I have tarlov cysts as well as fibro and a couple other things and I couldn't for the life of me figure out why I was itching soooooooo bad. I went to at least three different doctors and one a few times but nothing worked. Finally I tried my own thing and dropped sugar and any yeast breads for at least a couple of months. I also change my toilet paper. After almost two years, it went away. I occasionally eat sugar but not much and I definitely eat breads but I've stayed with the same new toilet paper as much as possible. I don't know which remedy worked or if this will help but it did me. I hope it will help you. It can be miserable.

I have the itching also but the pain in my buttock,leg & thigh override the itching,also have lost holding my bladder.Can you tell me how your surgery went and was it worth going through,also the name of the DR.you used?
Thank you so much for reading this.I am in misery with so much pain.

Hello pattycake,

Welcome to the NeuroTalk Support groups.

I'm sorry that you're in so much pain. I also wanted to let you know that the person that you are asking hasn't posted here in a couple of years or more, so they may not ever see your post.

Hopefully someone else from this Tarlov Cyst forum will see your post and be able to respond to your questions.

take care there.

When my problems started I had itching but it was outside not inside. It felt like a yeast infection if you've ever had one of those. I had surgery with dr f on November 11, 2015. I am 3 months post op. I do not feel better, most days I feel worse than I originally was. As of right now I wish I hadn't had the surgery but am hoping that changes. They will always tell you it takes time. I think people who have suffered a long time just quit posting we have accepted our situation and are not trying to find answers anymore just trying to find peace and comfort each day.
My surgical experience was not pleasant. I know a few that feel the same way. My prior opinion was if a person had surgery sooner rather than later it would give a better outcome. This started 3 years ago for me I had 7cysts s1-s4. I know someone who hasn't hit the year mark of finding out she had cysts and had surgery 6 weeks after me and she's still in a lot of pain. So, I don't know if surgery as soon as possible is the answer either. For me, if I had to do it over as of right now, I would have waited longer to have the surgery.
The recovery and healing process is very hard. You need to have a lot of support and help. I took 3 months off work and mentally was ready to go back but physically it's hard. I'm hoping to build up my endurance and muscle strength. Feel free to ask me anything. Take care

Sometimes I have that internal rectal/vaginal "itch" too. My symptoms come and go and are almost always different when they return. I wonder if that is normal? But yes... internal itching... I can relate to that!

Karhryn, I am also looking at surgery and wonder if you had any response to your question.

I guess everyone who had the surgery is better and not on here. I did get one woman tell me to check out Dr. William Welch in Pennsylvania. She said 2 people she knows both had good results including herself. I called today and was told he won't remove the cysts unless you have tried aspiration or fibrin glue without success first and referred me to Dr. Long in Maryland.

IF dr long says a letter that you want surgery, you don't have to have FGI first. I had a friend just went there yesterday with no FGI and he was willing to do surgery. JUST have dr long send a letter or send what papers dr long gave you in the past. My GF couldn't get hold of dr long so she sent them the info. I know people went to see him too with no FGI & he was will to do surgery. WHo ever said that, it is not true. Sorry that happened to you.

I am the one who had the successful surgery with him in 2011. I was back to work in 3 months. I had FGI because I wanted to try that first. Not because I had to do it.

Dear painintheazz,
The question is to have surgery or not? As you can see, not many replies after 2 years or more results from patients after having surgery: good or bad. There is limited information to find first hand experience from patients. THe other question: How much pain are you in? Can you still function doing normal routine activities? My opinion, as long as I am able to function with daily living activities without outside help than surgery right now is not the answer. Having surgery is very risky on the spine and doctors cannot guarantee results. There is always the possibility that you could be worse after surgery. If one is desperate, than go ahead and have surgery. If not, look into other ways to combat pain and to live a relatively normal life as much as possible. I live with nerve pain in the legs, feet, and muscle spasms in back daily, limited to walking 15 minutes and best in recline position when sitting but I can still enjoy life otherwise. I am on disability. Your brain is controlling the pain, program the brain differently and see what happens. Try yoga and meditation and massage. Best of luck to you.
Kathryn1

Did you meet with him in person? I am going through this now and I cannot deal with the 24/7 pain and am considering surgery.