My days with my chronic pain

I am a mother of 4 beautiful children ages 16, 15, 11, and 7. I have a wonderful husband and just a great family. And up until a 7 years ago I had more than any one person should ever be blessed with.
I had a full time job that I thoroughly enjoyed, my husband worked full time and we were able to spend quality time with our children. Doing all the things that we believed a "family" should do. Tried raising our children with morals, with respect for themselves and others and believing in God.
You see, I suffer from Pseudo Tumor Cerebri, and possible Chiari malformation, yet my Neurologist won't officially diagnose me as I don't meet her known criteria. She is not updated on the current criteria to which I do qualify. She is a wonderful doctor, who is compassionate, and very caring just not up to date on the new Chiari information or its new criteria for diagnoses. But I can't blame her as she is a very busy woman, and we live in a rural community. She assisted me the best that she could/can and tried to help me get some relief from my pain by having a shunt placed in me. This surgery failed. The surgery left me deformed, emotionally drained, physically sick due to the infection and the carelessness of the Neurosurgeon. The surgery left me pain that has me in tears for many hours of each and every 24 hour day. Between the surgery and my chronic illnesses it has taken away my ability to perform a part time job much less a full time job. It has left my once stable family torn in more pieces than I can count.
You see, my children now have to worry about their mother. Something that they should never, ever have to do. They have had to grow up faster than is fair to any child because they have to make up for the everyday things that I am not able to do for them anymore. My 7 year old has no idea what "real fun" is. His idea of fun is sitting at home playing legos, or sitting by my side and telling me how sad he is that I am sick and can't play with him. My husband has had to work harder than ever to make up for the income that I once contributed to the family, so that we can afford the bare medical treatment - medications, drs, therapists, specialists - Plus he has to try and maintain the stability that we once had as a family unit.
It is so hard to wake up each morning in so much pain that the tears roll down my face uncontrollably while at the same time trying to be a positive roll model for my children and reassure them that I am ok. When I know I am certainly anything but ok. It is so hard to watch my husband struggle with his full time job that has no benefits and maintain a household, cook dinner, help the children with their homework, and ensure that they are able to do some of the things that all teenagers and young children should be able to enjoy.
So you see, chronic pain takes so much away from a person. I am no longer a person but rather a burden to all those around us. I have become isolated from society because I and others like me are no longer able to function. I have become depressed because I suffer horrendous amounts of pain day in and day out. I am not alone, as there are others like me. Plus we see our families being torn apart right before our eyes and there is not a darn thing we can do about it. It is so hard to find a doctor that is willing to treat those of $us, and when we do they are not able to provide adequate relief sometimes due to the lack of information on the illness and its treatment. Most doctors know their hands are tied so they turn us away. Society in general turns us away. Every door is closed to those of us that suffer chronic pain from these illnesses. That is humiliating, it takes away a person's self esteem, takes away all that we fought so hard to become. Pain has taken away everything about me and others like me.
As a chronic painer I have had to fight for everything. I fight to get out of bed each and every day, I try so hard to fight back the tears and when I can't it is so frustrating. I have to fight to be seen by a doctor that is willing to treat and cure my pain due to not having the right type of insurance. I have had to fight to get any relief and the relief that is offered leaves the mind in a mess, or doesn't touch the pain enough so that I can function. My first medication was a drug called Neurontin, this drug caused me to forget who I was, where I lived, and I even forgot that I was responsible for our children. Do you have any idea how horrible I felt not only as a mother but as a human being?
If taking a medication that contains an opiod/pain killer is the only way that allows me to wake up in the morning and kiss my children good bye as they head out the door for school than I don't want it? If taking an opiod/pain killer is the only way that allows me to walk outside on a sunny day, then why bother. If taking an opiod/pain killer is my only means that I might actually smile or laugh with my family or friends- then forget it? I don't want to have to rely on an opiod/painkillers to have my quality of life back when I know there is a cure. These opiods/pain killers are just a band-aid.
Every day that I wake up the very first thought is not what am I going to do today, its not what clothes should I wear, its not whether or not my socks match my pants, its not any of these things that most people think of. My first thought each and every morning is whether or not today is going to be the day that throws me over the edge, or what is the most effective way to end all this pain...yes, suicide is the first thing on my mind every day. Its the last thing on my mind at the end of each day. And its there on my mind right along with the pain every minute of every day. I have to pray every night and ask God for the strength to make it through another day and to thank him for getting me through the day that is at end.
I'm not asking for money, I'm not asking for special treatment, I'm not asking for a new house or a fancy car. All I ask is for adequate relief. Enough relief to allow me to have a "good" day. A "good" day being a day that I can get up without tears, kiss & hug my family good bye as they venture out for their day, straighten up my house, do a load of laundry, make dinner, help my children with their homework, talk to them about their day, and to let them know that they are the most important thing in the world to me. My dream, my goal in life at this point, is to reassure my children that whatever troubles life throws at them, I will always be there for them no matter what. Yet this to for me is a struggle.
The past 7 years I have not lived, I have suffered with each year getting worse. I may not be dead, but is this really any kind of life? I don't understand why I am not worthy of proper medical treatment, treatment that involves adequate relief. I have worked, I pay taxes, I am a proud American, I have respected others, I have done so many right things in my life to help others. I am the reason that my husband went into his own depression and chose to look to another for his own comfort. He says that he is sorry for straying and will never again look to another, but should he be sorry when I am to blame? My family falling apart is not because he haas not tried, but because I am unable to when I am consumed by my pain. The pain that I suffer is not my fault, it is not something that I did to myself deliberately, it is not my fault and it is not my family's fault. Why are we left to suffer like this? Why do I deserve less than some sense of normalcy in my life and the lives of my family?
Lately, I have been taking long walks on cyber-beaches, be them in Cabo San Lucas, with waves crashing against the rocks, or long stretches of white sand in Maui where I can hear the wind rushing through my ears, gulping in the salty hungrily, hoping each breath will renew and restore my weary body.
My problems certainly are no more, or no less, important than anyone else’s. I can only measure them against myself; against the problems I have solved, the ones laying in wait, and the ones just around the corner, beckoning me and challenging me to conquer them, one by one. Whole or broken, the seashells that crunch beneath my feet tell me I’ve unraveled yet another problem which only a moment, hours or days before felt insurmountable.
I never cease to be amazed and stunned at the amount or ferociousness of the issues for which I am confronted; daily fights for financial assistance, medicinal help (promised, yet not delivered) and all else that awaits me and others in chronic, intractable pain. While it is true that everyone, not just sick people, must deal with the gnats in the air and the bumps in the road, it is far different when tackling those issues through the veil of pain.
Which brings me back to the cyber-beach and all it’s simplicity. I can feel the sand between my toes, warm and sun soaked, stretched out in front of me for mile after eye-squinting mile. It comforts me, that beach. The hot sun pours down on my beaten body, offering a sort of healing. But the Earth can’t heal me this time around, good as the sun feels. It can only offer me the sense of healing, which will have to be enough for now. I live being afraid to wake up each day.
My visits lately to doctors and to the ER, have been useless. No one undertands the pain I am in, nor wants to really listen. They hear only what they want to. I am on disability now, with State paid insurance. I do not qualify for medicare until 2009, so in the meantime I am treated as a second class person because of the insurance I do have. I don't go to the doctors looking for pain meds, nor am I addicted to them, yet when they look at my history of my illnesses, and my list of the 33 pills I take daily, they treat me as if I was drug seeking. I am treated by ER docs as a nuisance, and a waste of time anymore. Only 2 of the 33 pills are for pain, which I do not take regularly as prescribed, as I have the fear of addiction, and don't want to be costantly doped up. The rest are to help my kidneys from failing, my heart, etc. I ask the doctors to help me seek out why I am in so much pain and to help me get the treatment and cure, yet they turn me away. This only makes things worse. I am so hopeless.

Are the docs joking?

Yesterday, I went to the doctors for the severe pain in my back/spine. This was an orthopedic doctor. So far no was has addressed the severe pain in my back and spine. He was a little nervous to really touch me or do anything because of my chronic illnesses, etc. He did refer me to a Neorosurgeon, but guess who? Yes Dr. Beers, the same one who placed the "wasted" shunt in me, and had assualted me. And guess what? I told him that there was no way I would ever let Dr. Beers near me again. Go Figure. I know that we are taught that we should forgive, but I am really struggling with this. I am limited here. So in the meantime, Dr. Davis (Ortho) will have me do PT for the next week to see if that will help. He also told me to go back to Healion and have them order an MRI of my Spine since they were suppose to have done this last week but instead sent me to the hospital for a spinal tap. So my husband and I went back sat there again for 4 hours, to then be told to come back today and after the doctor talkked with the Ortho doc they would decide on the MRI or not. We were furious that again we sat there while I was in so much pain, yet nothing was done to help me. My EKG's are abnormal, my labs are abnormal yet nothing done to help get to the bottom of it. Everyone is just passing the buck. I wasn't asking for pain meds, etc as these are not helping anyway, just for someone to do there job, take the MRI and give me some answers as to why this is happening. I have never had such severe pain in my spine like this. It hurts to walk and sit.

On top of everything they still can't figure out why my ears are plugged, and my white cell count is high. I feel hopless and lost. Last night I was in so much excruciating pain that I turned to my husband and point blank said I am done living this way and being in so much pain, and dealing with doctors who don't seem to know what to do except to leave me this way, that I would rather be dead. He could only reply with "Don't give up, you are loved" This was nice but love is not taking my misery away. Maybe it is my depression caused by the pain that is making me think that death would be better than a life of pain. I have no quality of life anymore. My children comment about it as well. Everyone is tired of this, but most of all me. I have caused sadness for my family, financial hardship, etc. This is my struggle, not theirs. It seems as if no one understands. I put on a good face for those who know me, as if I am o.k. but I truly am not.
This disease has taken over me, my life, and my family. I am now so very tired of fighting the fight and not going anywhere.
I pray very very often to give me the strength and to heal this pain, yet still no answers.
I have taken to set up my plans on my parting wishes, as I want to alleviate as much stress on my family as the time comes. My family does not deserve any of this.
I am met with roadblock after roadblock. I am just tired of all the pain and suffering this has caused.

Is no one listening?

the last 2 days I have been back and forth to the emrgent care cervices. I was told that my head CT looked the same. Because the radiologogy dept closed I was asked to return the following a.m. for an x-rays on my back and to check labs again as they discovered that my white blood count is up, but don't know why. (I had gone in with right face numbness, severe back pain, and headache.) So I show up bright and early yesterday morning. The docctor takes a look at me and says, he needed to call my Neurologist. He said he would be doing nothing until speaking to her. He did and a LP was recommended. I was told that they had an ambulance coming for me. I explained that I did not want a LP, as I was trying to see a Chiari Specialist and the info I have received says a LP can make the situation worse (further desending the tonsils) They wouldn't listen My keys were taken as they did not want me to drive as I was having some blurry vision. The ambulance came, as well as the fire dept. My keys were returned to me once I was strapped to the guerney. They took me to the hopsital. When I arrived I was told that I was there for a LP. I again expained my refusal. They again called my Neurologist. The ER doctor returned and checked my legs and my back. He then told me I needed to have an LP and that my Neurologist ordered it. I asked just for the MRI on my back, they still refused to treat my back.

SO .......

I just had a LP late last night at the ER. I have a slight headache still and my back pain iS worse. We fought against this and I lost. After trying to place a IV in me and blowing my veins 6 times, they finally got one in. They kept asking me why I was refusing the LP. I explained to them that I had been told that my cerrebellum tonsils have distended into my spinal cannal some (Chiari) and are compressed, and although my Neurologist could not officially diagnose me with it because she goes by th 5mm rule, and I am only 3. For people with Chiari it is advised not to have a LP done, until after seeing a Chiari speacialist. Were in the process now. So with all this said they gave me 3 mm Ativan, as they said I had alot of aniexty about the LP. I told them that I didn't want one still. After a while they said they were taking me to radiology to xray my back, (That is why I went) They had me get on the table, and the next thing I know they said they were giving me Versed. After about 5 min. I was out. (right prior to this they had me sign papers for my admittance. I woke up to find that they had gone ahead and done my spinal tap. I was furious! They then told me to relax, that my Neurologist had ordered it and felt that it was safe beceuase my tonsils were not herniated to 5mm. I felt so betrayed. I then asked about my back and the infection they said I had. They said they weren't sure about the infection, and didn't take xray of my back and at this time they were going to release me while they wait on my MS panel, and the spinal fluid. This was all crazy. How can they go ahead against you permission and do things like this. I had no fever, no stiff neck, etc to warrant a LP. They were fishing for what the cause is of the infection. And yet still no answers. I wast told to see my Neurologist today, yet she can't see me and sent a message through her nurse that she will call me later, but she won't have any results for several weeks. Great! What about my spine and back pain? And now I am left with the worst spinal headache.

Today now I sit in pain further pain.

My Daily Battle and Upcoming Ones

It started again last night. The ever pounding pressure like headache. The pressure behind my left eye. Although I have lost sight in it already, it still has much pressure behind it. I took a Dilauded for the pain as it stretched and expanded from my brain down my spine. It hurt to lay down but was much worse sitting up. The Dialauded took barely the edge off the pain but had a tendency to also finally get me a little sleep. I woke up exhausted, and knowing that I had 4 kids to get to school. My task was barely accomplished, yet even my 7 yr. old understood my condition, and got himself ready and fed. I am so proud of him yet so saddened that this illness also takes allot from him as a child. Sometimes he has to do more than any 7 yr. old should.My 7 yr. old is very caring, and although he likes to be comforted, and is a snuggle bug, he likes to give the same back to me.I have slept most of today, due to the nausea, palpitations, chest pain, and numbness down my face. It feels as if someone is pressing down on the top of my head and cramming it into my spine. My ears are ringing as well.Yet with all of this I find myself trying several times today trying to sit up for a few minutes and accessing the Internet to continue to research and find answers to my illnesses so that I may find a cure.Tomorrow will be the 1 yr. mark of my father-in laws suicide. I am praying that I will be in less pain to be their for my family and to comfort them, and myself. I was very close to him as well. I adored him. I took his death very hard. He had been placed on a medication for depression called Lexapro. He had only been on it for about 1 week and decided he didn't like the side effects, so just stopped and 2 days later went to his favorite place with his 2 best hunting dogs, shot them both, and turned the gun on himself. There is nothing worse than having a coroner at you door giving you the news. I collected his personal effects including the gun. Because of my husbands emotional state at the time, I kept the gun that was wrapped in a brown paper bag and hid it from him until the following morning. I knew he would look in the safe so I left with it under my pillow as to keep it safe from my husband and children. The next morning I took it to my friend who is a firearm dealer and asked him to assist me in cleaning it up( It was a bloody mess) He agreed to as my husband and his brothers wanted it so that they could dismantle it and destroy it. I think it was part of their own closure. So I never wanted them to see it in its last condition. Tomorrow will be hard for many. 2 days after his death we went to the lake and I had each member of the family write a message to him on a 3x5 card, and we attached each to a balloon and let them go. This was to help my children with grieving and trying to remember the good things about their grandpa. We will again do this tomorrow, as we do for holidays, etc.I have set my husband up for a massage tomorrow (A Christmas present from last year)to help with tension and stress that tomorrow will be for him. I wish I could endure one myself, but to be touched hurts.Well I am off for now as back to lying down I go.
Labels: brain, dilaudid, family, headaches, Lexapro, numbness, ringing in ears, spine

Why is it when you are at your lowest things just get worse?

Well, I got some interesting news today and over the last few days. I had ordered my medical records from out of state, several months ago. They finally arrived today. yet were incomplete. However, they did send me my old MRI's and a CT scan from 2002. I was shocked to see that I was unaware of the diagnoses made in regards to me. I was a 33 yr. old woman with degenerative disc disease (Spondylosis) Something you are not to have until much later on in life. It stated that C2-3 and C 3-4, as well as T1 and T2. They also stated C 3-4 posterior spinal ligament has mild focal prominence. I also have one solitary focus of hyperdensity in the left parietal lobe which represent an old infaract approx 5mm in size. This means that at some point there was a stroke or injury of some kind. WoW! Nice for this info to be shared with me.
Consistency in care is important to me to reach a cure and be out of this severe pain, but supprisingly enough doctors sometime fail to share this info. My current MRI ( 10/07) stated that I hade Mild ethmiod disease, Empty Sella, My optic nerves is tortuous, meaning kinked/crooked. I was told that my cellubellar tonsils have decended some as well.

On top of this news as many of you know that unfortunately sometimes when medical situations come up, so do many financial problems. When I became very sick from May 07 on, we got behind on bills, motgage, etc. I was in and out of the hospital, having different surgeries, fighting sepsis, etc. My husband was trying to help care for me and our 4 children and still try to work. He is a Fed Ex driver, and has no benefits. So when he doesn't work he doesn't get paid. So as you know you can really get behind. It came to the point that they mortgage company was going to forclose on our home, had increase our payments, etc. I have worked for many months for a resolution to avoid loosing our home. Finally they agreed to a rate reduction for 6 months to help get us back on our feet. this was great news!!! Finally some relief from the stress. But then came the bad news. hey want the first payment on 1/16/08. Impossible! My husband, Steve doesn't get paid until 1/18/08. I asked them if they could wait until then. They refused saying that if we wanted to still qualify for this modification than they need to have the money by the 16th. Once again it seems as if this illness has taken over our lives causing further stress and hardship. What are we to do? We don't have credit cards, as this makes situations worse, and causes further debts. We are on a very strict budget and live paycheck to paycheck since I am no longer working due to the illness. So basically all we can do is pray and pray very hard that a miracle may come to us. I just can't believe that they are so unwilling to wait 2 extra days.

Well I believe the lord sometimes works in mysterious way.

Today has been stressful, and I am fighting another headache and back pain, yet I won't give up hope on finding my miracles.

Yet even though all of this is happening I can stop to think that there must be a message or lesson to be learned, but I am sure when I figure it all out it will have all made perfect sense, and it was all reasonable. Yet right now it just feels over whelming.

Continually Struggling

Always my salvation was laughter–laughing with friends, with girlfriends, laughing in the dark…it turned out that when hardships came, the sense of humor of my friends, and of my own, saved the day.
-Anne Lamott



I continually struggle with what to say to friends and family who subscribe to a way of thinking. And I’m frustrated beyond belief when people tell me such things as "if you just counted your blessings" or "if you just mastered your thoughts" or "if you were just more positive and optimistic" then you wouldn’t be in so much pain. I’ve wanted God to give them a day in my brain so that they can really appreciate what they are saying to me and how it might feel if received on the other end. Ahem. Sorry, back to you. O.K. Not really as I couldn't possible wish this on anyone. But do people really think about what they say before the actually say it? I think not.


For those who do not have to endure the so many symptoms related to these illnesses, I would like to say:

1) Do not ever say " I understand how you feel". Because if you aren't walking in my shoes than you truly don't know.

2) Do not ever say "I feel your pain". because I may feel pain more intensly than you.

3) When I state that my headache is so bad, don't complete with me to make your issues worse, just be understanding and careing.

4) When I tell you to not touch me, understand that it is because my skin is on fire, I hurt and every touch hurts worse, not that I am pushing you away.

5)Do not ask me how I am feeling today if you really don't want to hear the answer, because it may be long.

6) Don't assume that because today may be a good day for me that tomorrow will be as well.

7) Please understand that I may have to cancel our vacations, and family outings at the last minute because I hurt, but I am too very disapointed.

8) Please know that I too feel the strain these illnesses are causing on all of our live.

9) Please continue to walk this path that the Lord has given to me to take on, and we shall together find a cure.

10) Know that I might sometimes forget to say how much I appreciated you and your support as sometimes I feel consumed by this illness and its symptoms, but I do appreciate you and your support.

11) Know that I cherish your friendships, love, understanding and compassion.

Today Hope.

Well over the last few days, I have been in touch with a Chiari Survivor/patient, named Leslie Witty. She had surgery at the Chiari Institute. What a great and strong women. She has offered to assist me in finding somewhere to go and for assistance in my own struggles. Each place I call says they do not take my insurance. I do not qualify for Medicare until 11/09, so until then I have been placed on State Medicaid for my health insurance.

I was able to get in touch with the Mayo Clinic in AZ. Although they will not except my out of State Medicaid, they do have a Charity Fund. I applied today and am sending in my application. I pray that this will work for me, and that they will see me and assist me in a cure.

No one but others in my same situation can understand the pain involed in these diseases.

I won't give up!

Edited: Well I was asked to send my MRI report to the Mayo Clinic, they took my info, and will be sending it to the Neurosurgery Dept. to review. This is a start. Although like my blog buddy, Leslie Witty, MRI and CT's all were being reported as normal by radiologist with a few small exceptions, of sinus disease on my last one. Yet I was looking through my records from my Neurologist, and see that she notes that " The Patient soes have slightly congested foramen magna, but the tonsils are truly not herniated to the 5mm criteria for Chiari malformation. She does not meet this criteria." Yet evrything that I am reading states otherwise, as you now no longer need to be 5mm. She says I am about 3mm or so.

See this pic from my recent MRI in Oct 2007.

Yesterday Hopefull....Today Hopeless

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.

2nd surgery after tubes has been in for 3 weeks.

Still drained through large holes on ends for 2 more weeks.