Hi Telvaker,I am sorry to hear about the status of your pain. It must have been a hard decision to postpone the surgery.
I am putting everything together to go for the phone consultation, although I am also considering going there (from Boston) for a personal appointment with Dr. F. Last week I filled out a survey from the Tarlov Cyst Foundation, and where they asked me to put a pseudonym, I put my full name and contact info. The next day I got an e-mail from Reta Honey, the President of the Foundation, and she asked me if I would like to talk to her over the phone. On Thursday I spoke with her for more than an hour and she gave me important information about TC such as pain management, PT, etc. I can't thank her enough! If you haven't talk to her, perhaps you should try to do so. I may talk to her again soon.
Well, it may be that now things are moving faster in this part of the country. Last Friday I had my appointment with my pain doctor (assistant professor at Harvard) and for the first time in months she is admitting that TC may be the cause of my pain and discomfort. On Tuesday I am going for my third steroid injection, as the previous two did not do all the work. I know that steroid injection "may" trigger CSF into the cyst, but I have no choice, because I need to work now that I used all my medical leave. I told my pain doctor I was going for a second opinion. In fact I am educating her about the existence and expertise of Dr. F and of Dr. Adrian Casey in England, who also operates TCs using Dr. F's technique. She looked at me, took notes and then encouraged me to get as much information as possible before opting for the surgery. It is what I am doing now as I wait for my appointment. I stopped PT because it was giving me more pain. This was a good decision because I was told that PT and any stretching exercise is detrimental to my condition. I am now managing my pain by taking gabapentin (twice a day 600 mg and 900 at night) together with Oxycodone (10 mg three times a day) and aleve. My pain now went down to 4 (?) but there are bad days where I feel no hope. I also walk very slowly and practically don't bend. I sleep on my stomach and rely a lot on ice packs. Now it comes the fight with the Insurance Company (I have Blue Cross Blue Shield). I have no clue as to how much the operation costs (I have heard $30,000, but I am not sure if this includes F's fee. Anyway, you already crossed this insurance path, don't want to bother you with mine.
Because I am still scared about the surgery and about the success rate that Dr. F has had, I am asking some relatives in Europe to do their own investigation with neurosurgeons over there. I want to make a well-informed decision and between now and the time I get to see Dr. F., I have plenty of time to read and listen. I will keep you posted. Wishing you better days!