Hi...we do have a few members that went to Dr Heffez...shanmomof3 and n40066....and a couple of others....send them a note and I am sure they will share what they know about this dr.
Soccero - Molly...had a redo by Dr H...so any of these members can tell u about this dr.
"selma"
Actually, we drove up to Milwaukee as a family vacation this summer just so that I could see Dr. Heffez. He said that I'm not a candidate for surgery at this time, for which I was glad. I told him that I was only there to see if Chiari could be what's causing all of my problems and wasn't ready for surgery anyway, so we were on the same page. He said I may need further care with him in the future, but not now. That told me that he's not surgery happy just for the heck of it. So that's good. The staff is very pleasant and everything is professional enough. My impression of Dr. Heffez was that he's probably a very good surgeon. He was willing to answer questions and didn't seem to be in a hurry to get me out the door. He's more business and not extremely personable, or I didn't get that impression during my time with him. He may be more so if you're facing surgery. The only thing that bothered me was when I asked him about my CSF flow and he said something like he didn't even consider that or look at that or something to that effect. I thought that was a major thing. So that question went unanswered and I now wish I'd pushed it a little further. In short, if you're thinking of going to him, I would recommend it if you can manage it. Good luck.
hi,
i actually get alot of twitchin.. all over.. eyeslids, checks, temples, arms, fingers, bum cheeks - everywhere.. if im relaxin, tired or even wen i get excited.. i actually thought it was down to my seizures but maybe it isnt.. interestin though. im findin out all kinds bein on this forum.
selma - your right about the friends knowin how you truly look - jus before the kids broke from school - i was havin a very bad week. i walked into the playground, past a few parents, and stood by the fence - within minutes - one parent i normally talk to came over - asked if i was ok - at the point i couldnt respond i jus stared at her then bosh - fell to the floor shakin. luckily she shouted her partner n he caught me before i hit the floor. how embrassin ay - i could hav waited til the bell had gone - i must hav scared half the people in their - thing is though cus im semi conscous i can see people starin n its that i dont like as it makes me feel like a weirdo.. i wish i could control my signs n symptoms - god if only ay. i always say im ok, i try n hide alot of it as i hate feelin like its always about me as its not.. i hate the attention. and i hate people fussin! makes me feel im useless..
the school hav told me though in september they guna look about doin an awareness course for parents.. me other friend that was at the school said as soon as she saw me that mornin she commented to one of the other parents n said i didnt look right.. i told her if she sees me like that again - watch the girls for me.. as thats wat i worry about! as it can jus come on, and im findin with all this pain its bein more n more.
kricklekrin - i know what ya mean about havin to laugh about things now - i do too - ya jus gotta ent ya. and ive jus gotta say OMG - my teeth hurt too although i put them down to cus me head hurts.
I'm sure people really do care, but they just don't understand. Unless you suddenly drop or fall into something they don't see the many symptoms of Chiari.
And then, they may think you've been drinking!
When I stumble in front of my family they begin to giggle, especially my children. This used to upset me, but now I laugh with them. I find that laughing at my symptoms helps. Even though many of them are not laughable, but painful. The painful symptoms are the ones they don't see.
I'm also learning that talking about all my symptoms with doctors just gives them the opportunity to make you feel crazy. Especially if the doctor is not a Chiari specialist.
The feeling crazy may just be the insecurities about the many strange symptoms of Chiari.
My most recent symptoms: It feels like someone has their hand inside my head pushing my brain towards my face. My front teeth hurt! I'm waiting for them to start shooting out of my mouth one at a time...
At this time I'm contemplating surgery. Very scared..... Anyone here see Dr. Dan Hefezz?
I know what you mean about "I'm just fine" because people care, but they really don't want to hear it. If you go beyond that you can tell that people's attention begins to wander. What I want to say is, "Well, as long as I take my meds it helps control the twitches and spasms and tremors and even the ringing in my ears, although I now have to take meds for my stomach because the meds for the twitches, etc. are killing my gut and I have diarrhea and nausea so bad I can't stand it. When I ride in the boat and the wind whips my face, afterward it feels like spiders are crawling all over my face. It wears off eventually. Sometimes I feel like they're crawling all over my head. And I can't swallow very well. Have to really concentrate on it. And now my tongue feels out of control. It just kind of flops around at times. And my head hurts, and my neck hurts....." well, I'll stop there. But that's what I want to yell sometimes, especially at doctors. I asked my NL about my tongue and she said she didn't know, never been asked that. How's that for professional behavior. There was no, "I'll try to find out." Anyway, ranting. I'll stop.
I have eys, nose and facial muscle twitching, but thank goodness it is only if I squint. It is as if there is a fine line there, because it doesn't have to be a full squint. I look like a bunny rabbit with my nose and it is uncontrollable. You know what a neurosurgeon told me at a top knotch university? He told me I was making myself do that. Sure, I love doing that to myself! LOL. I have noticed now, since I am logging pain and symptoms, that my legs will out of the blue jump, maybe up to 10 times a day. They have a mind of their own. Sometimes my arms will, but more often it is my legs.