Hi,
Dr. F. recommended surgery for 5 Tarlov cysts at s1 to s3 due to compression of sacral nerve roots. He stated no guarantees. The nurse stated regarding success depending on what was damaged nerves before surgery. This is scary!
If decide no surgery, the nerves could get worse with damage due to the cysts.
Does anyone have any post op surgery results over 2 years with good or bad results?:confused: Thank you.
Kathryn1, 62 years old, but young in mind and heart!

I am 68 and in the same position. My surgery is scheduled for the 18th of Dec. Besides pain I have terrible internal itching. I would like to hear from anyone who has had success and has had this terrible knawing itch also.
Nonna

Nonna, and Kathryn,
I will at respond to the concerns that you both have. My surgery was on Nov. 30, 2010. I understand that not all patients have the perfect outcome that I experienced, but some of that could be explained by how severe the damage has been to the nerves and surrounding tissue. I am now nearly three years post-op, and I am able to do nearly everything I did prior to my accident. The damaged nerve(s) bothered me for some time after surgery, but I continued with my physical therapy and worked through that. I am 61 years old, and was disabled for nearly five years. I am willing to speak with anyone who has concerns or questions about Tarlov cysts, the surgery, or the recovery process. You can private message me with your phone # or I will give you mine if you want to speak by phone. Full disclosure: I will be serving on the board of directors for the Tarlov Cyst Disease Foundation beginning in 2014. It is one way that I can give back to those who restored my life.
David

Hi David,
Thank you for your reply. I would appreciate more information of prior symptoms to surgery. It sounds like a long recovery but was worth it having the surgery. If you could email me with more information, then I can give you my telephone #. THank you again.
Kathryn1

Dear David. Sorry to bother you, but this is my story. Two and a half years ago I saw Dr. FF. He suggested the surgery, but I was scared to death. Now, I hardly tolerate pain and ready to take the risk.
I am 61 work in the office sitting all day long and taken at leas 6 pills to survive until the end of the working day.
To make a living, I need to work at least for four more years before I can retire.
I have an insurance through my work. Not the best, but it's better than nothing.
I live is St. Louis. I have to start the whole process with tests again according to Dr. F's assistant.
How long did you wait before they took you for the surgery?
How it could work to fly to Dallas? Where to stay after the surgery? How long will it take before I can take the plane to go back home? Should somebody stay with me? What the average price for the surgery, of course it varies.. I understand.
So many other questions, but do not want to overwhelm you.

Thank you!
Toma.

Toma,
I understand your initial fear....having someone expose your spinal nerves is not
easy to accept. In my case, I was willing to accept the risks, as I could no longer bear the near constant muscle spasms, combined with existing in a "drugged-out state" every day.
It was nearly one year from my first contact with Dr. Feigenbaum until the day of my surgery. During that time I underwent a series of tests at Oregon Health and Sciences University in Portland, Oregon. The final test was a temporary nerve block, which confirmed the source of the muscle spasms.
As for travel and lodging in Dallas, I know nothing about that, as my surgery was performed in Kansas City when Dr. Feigenbaum practiced at the Research Medical Center there. I would suggest you contact the staff at Dr. Feigenbaum's office and request information from them regarding hosing recommendations while in Dallas.
If you would like to speak directly with me, Private Message me and we can exchange phone numbers. I'm here to help.
David

David... I hope this is how I contact you.. I am new to this site. I am having surgery with Dr. F on December 20... and I am nervous. I am one of those people whose symptoms come and go.. and are not as severe as some I have seen on here. I wonder if I am doing the right thing to have surgery when I am not as bad as some people.. and nervous that if I don't do it now insurance will not pay for it later, as I am only approved through the end of the year. I would really love to talk to you... but I don't know how the site works and I am not sure how I can reach you. I can give you my phone number if you get this... thanks

Hi Toma, assistant in Dr. F's office should give you all the info you need. Surgery is done in Pine Creek Medical center in Dallas, one of the best. In surgery info I got was everything you need to stay in Dallas, names of hotels, restaurants etc. They will help you with all that. And yes, somebody should stay with you. There is a lot o restrictions after your surgery, you will need somebody around. My husband stayed home with me for 2 weeks. And I had to stay home for 90 days before returning to work.
How long wait before surgery is scheduled depends also on your insurance.
Price is also on your insurance, deductibles and your out of packet. Pine Creek Medical will work with you on payments. I can tell you this much, this surgery is not cheap, in my case it was worth every penny.
I hope everything is going to work out for you. Take care.

Hello David.. I am scheduled for surgery on December 20. I would love to talk with you, as I am getting a little nervous and I have questions... thank you!

Hi Nonna,
I am concerned also regarding surgery. Due to insurances change in Obamacare and being on Social Security Disability but not on Medicare til March, 2014 I am waiting til Medicare become effect. Can I ask you if Dr. F's office gave you what it will cost, your insurance, and if any balance you might have to pay? Where are you from? I am in MA. I do not have the internal itching but do have butt pain, burning, numbness and tingling down the legs, back of my thighs pain, cramping in feet, which prevents me from working. I wish you success in December and hope all goes well. Thank you for your support.
Kathryn1