My Journey with Pseudo Tumor Cerebri and Chiari Malformation. "By the way, its all in my Head! ": Psuedo Tumor Cerebri

My husband and I

Our 4 Children.

My name is Leslie Shelton. Yesterday after many hours of research and searching the internet for help on my condition, I stumble across what I thought was my best hope for a recovery. I found information on a place called the Chiari Institute in NY. I also came across a patient whom had been treated there by the name of Leslie Witty and her own personal blog about her experience, surgery, and recovery. I was left feeling hopeful for the first time in approximately 8 years that there was a cure and I could get back my quality of life, for myself, my children, and my husband. I contacted the Chiari Institute, they sent me via email my Welcome Packet to fill out. I was so excited. I contacted my husband right away to tell him of the good news and my hopes that my painful suffering with Psuedo Tumor Cerebri and Chiari would be cured. We were both so very hopeful.

Well let me go back a little as I have jumped ahead...........

In 2000, I was diagnosed with MS. I had been at work, and all of a sudden I got this pressure type of headache coming from the base of my skull and this burning sensation down my left side and a pins and needles feeling as if an electrical current was running through the left side of my body. Then it was as if someone had dimmed the lights in my vision very slowly. I was so frightened. I immediately called my husband to come get me as I though I was having a stroke of some kind. He did and we went to the local ER, in CA. I had a spinal tab done, which showed increased cranial pressure. I was referred to the Chief of Neurology. He ran many tests including a MRI and CT scan. Once all the tests were completed, he came to me and my husband with the diagnosis of MS (Multiple Schlerosis) and a small stroke. I was devasted. He then referred me to an optomologist for my left eye as I had not regained my full site back and things were getting worse for me. The Optomologist said the my optic nerve had increased pressure on it and he felt that I may not get my site back. For approx. 2 1/2 years I was treated for MS with many medications such as Neurotin, steroids, daily injections of Beta Ferons & Copaxon, and one of the last ones was Cytoxin, which is a type of oral chemotherapy, and which was the hardest on my body such as vomiting, fevers, infections, loss of hair, etc. In 2003 during the time of my treatment I had moved with my husband and 4 children to the state of WY, to be closer to their grandparents who could assist me with the childrens care, as I was now getting very sick from the medications, and much weaker. I was seen by a local WY neurologist, who took me off all of the medications and doubted the diagnosis of MS, as he stated I only met 2 out of 3 of the needed criteria. He then reviewed all my medical records, MRI's, CT's etc, and came to the conclusion that there was more to this and believed that I had been misdiagnosed. I was then sent to Salt Lake City to the Moran Eye Center where I saw a optoneurologist. I spent 2 days having tests run, and was finally told that they had good news and bad news. First the good news....it was confirmed that I had been misdiagnosed by the CA Chief of Neurology and that at this time I didn't have MS, nor had I had a stroke, but then the bad news........ I had a condition call Pseudo Tumor Cerebri. This is a condition that causes extreme painful headaches, weakness on one side, blindness, memory problems, increases spinal fluid on the brain. I was placed on a medication called Topomax. Over the next few years I had been on many medications to control the syptoms and pain. I was in and out of hospitals due to side effects and complications. And now to top it off I have Renal Tubal Acidosis, and cannot hold onto potassium, which has also cause some heart problems. How could all of this be getting so bad? My neurolgist, Cardiologist and Kidney Specialist have been trying to work together on my treament but we ran into a wall, as the medication I need for the Pseudo Tumor Cerebri (PTC) is trying to shut down my kidneys, and the meds I need for my Kidneys complicate my PTC and my heart. So it was finally decided that I no longer had a choice, and a Peritoneal Shunt we be tried to help relieve and regulate the Spinal Fluid Pressure on my brain as now the pressure was causing seizures. On May 31, 2007 I went in for this surgery. A shunt was placed in me by a local Neurosurgeon. I spent 5 days in the hospital due to complications with infection, low blood pressure, fevers etc. The day of my surgery I had a seizure prior to arriving at the hospital, and again right after my surgery after leaving recovery. To top it all off, I woke up during my surgery, but was paralyzed and couldn't tell anyone I was awake and in the worst pain and could feel them cutting into my spine and abdomen. I felt like i was chocking with the tube down my throat and could not open my eyes due to they had taped them shut. I was screaming for help yet no one heard me as they continued. After my surgery when I had my seizure, I was taken for a CT scan. My Neurosurgeon arrived in the CT room. He asked me to wiggle my toes in an aggitated voice (he had plans to leave after my surgery on a 6 week vacation that I had now complicated) I did, and he then grabbed my right lower calf with extreme pressure and started scolding me stating" I told you to wiggle your toes not your feet!" as he shock me and my body on the table by my leg. This caused my spinal incision to slam on the table, as well as much extreme pain in both my spinal incision and my abdomina incision (Both appoximately 5 inches) He continued to scold me as I begged for him to please stop, as he was hurting me. A Nurse/Radiology technoligist approached him and got him to release me and leave the room. As he left he took his fingernail and scratched into the bottom of my foot, breaking the skin slightly. The Nurse appologized to me, and said the CT would be quick and they would get me to my room. Then upon my return I reported the incident to Hospital Staff, my husband, Social Services, etc. I requested that they keep this Neurosurgeon away from me and my care. They said the would. The following morning I was released and dumped the front door of the hospital with a fever, infection, vomiting, and heart palpitations. They stated that this same doctor had ordered my release. So they parked my wheelchair with me in it, along with the urine catheter/bag that I still had outside their front doors. I started vomiting, then my husband pulled up in the car to get me. He shouted for help, and was told by the CNA who brought me down that I had been released and if he needed help to take me to the ER. He did, and I had an episode of Cardio Syncope causing me to black out due to low blood pressure and irregular heart rate. When I came to the ER doc said that I was going back to my room as I was very ill and should not have been released. He had to argue with the hospital staff for me to return. So he had a approx. 260 lbs male ER nurse take me back to my room. I was refused treatment initially upon my return, and the ER Nurse had to place an IV in me. He contacted my Neurologist as staff refused treatment as there were no orders. In fact because of this one nurse came in and tossed a new Catheter bag at me and told me to change my own bag and empty my own Urine. Finally my Neurologist arrived. She made orders, appologized for how the staff was treating me and left me to rest. The following morning she came to check in with me. I begged to be released, due to the hostile treatment I had been currently been receiving, and the fact that my husband had to play guard dog to keep them from harrassing me. For an example they would make me sit in a chair for up to 4 hours, despite that I has a spinal headache to beat all from the lack of spinal fluid, was vomiting, and the spinal surgery. My doctors had only left orders for me to get up every 3-4 hours to move around for a few minutes to avoid pneumonia. She was shocked when she heard what they had been doing. She agreed to release me however as long as I had plenty of help. I did through my family, our church, etc. Approximately 1 week later I was readmitted to the hospital by ambulance, due to I had a severe infection, and was very septic. I had emergency surgery to remove the shunt that had been placed. it has been discovered through my medical records that a "wasted" Catheter to the shunt had been used. This meaning it had been contaminated prior to being placed in me. It has taken me several months to recover from this surgery and infection. On top of it my abdominal surgery/scar was no deformed leaving a hole into my abdomen, and to tight of stiching into the muscle from the first surgery. Doctors say it will need plastic surgery to fix, as well as the Neurosurgeon who had assaulted me left a hand print bruise on my lower calf. Since all of this I am now taking 33 pills a day just to get by. I was also told by my Neurologist here in Nov. 2007 that it is believed that I have Chiari, but officially can't be diagnosed with it because I am approx. 1 mm short of the herniation on my cerebral tonsisils. (I am just over 4mm with the herniation) and there is a 5mm rule. The Chiari Institute doesn't agree with this rule. They treat those under 5mm.

So back to the beginning of my post.........

I had just filled out all of the Welcome packet in order to send it in to the Chiari Institute. Yesterday I had left a message for the Billing Dept. to verify that the indeed would accept my Wy Medicaid Insurance, as this is the only insurance I have due to I am now on SSDI because of my condition. Today I received the reply. They do take state mediacaid but only for the State of NY. I am devasted to think that my only hope had just been taken away from me. no more hope for quality of life for my family or I. I am a Christian and believe that God has a plan for each and everyone of us, yet I really don't understand what his plan is for me. Am I to suffer by being an example of how devasting these diseases are? I pray and pray for him to help me get my miracle.....A Cure! Once againit seems as if finances, the type of insurance you have, etc rule whether you will be cured or will suffer. Any hope?

Here are some of my pics of my ordeal. Sorry some are graphic.