Cci/chiari Doc Appt Today And Tomorrow

[mkoven]

Hi,

We're headed out this morning for two days of appointments with Dr. Heffez (mri's today, docs tomorrow). I'm hoping he will agree that a conservative wait-and-see approach makes sense. I have to say that I am now convinced that head position affects many of my numerous symptoms-- but that doesn't mean I'm ready to get my head fused to my neck!!!

[MightyMouse]

As a patient of his, I promise you he IS conservative. Surgery is a last resort. Good luck with your appointments, and I'm going to bet you that you'll be leaving their with a neck brace if you don't already have one. Please give Dr. Dan my regards.

[Maxine]

He's conservative, but also understands the seriousness of Chiari related conditions. He did not think I had CCI based on what he could see on MRIs, although two docs, one orthopedic surgeon, and one NSG thought I do. He wasn't dismissive when I told him I have excessive movement at the cervical/cranial junction though. He did not rule the CCI completely out. I just think that at the time from 2003 to 2005 when I saw him last that he wasn't fully versed on EDS anf CCI. It will be interesting to see how he feels about it now.

CCI is difficult to see on MRIs when it's rotary, and my orthopedic surgeon said many NSGs will be dismissive that it exists. Both the NIH geneticist and the geneticist who is my EDS specialist said I have CCI also. Even with thier credentials, some NSGs still refuse to look outside the box.

As I have said before, my MRIs show abnormalities near c1-c2 and the pannus growth, but NSGs have blown it off, and not taken any steps to investigate it further.

Now I'm having terrible spasms on the left side of my neck from the stress of the CCI, as my muscles working so hard to hold my head in place. The pain is so deep, and I think it's also affecting my ligamants, and tendons------------the pain is also radiating into the base my skull and around my ear. My left arm is affected more then usual, and it's difficult to grip a large glass without dropping it.

I'm thinking about another visit to Dr. Heffez. It's about a 5 hour drive to Chicago, then another hour or so to Milwaukee for us. The worst part it the Chicago traffic, but we've experienced it several times, so it's not a big deal--------just annoying.

Dr. Heffez has discussed doing a full laminectomy/fusion for the congenital cervical spine stenosis, but at the time I was still trying to get full validation of the CCI. I knew I had it due to slight subluxating in the area, but didn't want to have a fusion from c-3 and down knowing it would probably cause the CCI to get wose in the c1-2 area with the area below it being fused.

Dr. Heffez is also concerned about the enlarged vertebral artery pressing on brain stem. This was discovered in May 2002 a month before he did my diskectomy fusion of c5, 6, and 7. If I would have listened to the very ignorant and arrogant NSG I saw where I live, and not forwarded my MRI films to Dr. Heffez I could have been paralized from the neck down. The herniations between c 5-6, and 6-7 were severely herniated.

He has never pressured me to have surgery, but he suggested it strongly atr the time I saw him in 2002 because I had less the 5mm of the space needed for my spinal cord on c5-6, and he said there wasn't much room for error. He said if I had a fender bender accident it could paralize me. He suggested a soft cervical collar before I had my surgery.

On a funny note, I still remember what an older lady said to me the first time I put it on and walked out of the pharmacy. There was another older person stepping down off the curb, and I went to assist them. The other lady ran over and said, "you can't help her, your crippled"! I was stunned----but also amused.

Maxine :0)

Good luck at your appointments

[mjan]

Hello ladies!!

So this Dr Heffez is in Milwaukee?? I AM IN MILWAUKEE!!..WELCOME!!

Where is his office? Is he in a big practice or by himself?

Take care.. good luck with your appts.

Jan

[MightyMouse]

Jan, you do understand that he's a neurosurgeon and not an autonomic doc, yes? Those of us that have seen him all have issues with hypermobile joints, dislocations, or as in my case, a prior spinal trauma which included a ruptured disc and subsequent bony scarring inside my spinal canal.

Nina

Hello ladies!!

So this Dr Heffez is in Milwaukee?? I AM IN MILWAUKEE!!..WELCOME!!

Where is his office? Is he in a big practice or by himself?

Take care.. good luck with your appts.

Jan

[Maxine]

One of the main reasons I chose Dr. Heffez was because he does have some knowledge of ANS issues. He's not an ANS doctor, and as Nina said he's a NSG. However, I wanted a NSG that took my ANS problems seriously, as this is very important when going into a surgical situation.

Dr. Heffez is just aware of POTS and other forms of ANS dysfunction as it can be secondary to spine and brain stem compression, so he sees many patinets who have ANS issues.

When I went for my initial visit I also saw a neurologist also, and he also had a good understanding of the ANS, but still not a specialist with it in any sense.

When I had my surgery the nurses in ICU knew how to handle my ANS issues because they were informed in advance.

Maxine :0)

[mkoven]

so the upshot is he doesn't really believe in cranial-cervical instability and thinks the treatment for it is too radical except in extreme cases. he did confirm my small chiari, but could show where the cerebellar tonsils are literally sitting inside the foramen magnum. I also have a tethered cord. My herniated c5-c6 also pushes a little on the spinal canal, esp on flexion. He said any one of these alone or in combination could cause my symptoms. But with all my issues--eds, med intolerances, etc., he is not inclined to operate. if the neck brace helps, great-- new prescription for a comfier one.

not clear he wants to help me manage my symptoms, but would be available if I ever got worse. It does seem that these issues are more complicated when one throws in weak connective tissue into the picture.

not sure how to reconcile this with waht the previous nsg said. i don't want surgery, but i'm also tired of feeling so bad and having weird conditions that people don't know how to treat.