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My Number One Supporter!

Wednesday, December 1, 2010

I know what it is, but what is it?

I can find all kinds of information about what a tarlov cyst is, but not  lot about the specifics of it or where it came from. Here are my theories thus far:
  • I was born premature..could it be a birth defect that has been laying in wait?
  • I was a big, badass drinking fish with horrible eating habits....did I overload my system with toxins and abnormal cells so much that it decided to drop some off at the base of my spine and form a cyst?
  • Did I stretch my nerve out some how and cause it to balloon up on its own?
  • I had farenheight seizures as a child and when I would have an episode they would pull fluid off my spine with a giant syringe... did this upset the flow and cause the cyst to form?
I really have no idea and the more I look the less I know. I came across this really good definition on another blog called My Tarlov Cyst Journey that read something like this:

"It is good to hear from you and regarding the cysts you referred to - they were emptied of spinal fluid and the small orifice that the spinal fluid was leaking through into each cyst from my spine were plugged with thin layers of fat and tissue glue. Layer upon layer which formed a lamination that is very strong and stops the spinal fluid from filling the sheath that protects the nerve. Each nerve has a protective sheath that sticks tightly to the nerve except when for some reason it loosens on the nerve near the spine the spinal fluid then flows under the sheath around the nerve and forms a fluid filled balloon or sack outside the spine around the nerve. When enough fluid escapes the spine and the sheath is bulged larger and larger they are called Tarlov Cysts. The pressure from the spinal fluid trapped inside the nerve sheath becomes so great that it begins to crush the nerve which as we know from experience causes increasing pain and then loss of bodily functions that are controlled by that particular nerve.The goal of the surgeons is to drain the fluid sacks called Tarlov Cysts and then plug the leaking entrance of the spinal fluid which repeatedly accumulates as we pick up heavy objects or become very stressed. The nerve sheath itself has small very important nerves embedded in their thin membranes which the Neurosurgeons have to be extremely careful when they make their incision to drain the fluid and then insert the the thin layers of fat taken from the incision area near our skin. It is my view that those contemplating intervention must be very careful to choose a neurosurgeon with years of experience and a good success rate. It has been my observation and experience that we look for a surgeon that practices very close to our home for our convenience but that should not be the top priority in my view. However each of us has to do our own research as you are doing and weigh all the information and make our decision based on what you believe is proper for you since the choice you make and the result you obtain is what you will ultimately have to live with. I appreciate your patients and hope this has been helpful. May the Lord grant you grace, wisdom, good judgment, and resolution. Blessings Best RegardsSincerly.... ......... ......... ....Walt "

So, this leads me to believe that, obviously, my nerve sheath has been stretched out of place. But, how and why? I can't seem to find any information on how one's sheath goes from skinny jean style to relaxed fit! I read somewhere that your nerves heal at a rate of 1 cm per month, does this mean if I stick with my clean diet that I can heal my nerves? Plus, if it does heal them how the hell am I going to get the spinal fluid out of the cyst so that it too can be healed? Very confusing!

I have thought about going to a neurosurgeon but I already know what he/she will say 'Take pain pills and have surgery', essentially the same treatment plan of every thing else. Which I may have to have surgery, but I am damn sure going to put up a fight first for my body's sake. I have heard so many people talk about how having any kind of back surgery runined their lives....do I really want to trade in one problem for another?

Right now, my gut is telling me that this diet is the answer, as it has been making me feel back to normal and the swelling almost completely goes away...my confusion causes an issue only because I would like to know how everything works so that I can understand what is happening. Is the diet causing it to simply be dormant, waiting the right time to flare back up? Am I actually healing it...if that is possible? I read on TarlovTalk that this one girl had her cyst aspirated and then injected with fibrin glue and then 2 years later it was gone...her body had absorbed it. Could my body absorb it the way it is? Who do you ask these questions to when no neurosurgeon is going to acknowledge a natural way of treating anything outside of a headache?

What's a girl to do?

1 comment:

  1. The Dr I saw believes I have problems developing my connective tissues. I was born without the ability to produce enough testosterone, and that has caused numerous problems throughout my life. I had a lung defect at 17, weakness always, other assorted smaller issues, and now Tarlov Cysts.
    I have rejected the surgery he recommended, because I shudder at the though of losing all bowel and bladder control, I feel with my tissue problem, it will just come back higher up, and I can't afford it.
    I am going back to considering the fibrin glue treatment, and still looking for other options.
    Look at your history for anything that suggests a pattern.

    ReplyDelete

Thanks for your comment! With so little known about this disease it is up to us to become the authority and advocate for better options!