The Much Anticipated Consultation

I finally got to see Dr. Feigenbaum, the world’s leading Neurosurgeon who treats Symptomatic Tarlov Cyst Disease! I was so excited and running on endorphins that my pain level was low but my blood pressure was through the freaking roof! After all, I had researched the heck out of this guy and probably watched his videos a million times. I consider myself very fortunate to have been able to see him. Many don’t have that luxury.

To say my consultation went well is an understatement. I got an extremely good vibe from doctor Feigenbaum and his staff. I was so pleased to finally see the faces of several of his office staff I had spoken to and emailed. They were all so sweet.

At first, Peg came in and asked me to go through a list of my symptoms. I gave her my MRIs, the reports and some papers I had typed up for Dr. F with my timeline of symptoms. Shortly after, Dr. Feigenbaum entered and honestly the first few minutes are a blur in my head. I might has well have been meeting Brad Pitt or James Franco for all that matter. The man is a super-star celeb in my head!

The first question he asked was “So, who found your Tarlov Cysts?” He asked me several questions about my symptoms and did a physical exam. He asked me to stand on my tiptoes, one foot at a time. When I did, my legs shook uncontrollably (and it wasn’t because I was excited.) Michael said my right one was shaking much more than my left. Dr. F explained what Tarlov Cyst Disease was and how it affected patients. I had researched that so much, that inside I was saying, “Ok, ok! I know all of this. Let’s hurry up and get to the good part! My MRIs!” Next, he took us into the hallway to look at them. I had lumbar and pelvic (with and without contrast) MRIs. I was so excited to finally have someone to show me in detail where they were and how big they were. They were on my S1/S2 sacrum levels. Two were at least over 1.5 cm but not too much over. You could also see on the MRI where two more smaller ones were forming in between them. He told me that one of the large ones is on the right side, which explains why my symptoms are worse on the right. (Remember my right leg was shaking the worst?) But, my symptoms on the left side can also be explained by the location of the others. I asked if I only had four and he said it appears that way from the MRI, but we wouldn’t really know for sure until he went in there during surgery. Sometimes they hide in clusters. The cysts have caused erosion and deterioration of my sacral spine.

We went back into the room and he told me that I am a candidate for surgery. (Meanwhile, I was screaming inside like a Beadle-maniac.) He explained the details of the surgical procedure. You can't remove the cysts, because they ARE your nerve roots. It is done through minimally invasive surgery through around a 2 inch incision. First, he would remove part of my sacrum. Then, he would go in, and meticulously treat each cyst, even the little ones. He would open up the cyst (nerve root filled with cerebral spinal fluid), plug the hole where the CSF was entering with some of the fat in my back, drain the cyst, suture it, then wrap it with bovine pericardium so that it could not come back. Keep in mind people, he’s doing this all microscopically. Imagine how tiny a normal nerve is – around 1mm. Lastly, he would put a plate over my sacrum that would gradually dissolve over a year and create a scar tissue that would protect that area. During the whole procedure, a neurologist would be in the room performing an on-going EMG monitoring my nerves. (Glad I’ll be out for that. Been there, done that. It was definitely not something I wish to repeat.) Shrinking the cysts gives the surrounding nerves room to regrow and heal.  The surgery could take anywhere from 2-3 hours depending on how many cysts he finds. Sounds good to me! I’m all about some bovine pericardium! I love cows! Let’s do it!