Thursday, May 24, 2012

Carnival #4- "If my life were a movie."

First of all welcome to the Chiari Carnival!! I am so excited to be a part of such a great group of fellow Chiarians... Too bad we had to meet this way but so glad I am in such great company... But on to this months topic!!

If my life were a movie... HERE GOES! Grab your popcorn, Coke (whatever flavor your prefer, in Texas we call everything Coke,) you better be sitting in you favorite chair and have had your potty break because believe my life as a movie is nothing but DRAMA!!

I wish the story I was about to tell you I was making up but unfortunately I'm not.

It all started the day my oldest was born. He just turned 9 in December. All went well with the labor, the epidural seemed ok until the anistesiologist had to try 3 times to get it to go in my back. Finally relief from those awful contractions. Then a beautiful baby is born. But why won't this terrible headache go away?? The nurses kept calling it a spinal headache (something about a spinal fluid leak from the epidural) They needed to try a blood patch. Ok... Here I am 23 with my first baby, feeling like I am literally dying. A blood patch is where they take blood from your arm and then insert it in a catheter back into your back where the spinal fluid is leaking. They tried a number of times to get blood out of my arms. I was so dehydrated they couldn't get blood from my arms (plural), numerous attempts were made. I was black and blue up and down my arms. I felt like I was being tortured. You must lay totally still this whole time because you have piping in your spinal cord the whole time. Well this attempt was unsuccessful and they didn't want to try again while I was there. After this you must lay on your back for a number hours. Now remember I had just had a baby! This baby needed to be nursed, changed, held, loved. Try doing that flat on your back! They then suggested I just drink Mountain Dew...(while flat on my back!)

I am now being released from the hospital still with a raging headache... Told to take it easy the pain will ease up. Life resumes but the pain never truly eases up 100%. I knew from taht moment on that something was not right. 2 and 1/2 years later we move when I am 7 months pregnant from a one horse town to the suberbs of a metropolitan area and my 2nd son is born, this time no epidural complications he is born, no spinal leak, no excrutiating headaches. But extreme fatigue after he is born... I go to the dr, I am diagnosed with MONO... REALLY!! I have a 1 week old! What kind of luck do I have?? I get over that hurdle of a newborn and 2 year old and am still getting headaches. I just figure it is exhaustion... But other weird things start happening. My equalibrium is off. I run into walls, my fingers and toes tingle, they also turn completely white like a dead person when they are cold (terrible circulation).

In the fall of 2007 I tell my PCP about these weird symptoms, he says he wants to send me for an MRI. He says you usually find a zebra while looking for a horse. We were doing scans for MS and lo and behold Chiari was the diagnoses. He was such a smart man! In this same time frame, I have a terrible headache that causes me to pass out cold and break a tooth, luckily it wasn't my jaw! My mother in law also passes away from breast cancer. Talk about super stressful!!

This wonderful PCP who helped me passed away in December 2007 in a motorcycle accident and I cried because he was my angel! Without him I may never have gotten the help I needed! After he diagnosed me I went from neurosurgeon to neurosurgeon because I am adament to keep my head in tact, I finally found one that said surgery could wait until my symptoms finally lead to it.

I have also jumped from neurologist to neurologist because many just feel that my headaches are migraines which simply isn't true!! There is a huge difference and I just want them to understand! I finally found a Pain Management Dr who had been great. But in 2009 I was fired from job and lost my insurance. Let me tell you not having insurance stinks when you have an illness. Many doctors won't see you! Well when you need medication what are you supposed to do? My medication costed $500 a month for almost a year. I was on unemployment and at times choosing whether to feed my family or buying my meds. My husbands had no job at the time either! We were literally broke! But going without medication is like a death sentence. I would have been bedridden and since I was the one with 3 jobs, I had to have the medication to make the money to keep our family going.

Things turned around but when my husband got a new job the company's insurance wouldn't cover preexisiteing conditions for 1 year! That is terrible!! Once again my new PCP covered for me and wrote prescriptions but he said you have got to go back to the specialist, but now the specialist isn't covered under the new insurance and here I am in 2012 back at square one about to have to start interviewing nuerologists all over again! Being sick really stinks. I told you my life was a movie....


leana101 said...

Hi your story sounds like mine a movie in 2001 after I had my first daughter I too went home with a terrible headache that they blamed on anemia well all was good for awhile after that I had another baby in 2003 and no problems until 2008 when I started getting crazy headaches that messed with my vision..well PCP said it was anxiety take anxiety made you will be fine well 1 week after starting I suffered from what they then said was some serotonin dumping syndrome I immediately quit that medicine and decided the PCP was crazy so off to see the chiropractor for neck adjustment (which was suggested by family member) big mistake things got worse needless to say in June 2011 symptoms kicked in so severe headaches dizziness fatigue legs giving out numbess and tingling horrible mental fog ears ringing and vision halos that I had to take a leave from work well when my FMLA ran out they started denying my short and long term disability have a lawyer workin now but from Sept 2011 to Dec 2011 it was CT scans and an MRI that diagnosed my Chiari with no posterior cerebral spinal fluid movement so I wasnt crazy but I am still home with neurologist telling me I am suffering from migraines and I should be able to take 15 pills and work yeah right i was denied SS fighting that too what a mess I hope it gets better soon have you experienced any of these problems?

W said...

Hello. What a story! I am not sure why you want to aviod the decompression surgery? I had mild to worsening symptoms for 10 years, started after a car accident. Anyways i had surgery in 2003. The surgery recovery was really tough. I had a tougher time than most as i threw up for 5 days after. Everytime i moved i would puke. However, no more chiari headaches! I do have neck pain now because they had to take bone off my first vertbra and muscle pain. But those nasty headaches are gone and all the other weird symptoms. Now i am far from normal, but so much improved. I used to work in physical therapy in neural rehad of all things. And my neurosurgeon had an opinion on waiting for surgery. Nervous tissue does not regenerate. So after years of pressure on your nerves/cranial nerves there is damage done that wont reverse. And all this pressure can lead to a syrinx as the bodys way of compensating for all that pressure. The surgeon took pics of my brain when he had my head opened. First pick is of when hefirst opened everything up and my brain was trying to pop through the incision. When he was done with the repair he took thesecond pic and my brain was laying below the edge of the opening, he said this is how it should look. I had numbness and tingling, weird leg symptoms. My upper back was numb, constant headaches, arm pain, rushing water noises in my ears, tinglies o. My scalp and on my face sometimes. Almost all of that is gone. I hpgot pregnant with first child two months after surgery...that was not the plan but worked out fine. Had c sections as no one with chiari should push a baby out or have epidurals.