Tarlov Cysts: Suffering with severe symptoms, what helps?

I’m sorry for your pain Keep searching for answers. I have a small Tarlov cyst that causes minor problems compared to yours. I have done considerable research and can share a number of resources with you. I will send you those via private message. Johns Hopkins has a Tarlov Cyst Program and clinical trials. For starters, Look up The Tarlov Cyst Foundation and join the National Tarlov Cyst Facebook page where you can learn from other’s experiences.

I also have Tarlov cysts. One day I just started falling. Then as it was getting worse, I was in our pool and while swimming got a really bad ground pain. It kept getting worse. I was treated like a guinea pig for over a year. My 1st appt I asked for an MRI but instead was given a set of SI injections and given muscle relaxers. Finally Dr ordered MRI which revealed multiple Tarlov Cysts. I kept called Dr to get MRI results & he never called me back! I went and picked up my MRI disc & report. I was shocked to read results. Again I
I had to start all over with new Drs. I was given multiple injections, which didn't help at all. In fact the last 2 caused increased pain. I did a trial for a spinal cord stimulator & had good results with a few bumps in the road. I had a permanent one implanted but I fell and broke the leads. Then I had a paddle stimulator implanted & it did not work at all. I had it removed & just had pain treated with medication. I since .moved to Florida & I'm starting all over again. I did have another MRI just done. My new Dr didn't listen to me & ordered a lumbar MRI, but my large Tarlov cyst was at S2. This new MRI stops at L5. There's more bad news, because one of the smaller ones is now 1.9 in size and my symptoms are getting worse. My left foot now gets numb & the groin pain in through the roof. Sitting, walking, standing, bending all hurt so much. This feels like sciatica pain in steroids 24/7. My new Dr cut my pain meds in half but added something new. It was horrible. I woke up with sores on my mouth from the pain patch. Even my tongue hurt. My pain Dr, he's a PA, is almost insisting I get another stimulator. I don't want it. I've done it 3 times if you count the trial. My back looks like a road map & the battery pack was in my upper butt. That incision was opened and closed 3 times. The scar even hurts. One scar on my back is so deep and dark purple, I feel so ugly. I'm going to try and be seen at the Mayo Clinic. I will feel like I'm being treated by the best. I'm wondering what your symptoms are. My bladder feels like it's shot, my bowel habits have changed. I have contact pain in lower left back, groin, legs and now numbness in that foot. How about you?

I have severe pain in my lower back. Constipstion from blockage from the inflammation. I have scoliosis so combined with the cysts I'm just miserable. I'm unwilling to do the surgeries and pain meds. I have 7 children i cant be mentally unclear. Some days i cant walk 10 steps without something to hold onto others im fine. During my periods its the worst! Today is a bad day i feel like i have something in my tailbone trying to explode but being held together by my skin its BRUTAL. I am in tampa and have given up finding a doctor who will accept these are really causing me any issues. I cant feel my bladder (or vagina) 90% of the time. I just trained myself to go to the bathroom on a schedule so i could stop having embarrassing situations. I'm adapting!

I also have a Tarlov Cyst and have done a lot of research. Please look up the Tarlov Cyst Foundation. There is only 4-5 doctors in the country that do surgery on these cysts, which it sounds like you need. There is a list of these doctors on the Foundation website. There is one in Miami. Spinal stimulators are generally only recommended if surgery fails. I will correspond privately with more resources. I do understand the misery of the corresponding symptoms. Most doctors do not recognize that these cysts can be symptomatic.

@darlene651022 I'm sorry you are going through so much. I am a Mayo Spine surgery patient, although mine was cervical and I don't have the same experience as you do. I wanted to share this link if you wish to request an appointment at Mayo. I hope you find some help.
http://mayocl.in/1mtmR63
Jennifer

There are no doctors at Mayo who treat Tarlov cysts. There is one neurosurgeon listed on the Tarlov Cyst Foundation website. However, my neurosurgeon ( who trained at Mayo) called her on my behalf about Tarlov cyst surgery and she said she doesn’t do it but is aware they do cause symptoms. There are two doctors listed on the website who are considered the leading surgeons for Tarlov cysts and both do free consultations if you send your MRIs. They are Dr Frank Figenbaum, Dallas Texas, and Dr Rudolph Schrot, Sacramento CA. Their contact info is listed. You do need a Sacrum MRI that includes the coccyx. PM me if you want more information.

@westcom I think there may be some Mayo doctors who treat Tarlov Cysts. It would be worth a call to the neurosurgery department to ask which surgeons treat them if a patient is looking for a consultant with interest in treating them. I don't have experience with them, but was able to find literature about Tarlov Cysts that named my spine surgeon, Jeremy Fogelson, and Ross Puffer, who was a neurosurgery resident as authors when I was a patient in neurosurgery at Mayo. Dr. Puffer may have moved on since completing his studies. In the credits of the papers listed, there is another by Dr. Q, Alredo Quinones-Hinojosa who is at Mayo in Jacksonville, FL. Here are links to the literature I found.

Tarlov Cyst Causing Sacral Insufficiency Fracture
https://pubmed.ncbi.nlm.nih.gov/28521343/
Diagnosis and management of sacral Tarlov cysts. Case report and review of the literature
https://pubmed.ncbi.nlm.nih.gov/15350046/

Thank you for the additional information. My neurosurgeons call to Mayo was recent.

I too suffer with 2 large Tarlov Cysts. They were discovered when I complained that my back became chronic. I'm a bone cancer survivor and I lost most of my hip bone without replacement. (No insurance). The local PD were after my grandson and I was helping them catch him. When he ran (both times) they turned their anger on me. They assaulted me mentally and physically. Made fun of my disability and really hurt me. Throwing me against the tall cruiser and throwing me to the pavement from the tall patrol truck.
But can I get compensated? Nope. Just suffer old lady.
I had 1 injection that didn't work. Last week I had 4. No relief. Tonight I went to the ER pleading. I got my 3rd shot of toradol. 😞.
My friend and DR of 30 yrs passed away. Now no one will help.

Firstly, although you didn’t say in your post, I hope you reported these officers that “turned their anger” on you, mentally and physically assaulting and throwing you to the pavement! And you say you can’t get compensated? If this is the whole story, get yourself some good legal representation.

Secondly, there are still plenty of good doctors around to help you. If you have a PCP, ask him/her for a referral. If not, ask at the ER.

I hope you can get the help you need, medically and legally.