Frustrations with inconsistent specialists

First, I would like to say I am glad to be part of this group. Although it is likely that our daughter has been having seizures for many years, there has only been diagnosis and increasing severity of her symptoms since February of this year.

Looking back, we know now that some of the issues that we were running into when she was in her late teens and early twenties were likely incidents of seizures and other complications of the cavernous malformations.

I spent some time reading discussions form this support group, a couple of hours crying, wishing I could ask questions and then requested membership.

My story is in my profile of course, but briefly my nearly 28 year old daughter has began having severe seizures. She is not responding to the medication well, and now that she is having both grand mal seizures and epileptic "focal" or "temporal" seizures ever increasing in severity and frequency, her condition has deteriorated drastically.

She sleeps on average 12-16 hours after the grand mal seizures, and the seizure medication she has chemotherapy type side effects.

She has been seen by every neurologist and neurosurgeon in two of the hospitals that serve the Denver area, all say surgery is not an option. However that is the only thing they agree on. They are so inconsistent with their observations and recommendations it is extremely frustrating. When they use the term "practicing medicine" I truly believe they meant situations like this. None of them really know what to do with our daughter's three rare conditions, and can't for the life of them figure out how someone so young can end of with 3 different rare conditions....these are 1. micro-valve prolapse, 2. protein c deficiency, 3. cavernous malformations on her skin and in her temporal lobe.

I look forward to getting to know everyone and I will try not to run on like this too often.

Thank you, Michelle (ASkulli is the nickname that my daughter created. It is short for ASkulliplus1 her first initial, her "skull" difficulties, and the plus 1 is for the daughter that she gave birth to and that her Dad and I are raising.)

Hi Michelle,
My heart goes out to you for you & your daughter.
Unfortunately, the "inconsistencies" among the medical communities are experienced far too often by the majority of 'us' & we often need to seek opinions & medical care outside our geographical areas.
I would strongly encourage you to seek a 2nd, 3rd, etc. opinion w/ renown experts mentioned throughout the forum until you are comfortable with the direction of care. Generally, you will need to send copies of your daughters medical records & current scans, but it's best to contact their offices directly for instructions of how to proceed.
My personal pt. experience has been w/Dr. Gary Steinberg @ Stanford & many years ago @ UCSF
Take care & know you & your family are not alone.
Best wishes.

Thank you for the input. We are just starting to look outside of the Denver area.

The more we lwarn I realize the more we need to learn.

Michelle, I think you should put some HHT Centers of Excellence on your list for opinions. I just read that protein C deficiency and other clotting disorders can be components of HHT:

HHT is a genetic condition that predisposes people to have multiple avms, as well as small vessel malformations in the fingers, toes, and lips (telangiectasias) and nosebleeds. For more information, see or our own HHT subgroup (click "Groups").