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Old 08-22-2015, 05:03 PM
yrodarte yrodarte is offline
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Join Date: Aug 2015
Posts: 2
8 yr Member
yrodarte yrodarte is offline
New Member
 
Join Date: Aug 2015
Posts: 2
8 yr Member
Default TC recent diagnose

Hello Gabrielle,

Your post has good surgeon information. Thanks for posting.

I have been just diagnosed with TC and I am trying to get as much information as I can. I have not seem the neurologist to check my treatment options as I just got an MRI yesterday. He emailed the results at my request. My symptoms are the common ones of the disease but only flare up when I exercise. I am pretty scared this disease will get worse and disable me. I wonder if your symptoms were consistent and daily from the start? and if you got surgery and what are the results? I guess I am curious what is the progression of this disease but I want to hear it from people not literature (as it seems very general).

Yuliana
Portland, OR




Quote:
Originally Posted by gyasenchak View Post
Hi Annette and Barb,

I am 40 years old and was diagnosed in April with a large Tarlov Cyst that starts at my tailbone and has grown through the Sacral bone. I have been to 2 surgeons that will not touch this but both have instructed me to seek a surgeon that will. I went to a surgeon in Seattle last week and was told it was between 3 and 4cm in size (the biggest one they have seen yet). I was also told that I was a candidate for surgery but the risks involved are very scary. Basically, the decision is up to me and there are no guarantees. The surgeon's name is John K. Hsiang, MD, PhD and was recommended by another surgeon at Stanford. He's done 10 surgeries in 2 years and has a pretty good success rate but was very honest and told me that I could be that one that doesn't work out too well. Appreciated the honesty but not really what I wanted to hear. I am still going to check out Dr. Donlin Long at Johns Hopkins who is supposed to be the best. There is also another doctor in Kansas City named Dr. Frank Feigenbaum...both of them are my next step.

Personally, I am still able to work but the pain is getting increasing difficult to deal with. I have burning in my tailbone and sciatic nerve pain down both legs as my cysts is located in the middle of the sacram. I have been seeing a pain management specialist here in Portland, OR at OHSU. I am on 200mg of Tramadol daily and so far it has allowed me to keep working but that's about it. I am unable to exercise or really do anything other than sit or lay down.

I am continuing my search for the right surgeon as letting this grow any larger could cause permanent nerve damage to the bowl and/or bladder. As I find more information I will post the outcome.

If anyone out there has had the surgery, I would really like to hear what procedure was done and if it worked. According to the surgeon I saw last week, there is not much info and they are just now collecting data. Long term results of surgery are not available.

My thoughts are with you both and know you're not alone. From what I've been reading there are alot of us out there seeking answers.

Gabrielle
Portland, OR
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