When it all changed in my life.....

It was in November of 2005. I was driving my car and some one rear ended me very hard. Oh god my head feel like it exploded. The noise in my ears was awful. The guy who hit me got out of his truck and banged on my window, saying your car is fine, I am late for work here's my info. I was crying and my head hurt. I picked up my cell phone and called 911. State police where right there with in 1 minute. Then I called my husband at work, we work together. He was there in about 6 minutes.

I never took a ride in the ambulance, they checked me out and released me. My car was smashed and they said it's OK to drive. Well I did, right to the Ford Dealership I worked for and bought my car from. Body shop manager said "You can't drive this, your frame is bent". 6 weeks to fix the back half of my car.

Now the pain is bad, I go to a Chiro. What a mistake that was. With in 2 weeks I can hardly move my neck and my head is throbbing. I stop going. Right after Christmas I am so dizzy I start falling down my stairs. Call my PCP and he see me and orders an MRI of my Brain and C spine. He calls me the next day and says I need to see a Neurologist for they found something on my MRI called Arnold Chiari Malformation. So off I go.

This doctor barely looks at me, has me walk the hall way and turns around to say.....this is Incidental and nothing to worry about. You have Whiplash. Here take these pills and call me in 6 months if things don't improve. Well they did not, they got worse. I try several time to get an appointment with him but no return calls, so I fax......YOUR FIRED!

I go to a recommended NL from my mom. He really is a good doctor. Looks at my MRI and tells me that is could be Chiari but.....lets look at your neck. So he treats me for Occipital Neuralgia by injections into the C1 area. Puts me on Nerve med's, sets me up with PT and OT. Now by June of 06 things are starting to calm down a bit. Still no memory, still no sleep, tripping over my own feet, pressure is building up in my right eye and ear, but the pain in my neck is improving.

I treat myself to a fancy hair cut and dye. Well let me tell you that if you think you have CM do not put your head in a hairdressers sink. I had the same explosive thing happen in my head. Not so much a treat anymore, now I can't wait to go home and crawl up in bed and cry. Call the good doctor back and go see him for more shots. Plus a bonus of increased ringing in my right ear. We continue with this treatment threw out the fall and winter. By January 07 I am back to June of 06, so I stop treating.

March of 07 the ringing is getting really bad and my eye pressure has increased, motor skills are declining as with my memory. Call my PCP and ask if I should have another MRI? He says no, lets send you to an ENT specialist. Well that was a waste. All the test they did where all NORMAL. So I just try and fumble threw things. Work is stressful and I am not sleeping well, my Hubby is frustrated because I am not well or happy. I now am bringing my bed to work with me, pillows and blankets are always handy in my car for a nap during my work day.

June of 07 hubby and I go away for a nice week vacation in the White Mountains. We gear up for some stream fishing and mountain drives. It was really good to get away. After we are there for a couple days I feel like I have the worst flu every. Can not get rid of this head ache and my body hurts so bad. Took a drive UP Mt. Washington and it happened again! That explosion pressure in my head. Was it from the altitude? Was it the high winds? The cold? I did not do anything but walk around. So for a couple days I took it easy, had to cause I could hardly breath or think.

It's now July of 07. By the way I am a Commercial Sales Manager at a Ford Truck Dealership! This is coming into my prime time for selling. I do! Sold a nice plow truck but the blade is in storage.....at this point no one has told me not to lift or do anything........ so far everything is "Incidental"! That was the last sale for 6 weeks for me! I installed the plow and was layed up in bed! So much pressure in my head I wanted to die!

I get a referral to an Neuro Eye Dr @ New England Eye. My eye looks that bad. I bring all my stuff and he told me, your eye sight is fine but we believe this is really related to having CM and YOU NEED to see a Neurosurgeon. Sends me back to my Neurologist for further work up and a referral.

My NL again was wonderful, agreed that we need to pursue this since everything else has not worked. Told me I needed to have a Flow Study done. He referred me to a different hospital and told me under NO circumstances do I have anyone but this NS touch my head for this!

So I wait for my appointment at home. I have never been in so much pain in all my life, I can hardly lift my head off the pillow. Finally, it's here! I go and bring all my stuff and he is very patient with me and the exam is LONG. He does not believe the CM is my current problem! He feels that I have Chronic Pain Syndrome due to Whiplash. He does do the flow study, which comes back "with in the guidelines". Oh am I just let down! His recommendation was for me to start an anti-depressant, heavy exercise program and yoga. I was angry at first with this Top Notch NS, but I agreed to try.

I call my PCP for an appointment to start the drugs. With in a couple months they seem to be working. At least I am not all freaked out, so maybe he has something here. I am able to work most days. I inform people I work with of my struggles and they seem OK with it, me disappearing for a little rest.

The holidays! I go out shopping on my own. Heavy packages! I hurt myself again! I am in the parking lot sitting in my car, crying uncontrollable because I am now having tremors that will not stop. I can not hold the steering wheel and the whole world seems like it is spinning. After about 1 hour it stops to the point I can drive home. Pushing threw is what I have to do!

January 08, I land in the ER. So weak and unable to walk correctly, can not think straight and I hurt all over. They offer me drugs........not what I am here for, NO. They do a CT of my head. shows CM of 7mm. Refers me to Neuro Clinic, call your PCP for a referral. I do and his nurse tells me.......we know all about your CM and we don't think you need to be seem by any further Neuro's. It's just Chronic Pain Syndrome! So I refer myself, call them and tell them what my PCP's office said and they booked me right in.

This is the month I joined a wonderful support via the Internet. WWW.ASAP.ORG, best thing I have done for myself. I started to research Chiari and related neuro disorders. I pledged to myself this is the year I get this problem under control.

I get assigned a nice Resident. He seems good and concerned about my health. So we take my list and start to get things tested. Sleep...........I have central apnea. Head pain..........does so many different MRI's and gets me going on a Non narcotic med to help with swelling. This helps, so we are moving in the right direction. He orders me to restrict my activities and weight carrying to under 20lbs, cut down on my hours as much as I can. Gives me a great book to read about Head Aches, which I should have been a little suspicious about. I have been told I am "Migrainus" and I hate that term...... I am not! I read it and learn a lot about head aches and food, environment so not a total waste.

June 08, my right leg is now burning and so is my right arm. Like someone punched me and it throbs. I am very dizzy when I get up, nearly passing out. Can not keep warm. They order an Autonomic Test. I failed! They tilted me and passed out! Did the muscle biopsy and failed.... Small fiber neuropathy. Anything else you all want to give me! The Asst. Professor of the Dept did the testing, he was concerned about the Chiari! First Dr in a long time to be concerned about this. He told me I really need to have a different kind of MRI. Because my symptoms mainly occur when I am Up Right. He was not sure where they even had them or if I may have to travel. Oh I knew where it was and told him so.........in CT. So off I go to wait for an appointment there. Mean time he puts me on medication to raise my dangerously low blood pressure, side effects......pressure increase in the head!

My Resident NL calls me and is not very excited with the idea of an Up Right MRI. Why? Because there are NO case studies yet done with Chiari to compare to. So What! Lets be the first! He refuses to order my entire spine and only will do my brain and upper C. He warns that they are not looking to see if my herniation goes down further, they are only looking to see if I have any kinking. That there is no guidelines for comparing a MRI with a patient having CM. Ya ya ya I get it Doc., your nervous!

Now I call the Neurosurgeon back and update him. Blood pressure, small fiber damage, worsting head pain and pressure. I ask his opinion of the MRI and he is VERY pleased I am having it done. He is very concerned about the BP. Asked me to email when I have the hard copy CD and he will take a look, told me I don't want their report, I want the images.

August 15, 2008. I have my MRI @ Yale Medical in New Haven, CT. Bring all my old ones for comparing. I asked how many patients per year do you scan here for Chiari? Oh 2-3! What! This sends a real red flag up for me! Do they even know what they are looking for? I tell myself don't freak out, just get your CD and go back to Boston!

Of course the call comes in Monday from the good resident and he tells me everything is normal and fine by there report. I asked did you SEE the scan? No! Are you sure then it's OK? Well they tell me it is! NO, I tell him, I have a copy and I will bring it in for you to see.

September 08, I bring it in. He pops up a few generic slides, ones that even I know how to read and says yup it looks fine! Calls in his Attending and she agrees it looks fine. Both look at me and tell me they have discussed my case and want me to join a 6 week pain management clinic, to learn how to manage my daily activities, get Botox injections and if I could just take a year off from work. WOW, where did all this come from? I leave twisted! Not real happy! Good thing I still have one last chance with the Neurosurgeon in Boston.

Oh by the way, I never told the Good Resident that I had a second opinion appointment set up with a NS in Boston.

I go and see the wonderful Dr. Heilman @ Tufts Medical Center in Boston. Traffic is so backed up I am 2 hours late and he waits for me! Nothing was rushed even thou he was to board a plane. When he put up on the computer my CD he went right for the area that should have been looked at by others before him. The herniation had plugged me down to C1. I was Blocked! He turned to me and said, "here is your problem, you see right here, there is no fluid flowing". Both of us nearly cried, I mean the Dr and I! The look on his face I am sure matched mine, relief and validation. So I agreed whole heartily to decompression surgery. He asked if he could keep the CD......YES teach with it PLEASE!

I called the Resident to inform him that Dr. Heilman may be calling for records so please assist him. He was MAD! MAD at me! Yelled that he could not have missed anything. Why would I want to chance having surgery when I only have migraines? This whole conversation took me by surprise, was not excepting this! Why would I want to have a bump at the back of my head. If indeed I have increased pressure then why don't I do a spinal tap to check? Told me he would get back with me in a day or so. He did alright, to badger me some more. plus to inform me that THEY wanted a second opinion done at a different hospital. I am thinking your crazy! I have been suffering for so long and now you are telling me to go somewhere else? NO! I asked him: "How many patients do you treat that YOU have had decompression surgery done?", he has had ZERO! Why did I not ask this from the beginning? Should have known when he gave me the book to read some months ago, remember?

After my husband meet with Dr. Heilman 2 weeks later, we decided as a team and family this was needed. All questions were answered and the surgery was properly explained, with recovery and success rates. We all agreed it was needed and I was mentally and physically ready. October 7, 2008!