Awesome appointment today!

General
1

So, I went to a rheumatologist today. A member on this site actually recommended him to me, she said he knew some stuff about Chiari. He does a lot of research into fibromyalgia, but I had watched a YouTube video of a presentation he did, and I was impressed. Here's the video:

http://www.youtube.com/watch?v=Ei8LbUDkQno

His name is Dr. Andrew Holman, and he's AMAZING. Not only was he familiar with Chiari, he's very familiar with dysautonomia and hypermobility.

So, yes, now I am diagnosed with hypermobility, and dysautonomia.

He's put in an order for the positional cervical cord compression MRI. He has found through his research and studies that intermittent compression of the cervical spinal cord can cause dysautonomia in patients with hypermobility. And the best part, if that's what my symptoms are from, 85% of patients can be helped with physical therapy.

He even knew what Chiari 0 was. In fact, he said the biggest problem with Chiari was how much crowding there was in the foramen magnum, not the length of the herniation. He also said it was too bad there was not more information out there about Chiari.

The positional cervical cord compression MRI uses flexion and extension to see if the spinal cord is being compressed during those movements. Here is a really great article he wrote regarding this:

http://www.positionalcordcompression.com/images/PacificRheumAssoc_PC3_2012.pdf

Currently, the PC3 MRI is being done in the Seattle area, Oregon, and Wisconsin. Here's his website:

http://www.positionalcordcompression.com/home.html

Just so you know, I'm not being paid for these endorsements, but I am SO EXCITED TO FIND SOMEONE WHO TALKS MY LANGUAGE AND LOVES TO RESEARCH LIKE I DO!!!!!!!!!!!!

He talked to me for almost a full hour. If you know anyone struggling with fibromyalgia, dysautonomia, Chiari, or hypermobility in the Seattle area, I would recommend him in a heart beat. The only sad side is that he is retiring this summer :( So if you're interested in seeing him, I'd call him right away.

He also talked about putting out a hypermobility handbook. I asked him about putting out a Chiari handbook while he was at it :)

Between the video and the article, it really explains a lot of what he told me today. The office manager, Lori, is lovely to talk to. Even if you are not in this area, if you have questions you think they can answer, I'd encourage you to call them. It's just the two of them in the office, and they are like no other doctor or nurse I've ever spoken with...really really great :)

If you have dysautonomia, I would highly encourage you to read the article.

Take care,

Mandy

2

Hi.. So happy to hear that you had a good experience!! Please keep us updated on how things are going.

3

Just finished watching Dr. Holmans video. He does a great job explaining everything. Love that you posted it. Glad your Dr appointment was awesome for you.

4

I was excited to see your post, but not so excited to see he may not be available for consult even if I traveled. I know you mentioned it in your post, but this made it more real I guess lol This message is on the homepage of his practice. Unfortunately, the docs I have seen so far are not that willing to take advice or guidance from me lol STILL DOCTOR SHOPPING! Maybe Ill call Monday, but not sure Ill be able to afford to travel before he retires :frowning:



Announcement from Andrew J. Holman, MD



After 20 years, I am retiring from Pacific Rheumatology Associates and closing my Renton, WA, office in late June, 2013. My most sincere thanks go out to all of my patients for allowing me the pleasure and priviledge of caring for your rheumatology needs. My gratitude obviously also extends to the most capable and kindest of office support that I could ever have hoped to receive, especially from Lori Oberstar, LPN. Many thanks.



Through Pacific Rheumatology Research and Inmedix (Inmedix.com), I will continue my research in fibromyalgia, PC3 (positional cervical cord compression), hypermobility syndromes, and defining how the autonomic nervous system - measured by heart rate variability (HRV) - influences expression and treatment response of autoimmune diseases, like RA, SLE, etc. Eventually, I may rent some space locally to see a few consultations. However, in the near term, I have a few writing projects…



Updates of my status and limited availability will be provided here. And, although I cannot provide compregensive advice through email, I can be reached at ■■■■■■■■■■■■■■■■■■.

5

Does anyone know if Dr. Tew knows much about the positional cervical cord compression? I’m going to see him in the next couple of months.
Latrell

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That’s so exciting!I am very interested in this research,so glad to see that Dr. Holman is looking at the whole picture finally someone is taking a interest in us.His lecture was amazing,so very informative?My NS was mentioned as one of the attending Dr.s Dr. Rosner is in the N.C.area,he has been trying to help patients for some number of years now,and is very misunderstood.The others are pretty much behind his expertiese heis ahead of physicians here.We need Dr.s like him and Dr.Holman to finally be heard.They are a blessing to chiarians who are so lost in the medical community,just so pleased to see this,wonderful!!I hope we will keep this kind of info.going on this site.

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I need to find a rheumatologist in VA that “gets it”. No one will even see me once they hear the word Chiari. I may as well have Leprosy!