Neurosurgeon Appointment

Well it feels like we are back a square one. We went back through everything we had discussed on the phone. And I told him that I had talked to the neurologist as well and he had said that the neurosurgeon was more than welcome to call him so they could talk.

He said that of course the decision for surgery was totally up to me and if the headaches weren’t too debilitating we could continue to hold off. My biggest concern about all this is the effect that the medication is having on my internal organs. The Axert I am prescribed now I am only supposed to take 9 pills a month. I take almost 1 daily. I am ok with taking a lot of Tylenol or Excedrin but I know that is hard on you liver and stomach. Another concern I have it the surgery has about a 60% success rate. It is great with stopping other symptoms I could develop such as numbness, extra clumsiness, hard to swallow. But it has poor success with stopping the headache, which is the only symptom I have.

He said after talking to the neurologist he would give me a call and we could go from there. He said if I wanted he would refer me to another neurologist to discuss options. I am just tired of the run around with no definite answer.

Home Makeover and a chat with the neurologist.

So what did everyone think??? I for one am even more nervous now for my surgery. But I am super happy that this very unknown condition was highlighted on national TV. Publicity is helpful when searching for a cure!

I spoke to the neurologist today, he says that he and his NP talk daily about their patients and he would be doing the same course of action his NP is following. I said I am not having migraines. He then tells me that Chiari doesn't cause headaches. ARE YOU KIDDING!!! That is like the #1 symptom! I now know I am not returning to him EVER! Do you research. Just a simple search on google about Chiari and one will see that headaches are a symptom. He then tells me he has many Chiari patients and I had to bite my tongue to keep from saying wow you have them fooled huh.

I also found a local Chiari group. They have monthly meetups and I can't wait to meet others like me!!

Surgery is imminent.

I just got off the phone with the neurosurgeon. He said he had been receiving copies of my records from the neurologist but the last one he received was from July, I told him he was missing two reports.

Anyways after telling him my concerns he tells me that he did send me to the neurologist to see if the headaches were caused by anything other than Chiari. (Which they obviously weren't since nothing I was given worked.)

He wants me to make an appointment to see him again, it was almost time for my 6 month check-up. We will discuss the last 6 months, having more MRIs done and then surgery, which we know now is my only option in the hopes of releaving the pain.

There are many non-surgical things that can be done to help keep you from getting a headache or any symptoms but with the job I do, traveling, sitting at the computer, standing behind a table at recruitment fairs, many of the techniques are just not feasible for me. I am going list them below. And you tell me...

Symptom Alleviation Methods

Not sure what to do...

I just saw the neurologist nurse practioner today. I go every 6-8 weeks because my headaches are still completely out of control. I just don't feel like she is doing the right thing. Everytime I look at her diagnoses sheet is says Migraine. I told her the first visit that I had Chiari not Migraines and she said that it wasn't the Chiari causing these headaches. I know now I should have just got up and left. I did see the real neurologist on my very first visit and he validated the Chiari. I now don't know what to do. She has completely changed my medicines again and I am going broke. My boss suggested I talk to my neurosurgeon (the guy that referred me in the first place) and tell him what is going and and see what he suggests. Any ideas???

Why???

I have felt awful the last couple of days. I thought maybe it was because I started back to yoga last Monday after a 2 month hiatus and I did some pose that made me hurt. But I am really hurting. My head is back to feeling like it did before I was on all sorts of medication.

Yesterday I took the day off to straighten my house, we moved Logan's furniture into Cole's room and there were books and piles of clothes everywhere. I would start to put stuff away but my head hurt so bad that I would just have to lay on the floor. I didnt' anything accomplished that I wanted to.

I am back at work today and guess what, my head still hurts. AGHHHHHH!

Chiari Do's and Don'ts

I saw this on another Chiari Blog and thought I would share...

DO'S & DON'TS WHEN DEALING WITH SOMEONE WITH CHIARI

DON'T ASSUME BECAUSE I LOOK WELL THAT I FEEL WELL. LOOKS CAN BE VERY
DECEIVING. MANY DAYS I LOOK GREAT, BUT I FEEL TERRIBLE.

DON'T TELL ME YOU KNOW HOW I FEEL. NO ONE KNOWS HOW ANYONE ELSE FEELS.
TWO PEOPLE WITH THE SAME DISEASE MAY FEEL TOTALLY DIFFERENT.

WE ALL HAVE VARYING THRESHOLDS OF PAIN AND PAIN CANNOT BE MEASURED.

DON'T TELL ME ABOUT YOUR AUNT GERTRUDE AND HER CHIARI AND HOW WELL SHE
MANAGED IN SPITE OF IT. I AM NOT AUNT GERTRUDE AND I AM DOING MY BEST.

DON'T TELL ME, "IT COULD BE WORSE." YES, IT COULD BE, BUT I DON'T NEED
TO BE REMINDED.

DON'T DECIDE WHAT I AM CAPABLE OF DOING. ALLOW ME TO DECIDE WHAT
ACTIVITIES I CAN PARTICIPATE IN. THERE MAY BE TIMES I MAKE THE WRONG
DECISION, AND IF I DO, I'LL KNOW IT SOON ENOUGH.

DON'T BE UPSET THAT YOU CANNOT EASE MY PROBLEMS. IT WON'T DO ANY GOOD
FOR BOTH OF US TO BE MISERABLE.

DON'T ASK ME HOW I FEEL UNLESS YOU REALLY WANT TO KNOW. YOU MAY HEAR A
LOT MORE THAN YOU ARE PREPARED TO LISTEN TO.

DON'T ASSUME BECAUSE I DID A CERTAIN ACTIVITY YESTERDAY THAT I CAN DO
IT
TODAY. CHIARI IS EVER-CHANGING.

DO LEARN EVERYTHING YOU CAN ABOUT THE DISEASE. THE MORE YOU KNOW, THE
BETTER EQUIPPED YOU WILL BE TO KNOW WHAT TO EXPECT.

DO REALIZE I AM ANGRY AND FRUSTRATED WITH THE DISEASE, NOT WITH YOU.

DO LET ME KNOW YOU ARE AVAILABLE TO HELP ME WHEN I ASK. I'LL BE
GRATEFUL.

DO OFFER ME LOTS OF HUGS AND ENCOURAGEMENT.

DO UNDERSTAND WHY I CANCEL PLANS AT THE LAST MINUTE. I NEVER KNOW FROM
ONE DAY TO THE NEXT HOW I WILL FEEL.CHIARI IS LIKE THAT.

DO CONTINUE TO INVITE ME TO ALL THE ACTIVITIES. JUST BECAUSE I AM NOT
ABLE TO BIKE RIDE ALONG WITH THE GANG DOES NOT MEAN I CAN'T MEET YOU
FOR
THE PICNIC AT THE END OF THE TRAIL. PLEASE LET ME DECIDE

AUTHOR UNKNOWN

Extreme Makeover Home Edition

Just a quick plug for Extreme Home Makever.

On October 21st they will be helping a family whose mother and daugther have Chiari Malformation.

Here is a link to their story!