What exactly does this operation involve?

Hi there! My name is Mary and I have had a very similar surgery. I was diagnosed with CED or PDD when I was 17 years old. I am now 39. I’ve been in pain most of my life but it got worse around the time I started my period at 11. It took from 11 years to 17 years to get a correct diagnosis.

My optic nerve problems started around 2001. At first I tried to ignore it since it was only in one eye. I started to notice that when I bent down my I would see black in one eye for about 20 seconds. At first it was just a nuisance. I made my rounds to the doctors in my area and no one knew what the problem was. One doctor, a brain surgeon in my area was convinced I needed a shunt. I was about to go through that surgery when I fell off a ladder and broke my leg, ending up in my local hospital. (I call it divine intervention!) This happened Oct 11th 2002, while in the hospital I told the doctors about the impending shunt surgery. They raised their eyebrows to that and immediately called in one of the brain surgeons from the hospital. It was his advice that I get a hold of the bone disease doctors and it was his professional opinion that in fact I did NOT need a shunt. A little later I found out that the Surgeon that wanted to put the shunt in was not a very good doctor and that it ended up being a good thing that I broke my leg because it prevented me from getting the shunt. I called my doctors up at Cedars Sinai, Dr. David Rimoin and Dr. Bill Wilcox up in Los Angeles that know all about CED and PDD and they pointed me to an eye specialist that directed it to Dr. Howard Kraus. Dr Kraus did a few tests and then told me in a straightforward way, “You have a tremendous pressure on your optic nerve. If this doesn’t get fixed soon, I believe you will be totally blind by Christmas! It was the end of August 2003. Dr. Kraus got on the phone at that moment and Called Dr. Keith Black’s office. I don’t know if you have heard of him. At the time, we had no idea who he was. We found out quickly that Dr. Black is “The Man!” He is a world-renowned brain surgeon that has operated on people that were considered “In-operable” He has a bunch of famous patients. So we had an appointment with Dr. Black who then put Dr. Danielpour on my case. Dr. Danielpour is one of Dr. Black’s colleague’s in the same office. Dr. Danielpour is the pediatric brain surgeon on staff at Cedars. I’ll never forget our first meeting with him! My husband and I get to his office and the first thing he says to me is,” How long has your mouth been drooping like that!” I was shocked! Hw had never seen me in his life and he is pointing out things I hadn’t even noticed! I told him I didn’t know that my mouth was drooping! As the appointment went on Dr. D told us there was no surgery in any of the medical books for what I needed. He said that he was going to have to make it up! That was scary! He said he had been in touch with fellow brain surgeons out of the state and they needed to go over some concerns. They basically had me sign a bunch of paperwork and told us they would be in touch. The next time we went up Dr. D said we have to move fast since they were worried there was going to be more damage. They told us that they had made up a surgery they were hoping was going to work. They had no percentages to give us on of I would live through it. We asked what would happen if I opted to not have the surgery. He said I would go blind and die eventually! So that wasn’t an option. So on September 10, 2003 I was wheeled in to have a radical experimental decompression brain surgery, the first of it’s kind! The best part was when I was being wheeled out of surgery into recovery and my husband bent down and whispered in my ear, “It’s me honey and you lived! Your all done with your surgery!” I knew I had lived at that point! The doctors were not very happy that my vision didn’t go back to normal. They were hoping it would be instant. It was about 8 weeks after my surgery and I was just starting to bend over a little bit. I leaned down to pick something up and my vision didn’t go out. I almost didn’t notice it because I was so used to turning black. So I did it again and thought to myself don’t freak out it’s the middle of the night! I didn’t want to tell my husband right away because I didn’t want him to get his hopes up that my sight was for sure restored for good! So, I waited a day or two to make sure it was real. It was! I told him and he was so happy! This surgery saved my life and these doctors are amazing. They are the ones that write the books on these diseases.

I feel so much for you right now. I know that when I was going through all the symptoms and daily life before the surgery, it could get pretty scary. You feel like there is no one out there that could possibly understand what you are going through. I know for myself I rely heavily on my faith.

I would love for you to write me back and I would be happy to pass on any information to you. I have phone numbers of all the doctor’s that have worked with me and I know they are going to want to know about this tribe! What are the symptoms you are going through now? I was not only loosing my sight but I was walking into things even though I knew they were there, I was dropping things all the time, things like that. I also had no peripheral vision. That is what I lost first. I have it back now and I know I have some damage. I know you can’t go almost 2 years with something like this and not have some damage. I am able to drive again with no problem. I hope some of this might help. There are many more details I left out and I would be happy to talk about it as much as you feel comfortable. Take it day by day and don’t feel guilty if your not having a good day. Do your best and that is good enough! Please feel free to e-mail me any time or leave a message on the website.
Hope this helps,
Mary
handyspice@cox.net