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MASTOCYTOSIS & AORTIC ANEURYSM STUDY AT HARVARD (Read 14203 times)
redbird
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Re: MASTOCYTOSIS & AORTIC ANEURYSM STUDY AT HARVARD
Reply #15 - 07/04/11 at 04:43:03
 
OHHHH Joan I was at that conference..did I get to meet you??  you are correct there was a family out of Denver area that had numerous family members with masto..their children and several aunts and uncles. I may still have some info on a colorado person there but will have to look..
in regard to families and I speak with no knowledge medical however several members of our masto community have sons and daughters that have it as well...I know this is a debate in the medical system however it does and has happened

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Joan
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Re: MASTOCYTOSIS & AORTIC ANEURYSM STUDY AT HARVARD
Reply #16 - 07/04/11 at 05:33:03
 
The support group meeting that I went to was in Colorado Springs in 2008.  Although I'd been pretty ill for 16 years, I had just been diagnosed a few months before.  Dr. Scot Lewey spoke at that meeting.

It wouldn't surprise me if those people have been at other meetings, especially with 3 diagnosed children!  Hope they all outgrow it!
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Jenlwel
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Re: MASTOCYTOSIS & AORTIC ANEURYSM STUDY AT HARVARD
Reply #17 - 07/04/11 at 07:48:43
 
Lisa,
This connection between aortic annerysm and MCD is interesting. I was diagnosed with an asending aortic annerysm about a year ago. They put me on beta blockers, which made me feel awful, so I discontinued. Now, my cardiologist is just monorting it.
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Lisa
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Re: MASTOCYTOSIS & AORTIC ANEURYSM STUDY AT HARVARD
Reply #18 - 07/04/11 at 11:28:43
 
Hi Jen!!

This is precisely what these doctors suspect, that for those of us with masto this could allow for us to have vascular problems that makes our blood vessels weaker and thus more prone for aneurysms.  Or,  it could make it that our aneurysms are thus weaker if we have masto.  There's no way to know which came first here, the proverbial chicken or egg.  It's a very difficult situation to judge for there are no prior patients and there is no prior research. WE ARE THE FIRST AND THIS IS THE FIRST PROJECT!!    

This is why it's very important that we participate.  

Yet, what is more important here, Jen is that we patients NEED HELP!!   Due to the fact that my case is the very first known case, and yet has not yet been written up, other doctors don't have any way to judge this.  Our cardiologists, angiologists, and thoracic surgeons don't have any way to know what role our masto has here, be it MCAD or SM or any other form.

I'm MCAD, Jen, but it doesn't matter whether we are MCAD or SM for what is going on here is that the excessive mediator release is going on within our aortas.  Mast cells have been seen to be involved with aortic aneurysms and the recent research coming out proves to have not only tryptase involved but also chymase and these mediators are making our aneurysms weaker.  Yet, again, was the aneurysm produced because our vascular system is made weaker due to the mediator release, or is it that the mediator release within the aneurysm itself is the issue here?   This is something that is going to take time to know.

But in your specific case, which is what I was also undergoing 2 years ago is that my doctor was in way over her head for she had no way to know what influence my masto had with my ascending aortic aneurysm.  It was 4.6 cm when we found it and 6 months later it was 5.0cm due to the episodes of hypertension while in anaphylaxis.  The disease had come out of hiding and we didn't know it was masto and I was undergoing 3 and 4 hour long episodes of anaphylaxis where my pressure was constantly raised and this expanded my aneurysm to the point that it was dangerous!  It reached 5.1cm a year later.  

My doctors, however, thought that I was in the clear and she openly said to me Lisa, I don't think I'll ever have to operate you!!   That with my aneurysm at 5.1cm!!    If I had not run after Dr. Basson and stayed with my angiologist's opinion, I would have died!  Neither she nor I have any doubts about it!  I feel that I am more at fault than she was in that I was working with a good doctor, but I didn't recognize that I was giving up MY responsibility in not wanting to face the reality of my case and that it was just too rare for her to judge properly!  She is not a highly qualified doctor in spite of the fact that she has an excellent reputation as a doctor.  She's taken excellent care of me post-op and pre-op but she couldn't make the calls and if I had stayed in my home town and operated at our hospital, the anesthesiologists could not have handled me either!  I needed a LARGE hospital which SPECIALISES in these surgeries and THIS is where I ended up going and those doctors there took the very best of care and kept me safe during this surgery!  I would have died in the hands of my city's hospital - nobody doubts this, especially my angiologist!

Research has come out that patients with a family history of ascending aneurysms need to operate now when the aneurysm is 4.5cm in size!!  I was 6 cm past the point of surgery!!  Dr. Basson was in a constant state of worry with me for had I been his patient he would have whisked me into surgery within about 3 months but instead I had to go seeking for surgeons here in Brazil!  I had some refuse me as a patient for they were scared to give me a chance to fight for my life!!   With help I finally found the right doctors at the right hospital to operate me and my life started anew on June 9th last year!!!    It was a close call for I could have had my aorta go with any one of my anaphylactic episodes for they ALL caused hypertension.

So, this is very serious business, Jen, for as you are learning, there is a fine line that our doctors must juggle in that you must know when is enough to allow the aneurysm to grow, especially an ascending aortic aneurysm.

So this is why I recommend, Jen, that you tell your doctor of this study, but also ask him to contact Dr. Seidman and ask for her to help him understand your situation.  She can help him keep a close eye upon you and keep you safe!!!

I hope this helps!


Lisa

Let me know if you want to join the study, Jen!  I'll be happy to send you the files for the project

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Donīt forget, there is so much more to life than being sick!
 
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Jenlwel
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Re: MASTOCYTOSIS & AORTIC ANEURYSM STUDY AT HARVARD
Reply #19 - 07/04/11 at 17:26:58
 
Lisa,
Thank you for your response. Please send the information about the study.
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Lisa
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Re: MASTOCYTOSIS & AORTIC ANEURYSM STUDY AT HARVARD
Reply #20 - 07/05/11 at 09:30:52
 
Hey Jen, can you PM me your email?  I'll send it tonight if I can!

Thanks!

Lisa
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Donīt forget, there is so much more to life than being sick!
 
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