Another post from a forumn I belong to - this is the type of cyst Dr. F says I have

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 :)

Results of Sacral MRI (2nd MRI) & xrays

I finally got the radiologist' s report today on my sacral MRI. This sacral MRI says that it "reveals the presence of a 5.9 x 4.2 x 1.4 cm cyst within the sacrum. The inferior aspect of the sacrum is expanded by this cyst. Sacral nerve roots are not visualized within the cyst. The cephalad margin of the cyst extends to approx. S1. The cyst does not appear to extend through the sacral foramina.. The lesion is well defined. There is no evidence of abnormal enhancement. There is expansion of the sacrum, but there is no destruction of the sacrum. Everything else appears normal." The opinion is "A cyst is identified within the sacrum. The differential diagnosis includes perineural cyst, intradural or extradural arachnoid cyst."

The xrays on the lumbar spine says :AP, lateral, oblique, flexion/extension lateral and cone laterial views lumbosacral spine show no disc space narrowing, fracture or other defect. Opinion :"Negative"

I don't know understand completely what it all means, but I do know that I have a cyst on or in my spinal cord that is affecting the nerves by pressing on them. I sent all this information to my neurosurgeon in Kansas City, MO and I will now wait for his opinion on my 2nd MRI.

In the meantime, my pain is always present and I go through bouts of depression dealing with this. I try to be as normal as I can be, but I am having trouble getting the meds. I need to help with the pain in a timely manner. I may start my search for a new PCP soon.

Sacral MRI & flexition/extension xrays completed

I went to St. Anthony's and got my sacral MRI with and without contrast and my xrays done today. I got the CD and mailed to Dr. F. today, so now I wait some more. I will get the radiologist report in the next few days, so I will report the findings.

MRI & Xrays

Well, I have my MRI & xrays scheduled for the morning at St. Anthony's. They are going to do a pelvic MRI with attn. on the sacrum (with and without contrast)and flexation and extension xrays. I am so glad things are finally moving forward, as I feel as my life has been put on pause since May. My pain is pretty great lately, we had a party at our house on Saturday and I am still recovering from that, Sun and Mon were pretty bad. I stepped up my vicodin to every 5 hours, but it is making me nauseated. I will post more once I get results of new MRI.

I hate waiting

This waiting business is getting old. So, as you read from my last post, Dr. Feigenbaum ordered me to get a sacral MRI and flex/extension xrays. I have been on the phone with my Primary Care Physician on and off for 2 weeks now and they still haven't ordered the tests. At one point they told me that my doctor wanted to talk to Dr. Feigenbaum, so I made sure each doctor had each other's phone numbers and even told them the day that Dr. F. wasn't in surgery, so they could speak. I called today and it is still not set up. I am debating on switching PCP's, because the office staff at the one I go to is very inadequate. Some times when I call, they forward me 4 times before I get to the person that originally answered the call. They say they will call me back and they never do.

What stinks is that it will still be a while before I get the results of these tests and then I have to forward them to Dr. F., who is so busy, it will probably take another 6 weeks before he reviews them. I have heard from my message boards that Dr. F. is thinking about not accepting any new patients until he gets a handle on the patients he has. (Luckily this was the same day that Dr. F. called me). I am still in great pain every minute of every day, I am taking my meds, they help somewhat, this disease is not fun. I pray that no one I know ever gets it. I have met so many people through this disease and for that I am grateful, I don't know where I would be without the support that I receive from others that are suffering with TCs. So, I will continue to wait....

Dr. Fiegenbaum called!!!

Just when I thought he'd never call, he calls. Dr. Feigenbaum called me at 5:00 today. He said that yes, I do have a very large cyst that fills up the spinal canal. The spinal cord only has enough room for nerves, so the cyst is pushing on my nerves and eroding bone. He says that he can't completely say that my pain is from the cyst. He is ordering me to get flexition (sp?) and extention x-rays of my lumbar spine and a Sacral MRI. He says that I don't have a "true" tarlov cyst, but a cousin to the tarlov, called a meninegeal diverticulum. He also said that I have degenerative changes in my L5 - S1, but there doesn't look like any nerves are being pinched. He also said there is a little tethering of the spinal cord and my spinal cord ends at L1 or L2, which is shorter than most.

So, hopefully I will get my MRI & x-rays done soon, so I can send them to him to review and discuss.