Back from NY----Dr. Milhorat/Bolognese

[Guest Julia59]

What a crazy trip!

9 hour drive for my husband which was very rough considering he gets very sleepy when driving long distances. But believe me he woke up when we hit the NJ traffic taking us to Long Island. Oh my God, it was like trying to play one of those video games---people in their cars weaving in and out of traffic all over the place---it was the craziest thing I ever saw.

WE were not able to See the City because I could not handle the heat. so most of our time was spent at hospital doing my testing--MRI---C-Scan on 7-20. Then the next day, 7/21, spent at The Chiari Institute only to find out we would have to meet with Dr. Bolognese at the hospital. (North Shore University Hospital). He was stuck in surgery with a complication----all ended up coming out well for the patient.

Anyway, we finally hooked up with him in the conference room. He spent about an hour and a half with us---My husband and I.

He confirmed what Dr. Heffez said. I do have Chiari and the cervical stenosis. But apparently I have something else going on. Cervical/Cranial instability. Part of my first cervical vertebrae looks like it's rubbing on my brain stem and irratating things.

Also, he thinks I DO HAVE JOINT HYPER MOBILITY---possible EDS for obvious reasons.

Here's the thing----------I have too much going on to make a decision for surgery. Which direction do we go? He was honest-----too many gray area's on which could be causing my symptoms. All four things can cause ANS disturbance---Cervical spinal stenosis, Chiari, Cervical/Cranial Instability, EDS.

My Chiari is without herniation, and there is just basically pressure on the brain stem. My cervical Stenosis is moderate throughout the whole cervical area. It could be a combo of all four area's--------who the heck know's.

Anyway, he said the surgery for the cranial/cervical instability is pretty invasive. I would never be able to look up or down again! He said i'm somewhat functional now---and it would be a trade off---and possibly a set of new undesirable symptoms. As time goes on I will probably get worse with no treatment at all, so we are going to try less invasive measures first. Traction....and possible later, a special vest with a neck brace that supports my neck. The traction will start with 45 minutes a day.

I will call Dr. Bolognese in NY on a conference call to let him know where I stand with POTS symptoms and other central nervous system symptoms in 30 days from the start of traction. He does not want to schedule for chiari surgery when he is not certain it will help my symptoms----epecially with all the other problems which may or may not be the cause of my symptoms.

He respects the fact that I can not lead a normal life now---but he said it could get even worse if they do surgery and it doesn't help----and then adds even more symptoms on top of that. He told me to work with Dr. Grubb on all these issues----treatment of symptoms. Well I think i'm the best I could be for now. I don't really think there is much we can do for my other symptoms---fatigue, heat intolerance, balance.

Dr. Bolognese said the chiari----cervical/cranial instability can cause irregular HR, PVC's, and tachycardia also. He said they would have to get pretty bad to justify surgery. Basically I would need to be near wheel chair status before haivng surgery. I agree with him 100%! Cutting into the skull or neck is nothing to be taken lightly. However, he is not ruling out surgery----because he just doesn't know where this instability will go.

What to do? What to do? All we can do is wait and see what time brings.

He also said the chemicals that I was exposed to could just add more fuel to the fire. He game me the name of a Doc there at the Chiari Institute that can help me find a place to get the right testing done.

He was very very nice, and funny too! He was also very validating and took everything very serious. I feel my trip to NY was not a waste----but it was very very tiring.

Also, my husband and I did manage to have a little fun in (Long Island) NY. We ate at the best Italian restaurant! I will go back there just for that!

Julie :0)

[Ernie]

Hi Julia,

I am so glad you had a "nice" visit. You sound very satisfied with him. I understand why you would want to wait for a surgery. I would do the same thing.

Thanks for sharing your visit. You could have been a doctor!

You were right on the dot. You have another health issue.

Hope you recuperate from your trip fast. Say hi to Ron from me.

Ernie

[MightyMouse]

Hi Julia, welcome to my world of driving I figure I get good training for me reflexes on a daily basis.

Glad that you at least got answers at your visit, even if they weren't necessarily what you wanted to hear. Hope that the traction helps you.

Nina

[Guest Julia59]

Thank's Ernie and Nina,

It sure is a lot to drink in...........................

I'm just glad this doctor was looking at ALL the angles before deciding to randomly cut me open and see if the surgery helps the symptoms without trying something else more conservitive first.

WE just don't know where my symptoms are stemming from. The surgery suggested for cervical/cranial instability is so invasive----so it would definately not be an easy fix. He knows that all my issues can make a person pretty sick----but which issue is it?---Is it all---or maybe just one of the issues? I would be pretty lucky to have one surgery fix my on going physical problems.

I'm just thankful that I can function somewhat, and I can take a time out to think all this through. It's probably a good thing Dr. Heffez added the titanium plate in my neck, because I may have had a real problem if I DO have some form of EDS.

But then again---it could also complicate things on the levels above and below the plate.

The neuro nurse practioner and Dr. Bolognese think I definately have joint hypermobility----or a form of EDS. I will go for further testing on that issue to rule it out. Probably in Michigan for that kind of testing............

A lot to think about......

Julie