Tarlov Cysts and p Neuralgia

How many people with p n symptoms have Tarlov Cysts in Sacral canal?

[anna1234567]

I have and I had surgery on my largest cyst.

[Hidden in reply to anna1234567]

Thank you for reply.

Has the surgery helped all the pain and do you feel better?

Was your surgery with Dr Feigenbaum?

Really appreciate your reply.

I'm unsure what to do next.

Best wishes from Korin x

[anna1234567 in reply to Hidden]

Hi, I had surgery in Europe. I had been in contact with many neurosurgeons, incl. F, but there were a few things I didn’t like, so I had surgery in London . My pain was better for the first year, but a pressure in my buttock developed into an almost unmanageable pain. Maybe bc the pudendal nerve got compressed by tight muscles. I’m on the list for a pudendal block. Waiting for the gyn to start up the regular treatment again.

[Hidden in reply to anna1234567]

Thank you for replying. Sorry to hear about buttock pain.

Did Mr Andrew Casey do the surgery please?

[anna1234567 in reply to Hidden]

Yes he did

[Telvaker in reply to Hidden]

Are u talking about Tarlov cyst surgery ? How long have u had symptoms?

[Hidden in reply to Telvaker]

I'm considering Tarlov Cyst surgery but also have pudenal Neuralgia symptoms.

Did you have surgery?

[Telvaker in reply to Hidden]

Yes, I had surgery 3 1/2 years ago I always question whether my pain was was my cysts or PN. I joined fb groups after my surgery so then only became aware they could go hand in and hand. I was always jealous of people who seemed to get a definite answer from a dr as to where their pain was coming from, I never had that. Drs never had answers for me....I started with a stinging in my pubic area while exercising, then burning in perineum and sitting pain. I did a lot of Pt for pelvic floor, nothing helped. I finally asked for an mri and they found nothing. I sent my MRIs to Johns Hopkins that’s the first time they mentioned Tarlov cysts in the radiology report. I went to Dallas met dr f and scheduled surgery. There again amazed at people reporting how in a week or so they were up and walking. I could do nothing...very hard recovery for me. About 6 months after surgery I broke my foot. Crutches after surgery was unbearable and I’m sure hindered my recovery. Once I got past that I felt improvement. I can sit longer than I could before surgery. The burning in perineum is gone. Very lucky to have a beautiful sit / stand desk at work. I met a chiropractor that helped me also. He started stretching my legs and I panicked as I hadn’t done that in years. Changed my life ! I can now walk miles but I have to really stretch out afterwards which feels good. I feel my problems started with exercising using kettle bells and squats and a lot of personal stress. Stress that put tension in my body that I did not recognize. I don’t know if I would have surgery again it was not a good experience for me. But, would I be where I am today without it? I don’t know...the part of my life that I lost that I will never get back is my ability to have an orgasm. Very heartbreaking. I could feel it going as it got harder and harder to achieve and then eventually it was gone. If u are starting to get numb in your vagina I would do the surgery and do it soon as I think the sooner the better then. If I could get that part of my life back I would for sure do the surgery again even tho there are no guarantees I think I went about 2 years with symptoms before surgery. I have a friend in Boston had the surgery a bit after me and is doing great. She was fortunate and took a year off work. I was off work 3 months. The longer u can take off work the better. Happy to answer any questions u have. I’m a 56 year old female from Wisconsin

[Hidden in reply to Telvaker]

Thank you so much for your reply. Very helpful and very interesting but obviously sorry to hear what you have been though and particularly loss of orgasm.

I will be in touch soon.

Unfortunately I'm in UK and obviously difficulty with travel etc at the moment. I understand that there is a surgeon in the UK, Mr Casey, who might be able to help. Touble is here everyone tells you that the Tarlovs can't be symptomatic! Very frustrating! I can't bear living with this. Just want some life back. Having Pelvic physio but feel it's getting worse.

I'm 57 year old female. Badly affected rear end and vagina, perineum etc. Even legs affected.

Thank you, thank you, thank you.

Talk soon xxxx

[willemine]

I knew a women how couldn t sit they operate her and couldn t remove the cyst because it was to close to her nerve system but they emptied them and fold them together.