your time,
enegry and any effort into helping me. I am 501(c)Hi, I'm Royalyn, age 39--single mom with 3 wonderful boys---14--10---& 2 yrs old. I lived silently all my life with almost all the symptoms so many have already discussed.
When I was young, I complained so much of headaches and naseau that my parents started to ignore me. I remember my mother finally telling me when I was about 9 yrs old that I couldn't miss any more school and she didn't want to hear any more of my complaints unless I had a fever of 101 degrees.
So I learned to shut up and to just deal with my world. I remember volunteering to take naps (and still do) while my friends or brothers were playing. I was also diagnosed with a rare prism within my eyesight--and even with bifocals at age 13, never have been able to focus on anything.
I have a photographic memory which has been my only saving grace to my short term memory problems. As long as something is written down I can pretty much remember anything. My vision has deteriorated though as that was one contributing factor getting me into the Emergency Room.
So reading the written word has been one of my latest challenges. I have always been told I'm a very emotional person---I cry very easily and get mad just as fast. My boys have been suffering the most with this and I will forever feel guilty and hopeless in this regard. I have went thru marriage counseling (which the marriage failed--not the counseling)---I have attended Indian drumming cirlces and hypnosis sessions-----meditation has proven an oaisis for me !!!! Group meditation like in the drumming circles is the easiest and most powerful !!!!
The Week Leading Up to the Big Day--
I woke up one day to my left side numb from my head to my toes--headache had been piercing something fierce for days before that. A trip to the doctor resulted in going to the pharmacy for sinus headache medicine. Every day after that turned into a nightmare. My thoughts were scattered ---I was afraid to go outside because it felt like I was "losing it".
Nearest description I could come up with is objects looked like things do when there is an eclipse outside. My head felt detached yet very heavy. The breaking point was driving my son home from a party on a straight rode that I have travelled down a hundred times and I got lost.
The next day (5 days from my orginal doctor's appt), I drove the baby to the sitter while my other boys were at school. There were traffic cones in the middle of an intersection. Again I felt weird and suddenly couldn't figure out how to drive around them. Finally, got behind another car and followed it. Later at the doctor's office my favorite doc was working that day--she took one look at me and new something was wrong. By that point, my speech was slurred and the right side of my mouth drooped. Thirty minutes later I was in the ER.
The ER and months in the hospital--
Just like so many stories voiced already, the doctors were baffled.
Two or three doctors couldn't figure out what to do with me.
They all saw what was on the CT Scan but said I shouldn't be feeling like I did. 12 1/2 hours later I had a room and by then found out I couldn't lift my right leg. Later on I learned my insurance company told Dr. Paul Abou to release me, but he fought and fought with them until he got his way. THANK YOU, DR ABOU !!!
An MRI with contrast didn't show any different. I kept asking the doc to tell me where my cyst was located but he kept saying it wasn't important. He knew I was all alone and later I understood why he chose not to say anything at first. At some point I met my nuerosurgeon, Dr. Hertzel Soumekh, and nuerologist, Dr. Erik Gao.
After determining that I didn't have a stroke, I was told I would need a shunt put in my head. It was at that time Dr. Abbou finally sat down on my bed and told me exactly what was going on. I have the largest cyst that my nuerosurgeon has ever seen. (He also operates on babies at Children's Hospital in San Diego !!!)
It reaches (from the middle) 2 inches to my left side---the entire front to back part of my skull---penetrates the 2nd layer of the brain (whatever that is called) --then traveles all the way down to my right ear. I asked Dr. Soumekh why at age 39 was I suddenly deteriorating and not before then. His explanation was to guess that the cyst probably was draining by itself naturally and its "hole" must have plugged up.
My first surgery was on Febuary 16, 2004. Two days before my son's second birthday. I lost more short term memory, my leg was still useless. and I couldn't hardly hold a pencil. Besides my drooping mouth, I now could not raise my left eyelid. I think it's because of one of the instruments used to hold my head in place during the operation because I have this permenant indentation on my head. My temple absolutely kills now also.
The surgeon said that yes, sometimes this happens...I love him but would have liked to have known this ahead of time...(The paralysis has since gone away however!!!)
My insurance company refused to pay for rehabilation, so I was sent home with a walker and therapists coming to visit me every day. Thru their perservance, I returned back to the hospital a week later and admitted to the rehabilitation unit. The staff encouraged me and I could feel myself grow stronger every day. Then one day I turned to look at my physical therapist and saw two of her ! I started to cry----Dr Soumekh was called immediately.
He could tell without the MRI that the pump located in the shunt wasn't working just by pressing on my head The new MRI confirmed what he already knew. It was two more days of vomitting and headsplitting until my 2nd surgery. I had to learn how to walk all over again because my left side went weak with that surgery. My entire hospital stay was almost 3 months. I've been home for 2 months and have the utmost thankfulness to shower by myself !!!
Every day I wonder if this is the day I'm going back in. At this point I can't tell which of my many symptoms are from the surgeries and which are from the cyst. I guess time will tell----hopefully, that is, if someone really has any answers by then !!!
Evidentally the shunt is working. The naseau has pretty much subsided but the headaches are still abundant and now I have sharp pains in my head and it is very hard to watch all the flashy movement on TV that is so popular these days ( Wouldn't it be nice if WE could prove WE are being discriminated against and someone would actually listen ??? ) I pray for the babies also and encourage anyone who can to come to San Diego. The hands of Dr. Soumekh are truly blessed (his bedside manner are another thing--but personally I would much rather deal with someone intelligent than cozy when it comes to my brain !!) THANK YOU AGAIN for this foundation/website.
For the first time my life makes since and I don't need to be quiet anymore !!!!
