Hi cysters!! I have been on and off this site for over a year. I have gotten to know a lot of you and your struggles as they were struggles of my own. I was diganosed with a tarlov cyst in 9/07. I have lived with the pain and the bladder dysfunction and bowel dysfunction and numbness and weakness in the back of my left leg and foot. I have used crutches when I had to go somewhere but couldnt make my leg move. I have had to leave my job due to the pain and lack of performance of my own body. I have cried, I have whined, I have thrown things in anger, and I have even thought about the worst and most selfish act a person can commit, suicide.
> > Now I am here 5 days post-op in kansas city, where many of you have come looking for salvation and compassion. I have found it!
> > I had surgery on Tues March 3, 2009 at 10:39am with Dr. Frank Feigenbaum and his nurse Debbie West, RN at the research hospital in kansas city, MO. My surgery turned out a little different though, and I hope that that outcome wont hurt my standing in this group.
> > My surgery was finished in only 2 and a half hours instead of the three to four that they predicted. This was because they found instead of a typical tarlov cyst with the nerve through the middle they found a cousin to the tarlov called a "giant sacral meningeal diverticulum with spinal cord tethering". The difference is instead of the nerve running through the middle, it is the actual spinal cord. If you have a tarlov for many years, it can start to effect the spinal cord directly, but mainly it rubs on the bone and the nerve that is affected in the cyst causing the pain and the nerve issues. With the cousin (GSMD) it is directly dealing with the spinal cord already. It does come in contact with nerves also and does rub on them and the bone of that vertebrae. There really isnt a good way to tell the difference while diagnosing. But it is the exact same symptoms and usually the same outcome I am told by Dr. F. It unlike the TC is congenital so I had this from birth. But like the TC I probably activated it by some injury of some sort which has happened to a lot of you.
> > In the surgery he basically tied off the cyst and pulled out the spinal cord so they couldnt interact anymore, hopefully releaving the pain and nerve symptoms. So like the TC surgery he collapsed the cyst on itself. Unlike the TC surgery I didnt need the reabsorbable plate. Other than that recovery should be about the same the scar is the same and the relief of the symptoms should be the same. So I dont know if this relates enough to you? Or if people who have already had the surgery can relate to the post-op well? GSMD are very rare. Dr. F had operated on one before in his lifetime and didnt know what it was at that time. Later he researched it and only found 2 other cases in the world reported on and they were both in non-english text. So I'm not saying this could happen to you, but it happened to me! He did write an article on this but I've only been able to find it for money in its full form so far. When I go back for my follow-up I will ask him if he gives copies away to patients.
> > I arrived in kansas city on sunday. Had my pre-op appt with him on monday. Nothing big we just chatted and I updated my symptoms and he looked at my MRI again. Then tuesday was the big day! I arrived at 9am and registration took FOREVER! So Dr. F was waiting on me when I was taken back to be prepared. I chatted for a second with him then changed into my gown and got my IV. I met with the anesthesiologist and told him any probs with general I've had before. Then my mom and husband came back to give me a quick kiss and I was off!
> > I did wake up in quite a bit of pain, but was very well taken care of. Everyone I talked to said this surgery is kinda the worst when it comes to pain but they are prepared for that. I spent tuesday, wednesday, thursday, and half of friday in the hospital. Friday was the first day they would consider letting me go to the hotel (I live in detroit) but I was definatly up for it! So now Ive been in the hotel since friday afternoon. My mom went home so I have my very own bed to recover on. Right now is the first day I walked down to the lobby to get online. And last night was the first night I took a shower. You dont need your insicion covered after you leave the hospital and I thought my pants would bother the incision but has not at all. They want you able to walk a mile in a month. We'll see about that. Hehe
> > My bladder leakage has completly stopped as far as I can tell, and I was able to have a bowel movement on saturday! I would usually have so many problems with that that I would go two weeks before I would have to do a colon cleanse to even go once or twice then start the whole process over again. I had a slight numbness in my left big toe and under my foot but it is slowly coming back. I dont limp anymore like I used to. I think things are going really well. Better than expected. I have my follow up on wednesday this week and then will be officially released to fly home on thursday! I still have 8 weeks or so before life will start getting back to normal but I'm looking forward to it!!!
> > I hope any of this info or babbling helped anyone feel more at ease with the surgery or any part of this process. If anyone has questions please feel free to email me anytime. I feel for all of you and I hope that those of you who havent taken that leap of surgery for any reason do so very soon! Dr. Frank Feigenbaum is such a great and smart man. I trusted him with my life and I believe he gave it back to me. I wish you all the best!
> >
> > Lavonne :)
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