Wow sorry to hear this. Well Ive had my CT Myelogram and it showed that a blood patch I had done for my CSF leaks in March has sealed the neck of the cyst. I am also told I have another cyst which is connected to the CSF.

They are going to aspirate the large, closed cyst.

What kind of pain are you experiencing? Did you have pain prior to the aspiration? Do they know what is causing the pain??

I havent got a date for the aspiration yet but am hoping it will be soon.

Looking forward to your reply.

Cheers
Rachel

Hi all

Just to let you know I had my cyst aspirated 2 days ago and so far all seems ok. They drained 1200ml of fluid from the cyst! Ive a bit of a headache but not as bad as Ive had before from leaks. It appears that quite a few symptoms have improved, primarily my ability to pass water, and back pain. I wont be able to appreciate full benefits until Im back moving properly but so far all looks good

I had pain before surgery, but ever since the surgery my pain is much worse. I have severe pain in lower back, into buttocks and down both legs. I can't walk even the length of a parking lot. Johns Hopkins has been very unresponsive. They let weeks go by before getting back to you. It's been over 3 months.

Hi all,

Unfortunately my aspiration didnt last. I had about 24hrs of noticable relief before feeling awful for a number of weeks, then having bladder issues again and following a CT scan discovered that the cyst had grown again but this time is bigger than before.

I am now awaiting a second aspiration and the neurosurgeon has instructed that an extra amount of fibrin is injected to try and help the cyst seal. If it is unsuccessful again Im in trouble as the surgeon has expressed his reservations to doing the surgery.

If anyone knows any surgeons confident and with a reasonable success rate in operating on TCs I would be very grateful to have their names. I need to be prepared in case this aspiration isnt successful. Locality of the surgeon is not an issue, we will deal with that once we know that someone would be willing to operate.

Thanks in advance.

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