Hi Good people.
I need info on draining a tarlov cyst as in

How long does the procdure take?
Is it painful in any way whilst it is being done?
And of course how long can I expect it to last?
And what are the after effects if it does not work, as in could I get awful headaches etc?

I live in Ireland and not many options here,

My Neurosurgeon told me over 6 weeks ago that they would not operate on it or drain it but that he would chat to me after the scan & yesterday he decided to drain it (Aspirate) and told me that I may get some relief or it could make matters worse and that I could also get awful headaches after it being drained and of course it can/will refill with spinal fluid.

Reason he has decided to do it is because the cyst is 7cm and it is trapping a nerve that has me crippled with pain that all of you are well aware in yourselves.

He told me that I should seek a second opinion with another Neurosurgeon which I intend to do but as I said not many options here in Ireland and not many Neurosurgeon's either...................... LOL

Hannie,
I have not heard of any successful "draining" techniques for Tarlov cysts. You may consider consulting with Dr. Feigenbaum in Texas, as he travels to Cyprus to treat patients there through his work with AMIS.
Bridges

Thank you very much Bridges for your prompt reply to my question.

Any idea as to how I could contact this man ???

I will find out if my insurance will cover me to travel to Cyprus and what after care if any I can get in Ireland after the procedure, I do know they say that if a procedure cannot be done in Ireland that they will cover it within Europe.
LOL not sure if Cyprus is in Europe

I have also seen somewhere that there is a good man in France ??

Hannie,
The Tarlov Cyst Disease Foundation has contact information of medical providers experienced in treating Tarlov Cysts. Full disclosure: I am now a Board Member of the Tarlov Cyst Disease Foundation.

Dr. Feigenbaum does phone consults. From Ireland, I think his office number is:

(00) +1-214-351-8450

I forgot to mention, my surgery took about two hours for 8 cysts, L4-S5 and a dorsal plate. I was in the hospital for three days, but could have stayed another day by choice. Pine Creek is a very pleasant private hospital with wonderful nurses and great care. My follow up visit was 8 days after surgery, and I flew back nine days after surgery.

Along with the sacral laminectomy that Dr F does, the wrapping of the cyst, the draining of the cyst is permanent.

With needle aspiration that some other doctors offer, it is temporary. The cysts will refill, sometimes almost immediately.

Whether or not the draining of the cysts will work, depends on the approach as mentioned above and how much of the nerve damage is reparable. Generally, the longer one has had symptoms, the harder it will be for the nerves to recover. Also, nerves take a relatively long time to heal, months to years. Dr F set my expectations at up to two years post operatively to see improvement.

That said, I felt a noticeable difference in some symptoms immediately after surgery and my symptoms were progressively worsening over three and a half years. I'm thinking the immediate improvement was from nerves that were being compressed by the cysts, but not damaged enough they needed much repair to work again. Also post op, some nerves get irritated by the surgery itself, so I was warned some symptoms may return or worsen for a while before improving again. At two weeks after surgery, I'm feeling a bit of that, but can still have an overall improvement in other symptoms.

Looking back, it seems you've been seeking care for a while. I'd highly recommend contacting Dr. Feigenbaum. He was straight with the facts with me and genuinely wants to see his patients improve.

Hi, I had mine drained, what a relief first time i could bend down and put socks on in twelve years, but almost as fast it started to refill, took approx 3 days to completely refill then back to normal pain, i know that everyone will respond different, hope you have great results

Thank you all so much for all your input and patience with me.

It is a week today since I have both of my TC's drained.

I am not in the bad pain I was in from the trapped nerves but it is still there and then I have a few years left for the lower back to repair itself & I guess from the damage done to the nerves.

I am having headaches which I would presume would be very bad only for all the pain meds I am still on.

I guess and would hope NOT... That they are due to the TC's filling again with spinal fluid but I am getting out of bed now in the mornings putting my feet on the floor for the 1st time in years without chronic pain in my back so I guess it is working so far and I find that I am forgetting to take my meds at the proper time's as I dont feel the pain as much any more.

I am praying that all my very bad pain is now over and I can get on with my life to a better pain management.

Nothing prepared me for the headache the minute they began to drain the spinal fluid form the TC's it was terrible and I thought I was going to die but they then rehydrated me quickly, gave me some pain relief and then sedated me for the 4 hours that I had to lie on my back to let the spinal fluid settle.

To be honest I was terrified of the whole procdure because I could find not find anything on my research in TC's and the drainage (apperation) for the whole of Ireland and when asked how many they had done and was told
only 5 in 18 months and the reason mine were being done was because both were so large and trapping nerves on each side.

So lets hope that this will work for me and if not they will drain them for a second time and then said surgery will be the next option which I hope not as they know nothing about TC's in Ireland and I just cannot afford to go anywhere else to get them done and if treatment is avaible in Ireland for me then my health insurance will not pay for me to go to Europe to see this wonderful man Dr Feigenbaum, so that will never be an option for me.

Just to add that I am very weak, tired no energy what-so-ever since I had this done last week.

Also feel very faint and nearly fainted a few times yesterday I did not expect to feel this way at all after having them drained??

Anybody else ever felt this way after ??

hi hannie,
sorry to hear about your pain. check AIMIS on youtube. the testimonies provided by patients are very powerful. the cost of surgery in cyprus is much lower than the one in the U.S. Hopefully your insurance covers the whole procedure should you need it. If I were you, I would request a free phone consultation with Dr. Feigenbaum. He will request that you send the mri you have done. the waiting list for phone consultations is long...5 months or so.
Good luck!
claudia