Comments on: Just a Morphish Marfan

By: Diana Driscoll

Diana Driscoll — Wed, 14 Jul 2010 03:45:17 +0000

Sounds great, and please keep in touch! Dr. Diana

By: Amy

Amy — Wed, 14 Jul 2010 00:55:26 +0000

Hey Emily,
I’m so sorry to hear that you were disappointed with Dr. Rozen. I think people act like he is some kind of miracle worker, but he is not. Unfortunately, he doesn’t have a solution for us.He has a few different things for us to try, but he never made me any promises. He also doesn’t have the funding that he would need to find a solution, and I do think that he would be able to make some progress if given the opportunity.
The future is not positive for people with NDPH, from a medical standpoint. Once you have exhausted finding all the possible causes, it is simply a matter of pain management. And I think that it takes years for us to get to that point, and the point of accepting it.
I hope that you find a treatment that is of some help soon. Please hang in there. You sound so frustrated, and I understand why. Check in soon and let me know how you are.
Amy

By: Amy

Amy — Wed, 14 Jul 2010 00:23:22 +0000

Hi Vanessa, sorry for such a late reply. I hope that you are doing better. I’m glad you found me here, but am sorry that you are back in pain. You are certainly not alone.
There are still a lot of ups and downs for me, but after 5 years, I am mostly trying to get back to living life as best I can and honestly, I try to ignore the situation. I know that this may not be the best plan, but it is working for me now! The pain is there, I just don’t let myself get upset about it. It still gets out of control from time to time, but the day to day is tolerable for the most part.
I hope you are having a pain free day and please keep us updated on your progress!

By: Amy

Amy — Wed, 14 Jul 2010 00:17:39 +0000

That was scary, Jal! I’m happy to say I cannot do that. Close though!

By: Amy

Amy — Wed, 14 Jul 2010 00:15:09 +0000

Thank you Dr. Diana! I will try your advice and let you know how it goes. I may repost your comment in a spot where more people can find it, if that is okay with you! Solutions tend to be different for everyone, and we all just looking for our big break- from pain. Thanks again.

By: Diana Driscoll

Diana Driscoll — Sat, 03 Jul 2010 02:04:10 +0000

Hi Amy,
Love the moxie, girl! Keep it up! I have the “MASS” phenotype (I have most of the characteristics of a morph, but possibly a different gene or mutation). My blood is at the connective tissue lab right now.
Meanwhile, I think I can help you with your headaches. (And I’m a therapeutic optometrist who has written and spoken about this condition, so you’re getting some good advice, here. )
We are prone to the dural ectasias as described above and there are two things you can do immediately to help. First, try wearing a soft cervical collar at night (it helps prevent the kinking of our necks and allows the CSF to flow out of our heads more naturally). Assuming that helps, ask your doc for a trial of Diamox (acetazolamide). I’d start with 250mg at night, then 125mg in the morning and again after lunch. If a build up of CSF pressure is the cause of your headaches (yes, I’m willing to take that bet), you’ll know the first day. Headache gone, that fast.
I’m lucky enough to have kids to experiment on also (ha), and my 12 year old son had pressure headaches (they radiate to the back of your head, and sometimes down your neck in a “wing” pattern) for 3 months, daily – gone after one night with a collar and Diamox.
Talk to your doctor, but we are on the cutting edge of science here, so please keep looking for a doctor until you find one willing to listen and try…. It’s WELL worth it!

All the best,
Dr. Diana

By: emily

emily — Sat, 26 Jun 2010 02:42:40 +0000

July 2nd will be my 4-year anniversary with ndph. i laughed when i read this post, as i have laughed when reading most blogs mentioning dr. rozen. he seems to have a script for his ndph patients as it seems he tells us all pretty much the same things. i am of average build, normal height and weight, but i do have a long neck. my pain seems to stem from my neck and the base of my skull, and dr. rozen did tell me that women with long necks are more prone to these headaches because of their hypermobility. in my case, it does seem to make sense, but being long all over seems less directly related to head pain.

i’d also just like to say how excited i was to meet dr. rozen. he has such a wonderful reputation, and when you meet him, it’s quite clear that he knows all about this disease that so few dr.s – even neurologists – know anything about, however i have been so disappointed by him. i’ve been a patient for nearly a year, and there has been no improvement whatsoever. i know that my case is considered highly treatment resistant, but i get so frustrated with him. i felt as if he were my last hope for any kind of “cure.” he clearly doesn’t believe in giving you a better quality of life if it becomes clear that preventative medications aren’t going to work. i had such high hopes for him, and i feel i should’ve known better after the string of nightmarishly bad dr.s i’ve seen, but regrettably, i’ve been let down again. i do believe he could be successful in helping people who are less treatment resistant, but i wish when he was dealing with me, he’d be able to do more than look confused.

good luck all!

By: Jal

Jal — Thu, 20 May 2010 18:05:28 +0000

Still sounds pretty amazing to me… Can you for instance do this?

At any rate, thanks a lot for running a most timely and informative blog

By: Amy

Amy — Thu, 20 May 2010 11:54:03 +0000

Nah, lol, it’s not that amazing!

By: Jal

Jal — Sun, 09 May 2010 20:21:59 +0000

Dear Caitlin,

Could you please post a few pictures somewhere where you stretch your neck to the limit? It sounds incredible