Well the good times have ended...

I have the start of a headache coming on. I just took some of my pain meds so hopefully it will make the pain bearable.

I still haven't heard from the neurologist about an appointment. If I don't hear anything by Wednesday, I am calling.

AN UPDATE...
Although I have had to take medicine, it seems to stop the headache!!!

Friday was BADDDDDD!!!!!!

I woke up with the worst headache. Made myself get ready for work. Got out the door and was trying to get going with the day. I had an event at work on Saturday that I was in charge of. By 9:30am I couldn't stand it anymore. I really thought my head was going to explode!!! I tried to get everything together for the next day's event and delegated to someone in the office. (Thank goodness for great co-workers) and I went home. I spent the rest of the day on the couch. I was so miserable that I didn't even change out of my work clothes, I got my pillow and headed straight for the couch. This had to be one of the worst days ever.

I know what caused it... Wednesday I had to fly to Houston to do a college fair at M.D. Anderson. My travel bag weighed at least 50lbs. Well I didn't check it because I knew it would be a quick trip. The bag does not fit down the aisle, so I had to turn it sideways and limp my way to a seat. I then had to hoist the bag into the overhead bin. Super bad decision!!

I woke up Thursday not feeling so great. Bad headache and super tense neck and shoulder muschles. I even went to the mall at lunch and paid $12 for the 15 chair massage out in the middle of everyone in the mall. I was past anyone thinking I was crazy. This 15 minutes was well spent. But of course there is never quick fix. So I was still sore and I think Friday was just the end all be all.

Saturday was much better and Sunday... I don't want to say it out loud. But Sunday was the first day I have been truly headache free in MONTHS!!!!

Of course here we are on Monday, and I can feel one starting to crop up. Oh the joys of crazy sicknesses!

2nd Confirmation

I had my 2nd appointment with Dr. Michael and after looking at the MRIs done on Thursday he reconfirmed what Dr. Teal (the first neurosurgeon) had said. I do have CM1 and he said that I could now have surgery. However he said that he felt that right now I could just do pain management until any other symptoms occur or the pain just becomes unbearable that surgery is the only option.

You should have seen the look of relief on Travis' face. I now am being referred to a neurologist to discuss pain management. As we found out today my headaches could actually be combination headaches the Chiari plus a migraine, or tension, or sinus. The neurologist can help me get on the right medicine so that I can function from day to day.

I go back to Dr. Michael in 6 months unless I feel I need to come back sooner. Travis did ask if the Chiari is something that can get worse and the dr. said yes. He said that is probably why the real painful headaches just started in November. My cerebral tonsils have moved further into the spinal column. I asked him I will know if the Chiari is worsening, he said that I will start having other symptoms then just a headache. The main symptom would be tingling or loosing feeling in my feet, hands or arms. He said if this happens before my 6 month check-up to definitely come see him.

He basically said that surgery will be inevitable, but we can put it off for now.

Buried Alive...

I can now say that I know what it feels like to be buried alive. I had my MRIs on Thursday. I was literally in that cocoon for 3 hours. The only time I got to come out was when they needed to switch the headpiece. I did get 1 chance to go to the bathroom and get a drink of water about and hour and half into it. The radiologists (yes there were two because the younger guy who had been doing this for 4 years had never done a CSF MRI aka CINE for Chiari) were super nice and said I was such a trooper for having such extensive tests run.

I have another appointment with the neurosurgeon on Monday, he will tell me what the MRIs said.

I have been feeling ok. My head hurts all the time and I know Travis is getting frustrated with me because at the end of the day I just need to lay around because I am so tired and in so much pain that it takes all I have just to play with the boys. I have tried to explain to him that it is not me being lazy. I just don't want him to resent me. I have told him how much I appreciate all he is doing for me and the boys.

The MRIs are scheduled!

My 2nd set of MRIs are scheduled for Thursday afternoon. One of the MRIs will measure the flow of spinal fluid, it is called a CINE MRI, the second MRI will actually be of my who spine, this is called a cervical MRI. With the tests the dr should be able to tell much better if I really really do have CM1 or something else.

Today I feel bad...

Nothing I do or take will get rid of my headache. It is barely making a dent in decreasing the pain. The only relief I got was slumping down in a chair and putting my feet on the edge of the desk, semi fetal position sitting in the chair. But you can't do that at work all day.

I have thought about calling the neurosurgeon to get a different type of medicine. The meds I am using now were actually prescribed by neurosurgeon #1 and I have already had to refill the pain meds. I will be refilling the muscle relaxer in just a few days.

I literally have to take 2 pain pills every 4 hours and 2 muscle relaxers every 6 hours to make it through the day. And those don't rid me of the pain completely, but usually take the edge off.

NOT TODAY THOUGH!!!!!

Still Waiting...

I am waiting not so patiently for the 2nd neuro's scheduler to call me to schedule my MRIs and an appointment with the neurologist.

There is a ton of red tape, as everyone knows. I will update as soon as I know something!

Great 2nd Opinion

I went to a different neurosurgeon this morning. He said that he can’t be 100% that I have Chiari Type 1 Malformation without running some more tests. He feels I should not have the surgery until these tests are run. I now scheduled for a cervical MRI, a CINE MRI and a visit to the nuerologist. I am cancelling my May 7th surgery and going to switch to this second neurosurgeon. I am more comfortable with is proactive response versus the first neurosurgeon’s reactive response. Dr. Michael (the 2nd nuero) did say that he can’t guarantee that in a couple of months he may be recommending surgery for me but he would like to start with these other options first.

I will keep everyone updated as we continue on this journey.