Chiari Center Milwaukee, WI

Ok, I’m trying to get to sleep. Little anxious about the day tomorrow. I’ll have a Baers, sseps, Mri cine and 3D. Then meet with dr heffezz. I’m so praying for a plan. Since he already knows I have chiari, that’s one step. I’m grateful yet concerned that he moved so fast to get me in for the tests and consult. Concerned…is this a normal time line? Or does he see something that he feels must be done faster. Don’t have a clue but I know the Lord will use him to get me at least one more step closer to answers.

Id like to post throughout the day so you all considering this doctor will have a personal opinion. About the esthetics, friendliness, ability, etc.


I hope you get good news. I personally think it's great that your doctor is reacting quickly. It is so important to have a caring, compassionate doctor that you trust. I was fortunate to have one like that who did my surgery in Jul 2010. I spent a lifetime trying to get answers before I found him in 2009. I'm the oldest person I know of with chiari. Hopefully you will be spared that. I did read about a study where the oldest person who had the surgery was 86....can you imagine! And I thought I was old when I was diagnosed.



Ok, CrAzY day. And my phone wouldn’t work in the hospital. Dr. Heffez is very nice, upfront, doesn’t talk down, and willing to let me make a decision!

Baers and ssep tests were interesting. Don’t know the one from the other but one was a clicking noise wiin one side and white noise on the other of headphones. Took 4ever to get good readings. My brain stem didn’t wanna cooperate. The other was a bunch of leads they made my thumb twitch with the nerve stimulation, then they took readings of my right and left sides.

After that I headed to MRI, and sat in the machine for 30 mins. They pulled me out shot in the contrast and put me back in for another 15 mins.

Everything was sent to the neurologists in the department and to Dr. Heffez. We went to eat lunch and saw Dr. H. He asked some general questions. Told me I definitely had Chiari, 7mm. Then did a neuro exam…failed. surprise! Asked when I had my first mri. He was visibly upset that with my hyperreflexs and the herniation that my neuro didn’t send me on right away. Then he showed me the measurement film. Showed me his primary concern was brain stem crowding. Showed me the cine MRI. No flow, almost a total blockage…and I’m having a good headache day. Can’t even imagine the “flow” on the head bursting days.

He recommended surgery. My friend asked on a scale of 1-10 where is she…an 8. Then he said with the neuro signs added in it put me at the top of my class. Lol…I failed all that. Heks done over 300 Chiari surgeries in the last 5 years. And has a high success rate. My zipper is going to be little about 3 inches. And they are trying to schedule me for Monday after next.

I have prayed so much about this prayed God would bring me to all the right doctors and even that I would be a candidate. Such a relief.

Thanks for praying! Is it weird to say I’m excited?! Hope! What. A wonderful gift.

CM 7mm, crowded brain stem, hyperactive nervous system, and a great God who brought me here at just the right time.

Surgery is scheduled for the 28th.


Thanks for stopping by! It is crazy right now. The kids are tense. My husband is cool as a cucumber…too cool. I’m back and forth on fear and thankfulness. At times I feel abundantly alone. A couple frinds are amazingly supportive, while the majority questions that I even have a problem. You’ve all been there in one way or another. It’s hard when I see people literally roll their eyes because they simply have decided it is that I’m lazy, or not in so much pain as I make out. I hope they never have to walk a mile in my shoes…but it might do them some good.

Anyway, I can’t imagine months of this looming ahead. These next few days are enough for me, thank you very much. :slight_smile:

On a positive note my pain doctor visit today was such a boost. He knew Chiari was the problem but he needed to rule out cervicogenic possibilities. He explained that if it were anything other than Chiari I would feel grand. So he was relieved to know I have surgery scheduled already. He reminded me not to jump ship. To ride out this Chiari storm and the marriage storm as well. He said that headaches, especially constant, chronic ones affect everything about us. Mood. Coping ability. Sleep. Thought. And no one truly understands that tylenol doesn’t fix it.

He’s thinking they’ve caught me soon enough that I will see great improvement, but to give it a year.

I’m trying to get a design project done…hard to keep any level of concentration. Plus get my house in order…never thought I would “nest” before surgery. And trying to schedule when parents should come.

I’m trying to think of all the essentials to bring to the hospital. Is there a good list anywhere?

So to answer your question, my mind is running a mile a minute and getting nowhere. Hehe.

How are you doing?