mosaic9 Tarlov cyst  disease ©

Tarlov Cyst - Perineural cyst - My story

the little mallet on my knees…then he made walk, run up and down and then skip outside his studio in the corridor. Oh my God I was in such pain; I couldn’t believe what was happening. He then left to go to watch the DVD of my MRI scan in another room. After ten minutes he was back with his diagnosis. “Lumbago is your problem and you should do more exercise...” Ok and what about my 2.5 cm cyst I asked. He arrogantly told me that probably I had that cyst since I was a child and it is not the cause of my problems. He finally added”do not let anybody touch your back; you do not have anything wrong. I paid my 150 euros fee and left feeling disheartened.

I was feeling confused and angry. What if is he right? Am I too sedentary and need more exercising? Before it was arthritis now it is lumbago…Are the two doctors wrong? Are they both right?

Dear Doctor, I came a long way to see you, but your arrogance was more painful than the money I paid to trust your expertise!

I won’t give up, my body, my head is telling me to carry on and try to find another doctor a third opinion. Why is nobody telling me, yes you have a cyst, it might be the cause of your pain?

We were nearly at the end of our holidays, my husband whiles surfing the net came across the news that Dr. Feigenbaum, an American Neurosurgeon with extensive experience in treating Tarlov and meningeal cyst, in November would be in Cyprus at the AIMIS clinic.

I got in touch by e-mail with the AIMIS team. The response was very quick. The next day a member of Dr Feigenbaum team replied asking to fill in a couple of on-line forms and to upload my MRI scan cd.

I did everything they asked me to do and after about ten days I got the diagnosis. This is the e-mail I received: Dear Beathrice, Dr. Feigenbaum reviewed you're imaging and you are a good candidate for surgery. You have two right sided sacral cysts causing nerve root compression and one intra pelvic cyst on the left. The pelvic cyst is most likely not symptomatic as you do not have any left sided symptoms. The cysts explain your leg and bladder symptoms etc.

It was a Saturday evening when I got the e-mail. I started to cry uncontrollably and inside me I was screaming “see world these cysts are making me feel bad. I have told you so!”

Finally after three long years I have found to my own expenses what it is wrong with me. This could be the beginning of the end of this long journey.

All I wanted to do was to get all the information together, when, where and how much it will cost me. So after exchanging a lot of e-mails and Skype calls with Debbie West (Dr. Frank Feigenbaum's nurse and surgical assistant for the international division), Arthur Russell (Marketing & Patient Coordinator) and Stefanos Georgiou (Director, Finance), it did not take me long to make a decision. I agreed to be operated by Dr. Feigenbaum in Cyprus on the 21st of November 2013.

I didn’t see any other options. Stay with the pain and gradually get worst, end bed ridden or on a wheel chair for the rest of my life it is not how I saw my future.

The surgical procedure is going to cost 29500 euros (operation, two nights’ hospitalisation, seven days hotel and transport from/to airport) plus flights to Cyprus.

I am going to use all my savings to try improving my health. I say improve as I know that my sacral nerves could be permanently damaged leaving me with a degree of disability.

On the 21st of November 2013 I had my life changing operation, my two sacral cysts were successfully removed. When I woke up after the surgery, I knew that it went very well as all my aches were gone.

The day after the operation, Dr. Feigenbaum came in to my room and he helped me get out of bed and us walked together in the corridor. After three years of terrible pain, I felt so relieved.

I am happy again :-))))