Dr. Feigenbaum Explains Risks and Recovery from Surgery

Dr. Feigenbaum continued by explaining the risks of the surgery. They include CSF leakage, permanently damaging surrounding nerves resulting in permanent loss of bladder and bowel functions, permanent numbness, and then the rest of the usual risks associated with any surgery. You know, bleeding, complications from anesthesia, death, yadda yadda. There is no risk for paralysis.  Since I haven’t had severe symptoms, such as complete loss of bladder and bowel control, BEFORE surgery, the odds are in my favor that I won’t afterwards, but there are no guarantees.  His overall percentage of complications of all of the surgeries he has performed is 5%. I’m not sure exactly how many surgeries he has performed but It’s somewhere in the high 1300s – 1400s. That surpasses any other neurosurgeon’s record like a rocket ship passing a sailboat, if you get my drift. For me, the benefits far outweigh the risk. If I do not get surgical treatment, my pain and other conditions will not improve and my overall quality of life will deteriorate over time resulting in irreversible damage. I am 37 years old with two small happy minions and we have many fun-filled adventures left ahead in life.

I asked about recovery time. The surgery is NOT an instant fix.  Since everyone is different, there is no way to predict how long it will take to recover. They do not have the technology to determine pre-surgery if the nerves have already been permanently damaged and are irreparable. Nerves can take anywhere from 6 months to 2 years to heal. It could be up to two years before we see the final results. He said that, because I have not had prolonged nerved damage and am relatively young, those go in my favor towards a possible shorter recovery period. Nearly everyone goes through a 6-month period of worsening pain and weakness, affecting your ability to walk. It can come and go as the nerves go through the healing process and some sort of “waking up.”

He asked if I had any questions, at which point I whipped out my giant typed up list. He had answered most of them already but patiently went through each one of them with me. I in no way felt rushed. He took a few minutes to get to know my husband and me and I even got to speak some Spanish with him. (I’m sure at that point he realized he had a total spaz on his hands.)

I told Dr. Feigenbaum that I was a member of a TC Disease Facebook group with over 1400 members and asked him if he had any idea how famous he is. He laughed, shrugged his shoulders and said, “I don’t know. My wife keeps me in pretty good check at home.” The common stereotype of neurosurgeons is that they are arrogant. I mean, they are all freaking geniuses right? For all that Dr. F has accomplished, he is by no means arrogant. He was very approachable, humble, and compassionate. If you met him on the street, he’d strike up a conversation with you. (I’m pretty sure at some point his fame is going to catch up with him and he will need a body guard to protect him from the paparazzi.) You can tell that he truly cares about his patients and has a genuine passion for helping TC patients. I’m sure if I could read auras, his color would be whatever the nicest and most genuine one is. He flies to Cyprus several times a year to treat those who can’t travel to the U.S. or for those who cannot afford surgery in the U.S. (It is much cheaper there). He travels back and forth from Kansas City and Dallas performing surgeries for patients. So, for all of you skeptics out there with conspiracy theories that he is just out to make a good buck…No. He is the real deal. No doubt about it.

Since I had him all to myself, I decided to use the opportunity to ask some questions about his research progress. I asked him when he was going to publish his statistics from his first 800 patients. He said currently, they are working with a new data program but hope to have it out soon. You know me. Little miss details. “When is soon? Like the next few months? This year? Two years from now?”  He looked at Katie and laughed, “Well I certainly hope within the year. But you never know once you submit it if the journal will accept it or want you to edit anything or make revisions.” I asked him if he knew which journal he would publish it in because I couldn’t wait to get my hands on it and give it to every single doctor I know! They have thought about a neurosurgical or orthopedic journal, but really want it to be released in a journal that will reach a larger audience in the medical field.
“Something BIG.”  I’m sure he could tell I was very excited about this because I was literally sitting on the edge of my tush cush. I told him how important spreading awareness was to me and that I had joined the foundation, made a donation and am now going to be a huge advocate for this disease.

He was surprised to find that I lived in the same town as Reta, the President of the TC Foundation. He said he had just spoken to her a few days prior. “I did too! I’m supposed to meet her sometime for lunch early November!” (I don’t care if I have to have a piggy back ride and will hurt for a week. I can’t wait to meet the woman.) He looked at Katie and laughed. What are the odds, right? Speaking of odds, I told him I had connected with several of his former patients and have heard nothing but good things. I told him about my random connection with Anne and he was amazed. He wanted to know their names.

So, what happens next? It will take 2-3 weeks to get the paperwork together to file to insurance for surgery. From there, it could take up to a month or longer for the insurance panel to review it and decide whether to cover it or not. If they deny it, they have to go through the appeal process, which takes even longer. After insurance approves the surgery, they will schedule a date for me. As of now, there are 23 patients ahead of me. So, it will probably be at least January before I can have surgery. That is three months away.

They are used to seeing patients who have lost their normal lives, many of whom are women in their 30s-40s and have young children just like myself.  I had a conversation with his nurse Katie about how anxious I was to have surgery because I can’t take care of my 3 year old and I would rather be hurting knowing I am getting better than getting worse. I can’t describe the look on her face. It was filled with compassion and sincerity.

At the end of my consultation, he his nurse Katie even gave me a hug. I told him I couldn’t thank him enough and he laughed and said, “Well, you might want to wait until after surgery to thank me. You might not feel that way then!” I left satisfied, optimistic and like I was in good hands.

Dr. Frank Feigenbaum, Little ole' me, Katie