to all my name is Michelle, I'm 33 years old and a single parent.
I really wouldn't know where the best place to start my story. So I guess I go ahead and start from the beginning.
I was "fine and healthy" except for already being diagnosed with carpel tunnel in both hands and having high blood pressure. I was working full time at a local daycare, where I've worked for the last 11 years. Plus I was taking night college classes to make a better life for me and my child. I can actually remember the day, year when my life took a down hill turn and nothing would ever be the same.
It was June 2002, I had just got a tooth pulled and instead of it getting better it got worse, soon afterwards I passed out/ fainted at home hitting my head on a bookcase. after that incident, I started having facial seizures/ TMJ- which is a very painful thing to have. your face twitches uncontrollably and whenever I tried to lay down to sleep it would feel like pins were being pushed into my face., and you constantly have sharp, shooting pains from your jaw to your temple.
I went to the ER room on several occasions and was diagnosed with heart palpitations, my "controllable" blood pressure became uncontrollable, I had to quit work and school all together. All of this happened within the span on a month and a half. I saw a oral surgeon to get a second opinion about the facial seizures and he recommended that I get an MRI to check for Multiple Sclerosis as he felt that that was what was wrong with me. I urged my doctor to order this test as by then I had some noticeable behavior and personality changes so much so that my old friends couldn't stand to be around me anymore. He finally agreed and the day came that he personally called to tell me the results, which I knew that it wasn't good.
He said that the MRI found the cyst in my cerebellum area, and that it had moved my brain over slightly. About a few weeks later he set me up an appt to see a neurologist and truthfully he was the only doctor that took the time to show me the MRI films, tell me the 3 options that I had, and that he would discuss my case with a surgeon.
That was where I first found out that surgeons aren't so quick to do anything about cysts. When he first saw my MRI film he told the neurologist that he didn't know what it was, and that he would discuss my case with the chief surgeon at a major hospital. But as soon as I walk in the door that surgeon did a 180 turn, and said that it was definitely an Arachnoid cyst and that I had it since birth. When the neurologist said that no it recently formed. He also made the experience of seeing him a scary one because he repeatedly told me that he did do a surgery or fenestration on someone and he kept shaking his head and saying that that person isn't doing so well right now. He also told me to get a second opinion and if that surgeon agreed that I needed surgery that he would be happy to assist surgeon # 2.
Seeing surgeon # 2, wasn't much better, he did seem more confident- maybe cocky is a better word for it= he swore up and down that there quote wasn't any medicine out there to shrink it ( but I found out different later) because he would know about it. He also said that He felt that I didn't need the surgery and he agreed that if I can live with it then do, cause he thought that all my symptoms weren't consistent with the cyst. The only helpful thing that he did say was to "wait and see", if cyst grew then he would defiantly operate.
Much later I saw surgeon # 3, and he didn't exactly have a loving bedside manner either, he agreed with the other surgeons and he quickly added that if and when it came time for surgery "go back to the other surgeons to let them do it" meaning he didn't want to get involved. During that time I was forced to change family doctors as my coverage ran out and had to get Medicare. That doctor has and still is a worser pain sometimes then my illness.(Seriously)
She was trying to be helpful at first by telling me that cysts aren't symptomatic and that all my problems were stemming from my blood pressure. and that she was "going to work on that first". Well it has been exactly 1 year and 2 months and I still have uncontrolled blood pressure along with some new things as well. Plus she has requested me to see a psychiatrist. I went along with this at first because I also had applied for disability from social security and they have been dragging their governmental feet, by denying me twice. And my lawyer suggested that I go along with it and see the psychiatrist as they thought she could greatly help my case. She agreed with my doctor that I have depression, and anxiety attacks as well.And she prescribed medicine for me well that now brings my grand total up to 12 medicines a day. I am still waiting on social security's 3rd decision about my case. The only suggestion that I can offer up out there is PLEASE get a lawyer first! before going thru the whole process it will save countless problems sometimes, just make sure that the law firm is helpful and out to help you and not make themselves richer in the process. Because in my case I got a lawyer after the 2nd denial and at first thought that everything would be okay, and that I had a chance but as month after month went by and their nurses started researching cysts, or not finding anything out about them. the calls got fewer and my case got moved around so much that I stopped counting exactly how many lawyers that they had in one law firm.
On the day before the hearing my lawyer calls and says that she doesn't have enough things to present at my case and all the stuff that I offered her she wouldn't look at or take. And when I do go in to hearing all she does is pull my chair in and out. All the while I'm thinking, she's going to get 10% of my back disability for that. She does tell me that she thinks that it went well and that, it's a toss up whether or not I'll get it or not.And the judge was really great, he listened to what I had to say but he did order me to see another psychiatrist. Hopefully knock on wood it will go through.
Anyway this would leave me with Today and Now, I am constantly dizzy, constantly nauseated or I throw up all the time, I am having balance and coordination problems, I have trouble remembering things and leave notes all over my house, I can't do much driving any more as I am having blackout spells where I forget what I doing, going. I also get like this in stores, etc so that throws me to not be able to finish shopping like I want to.
My eyes gets blurry allot lately, I have killer headaches- that feel like someone is hitting me on the head with a hammer, My son has missed so much school and I feel like he's missing so much of life because mommy's sick all of the time and can't take him to the park, or to special events etc. It also has impacted my parents life as they have to constantly watch what I'm doing when they are older and my dad is getting ready to retire instead of planning trips, seeing the world, etc they have to take over doing things for my son, plus chauffer me around when I can't.
I have talked with my doctor about getting cyst drained but was told " that if I did that my brain would be scrambled like a egg" My reply- I would rather have a scrambled head and feel healthy,and able to do what I want, then to be sick, depressed,and over medicated like I am now. This past 2 years has been a hard, hard struggle for me and everyone in my life. My biggest peeve is that Social Security automatically gives benefits to people with arthritis, tumors, ADHD kids, and even gout but not to people with cysts. I would like to see cysts, Arachnoid and otherwise to be added to there automatic blue book. Because even though on the outside we may look "okay" but