Hi, COOZE
 

Hi, I am from NewYork. My mother is suffering from severe back, arm and neck pain for a 4 cm tarlov cyst. I want to know how the CT thing work? it's not a surgery right? Can you please tell me a little about it? thanks a lot

Hi Khan

The CT mylegogram is not surgery. Its basically where under CT guidance they insert a kneedle into the spine, draw out some CSF and insert in its place some dye. This dye then moves through the CSF and should show if there is any leaks and also the flow of fluid into the cyst, whether the cyst is wide necked or narrow necked.

From my research it isnt highly advisable to have the Fibrin Glue injection, as firstly it only provides temporary relief (6 months - 5 years) if any, and secondly, should in the future surgery be required it makes the surgery difficult. I have also read that the glue can stick to nerves in the cyst and cause damage to the nerves.

Keep me posted please on how things progress with her and if you have found a neurosurgeon who is aware of the issues TCs cause and would be willing to operate if necessary.

Good luck :)

11CM Tarlov
 

You need to contact Dr. Rudolph Schrot at UC Davis in Sacremnto California, he's the expert on the west coast. I had a 6cm removed now have 3 in sacrum and 9 thoracic. If you have any questions I can help been down this road. A cyst that large can leak and or burst. Not trying to scare you just want you to understand this is the largest I've ever heard of. I have been living Tarlov Cyst for 10 plus years since my first large one was found. Most neuro surgeons will not touch or operate. Dr. Schrot will.. Nancy

Thanks Nancy. Im in Ireland and am scheduled to meet with my potential surgeon on Tuesday next. I have met with Dr Donlin Long this past March and feel that I am safer to undertake the surgery at home of at all possible. Two main reasons being here I am covered by insurance where as to travel to the USA would be a cost my family could not afford without undertaking fundraising; Secondly, in respect of long term aftercare, should anything go wrong when I return home, no surgeon will interfere with the work of another so it would mean more cost of returning to the USA.

I would be grateful to hear of your outcome from your surgery however. Dr Schrot is a new name to me in my research. Do you have an underlying condition causing your TC or do you know why it happened? I have a very rare Connective Tissue Disorder which I believe is the cause of mine.

Thanks Rachel