't say I need surgery ASAP. He did say that, of course, the cyst wont go away, that he can off pressure but not cure the nerves (if damage has occurred). I really like this Dr and love that is honest, to the point and consistent. With that said, my symptoms are day to day and each day I don't have a BM it causes anxiety and panic attacks, knowing in three days I have to another bottle of mirlalx. I hate this. When you, or others who might read this, say they also constipation issues, do my symptoms sound TC related? This seemed to get worse the more I was told to increase the laxatives and use more enemas. FYI, TC dilate in response to an increase in intra-abdominal pressure. This was the case with me.
1. lack or urgency to go (I use enemas daily so that might explain this in part. the rectum is absent of enough stool to activate the stretch receptors, which initiate the urge to go).
2. I have a ton of bloating and trapped gas on my descending colon. Again, the pelvic nerves S234, innervate the left side. with that said, I am not sure if the TC is responsible, even in part, for this.
3. When I do go by getting an urge, its still very very thin, but this could also be due to the lack of bulk or meals and the motegrity. Has anyone else experienced this (in a way, I hope not!). Thank you again! Hope you recover well. Its only been a month for you so hang in there.

@cookiegirl

Just wondering if you have gotten any help and where you're sitting with your Tarlov cyst right now. I got help and am willing to share the info. I have if you are interested.

@cookiegirl

I am not on here all the time. I check in periodically so I may not get back to you right away.

If anyone else still needs help or would like some info. please feel free to contact me via PM

Hi Jennifer. I realize this is an old post. I too Have Tarlov Cyst at S2 and S3. Have you had surgery yet? I am Awaiting consult with Dr F out of Dallas. I dont Think anyone at Mayo truly acknowledges them as symptomatic or operates on them. I have Ruled out every possible thing leaving only the Tarlov Cyst. The vaginal pain is debilitating.