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Thread: Height?

  1. #16
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    I'm not sure I will find out soon. But Im pretty sure it's has to do nothing with the valves. I know one has cholesterol problems.

  2. #17
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    Quote Originally Posted by Kat3573 View Post
    I'm not sure I will find out soon. But Im pretty sure it's has to do nothing with the valves. I know one has cholesterol problems.
    Ask specifically about aortic dissection. That is associated with Marfans and often happens in the forties in these patients who are not aware they have Marfans.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #18
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    Somewhere in the universe that is the Spinecor thread, there is a testimonial about a mother in the hospital with her daughter recovering from fusion and then her husband is taken to the emergency room for an aortic rupture. Now we can't know that Marfans is in that family but we can strongly suspect it.

    Aortic dissection, aneurysm, rupture, etc. are completely avoidable. Knowledge is power. The lucky ones have warning like my daughters who may or may not have Marfans but I'm not taking any chances. That is the only good part about scoliosis.... we were alerted to the need for heart monitoring. If they have it and the heart problems then the scoliosis diagnosis will have literally saved their lives.

    I am not a doctor. But I know enough to suggest to you to have a medical geneticist assess you for the need for heart monitoring.

    I have five doctors consulting on my daughters:

    1. pediatrician
    2. opthamologist
    3. pediatric orthopedic surgeon
    4. pediatric cardiologist
    5. medical geneticist

    I know of no other way to figure out the Marfans situation. You need all of them.

    And don't expect agreement... Other than the eye guy who cleared my daughters of lens problems, two (cardiologist and geneticist) of the four think further heart monitoring is necessary because they can't rule Marfans out and two (pediatrician and orthopedic surgeon) don't think it is necessary because they don't think my kids have Marfans. And so we continue monitoring...

    Knowledge is power. It blows away fear.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #19
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    Hi Kat,

    There are 5 or 6 variants of Ehlers-Danlos, and several of them do not present with stretchy skin. There is a mild type (which I possibly have) known as the hypermobility type, that is considered essentially benign. If you google "hypermobility Brighton scale" you will find links that show how joint hypermobility is determined. I scored nearly the highest score and could do all the hyperflexible party tricks listed.

    As far as wouldn't the hospital tell your parents if they detected Marfans...Marfans would not be detected by any of the routine surgical or post-op testing that you likely had. It does not show up in urine or routine blood tests. It is simply not on the surgeon's radar when you are undergoing fusion surgery. So it is definitely something to ask about if you are worried at all about the characteristics you mention.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  5. #20
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    Me feeling scare :(

    Hey Pooka, I am patient of marfan syndrome..
    I am short sighted and many other features are present but i dont have aortic disorders or any other heart disorder.Before surgery my surgeon has taken my all tests but all were clear...
    Now.am feeling scare that will i have these disorders in future... ?
    I am more stronger than scoliosis. And I will not allow it to control my life.

  6. #21
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    Quote Originally Posted by fatimah View Post
    Hey Pooka, I am patient of marfan syndrome..
    I am short sighted and many other features are present but i dont have aortic disorders or any other heart disorder.Before surgery my surgeon has taken my all tests but all were clear...
    Now.am feeling scare that will i have these disorders in future... ?
    Hi Fatimah,

    There is no reason to be scared if you are informed. First of all, not all Marfans patients have the heart/vessel issues just like not all of them have scoliosis.

    How old are you?

    If you have a diagnosis of Marfans then I think the protocol is to start keeping track of the size of your aorta and other vessels. Measuring it one time may or may not be enough. People with the aortic complications generally have them in their forties but I am sure it is all over the map. Even if it is getting bigger, that doesn't mean you will need surgery. They put people on beta blockers long term which prevents the aortic enlargement as I understand it.

    Nobody needs to die any more from Marfan's related heart/vessel problems. Everything is fixable.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #22
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    This is weird. I can do both of those things with my hands AND I do have a slight leak in my mitral valve. My daughter was suspected of having Marfan's when she was an adolescent, so the doc did an echo and found no anomolies with her heart or aorta, so ruled it out. I am also taller than every female in my family, bar the scoliosis. My daughter is not tall, but very flexible like me. Her hands are also more willowy than mine and she has mild scoliosis. I believe my nephew was diagnosed with Marfan's. He's very tall and thin. But I'm not sure about the diagnosis. I'll have to ask my sister.

    With that said, you say, Sharon, that there is a genetic test for Marfan's? Perhaps I'll ask my PT what he thinks (only because he's the next person I see). He made a remark about how flexible my joints are. I can reach behind and touch my head with my left arm (the right shoulder is out of commission right now). I can also put my feet together in a sitting position and bring them all the way to my body with my knees still on the floor and lay forward with my head on the floor with arms outstretched. Hamstrings are extremely tight, though. Maybe I should talk to one of the docs about the test. I haven't had an echo in quite a few years. The leak was considered mild enough to be in the "normal" parameters, since the cardiologist didn't mention anything about it. My GP heard it and the cardio tech guy showed me the backflow on the dopplar during my echo.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  8. #23
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    Quote Originally Posted by rohrer01 View Post
    With that said, you say, Sharon, that there is a genetic test for Marfan's?
    Yes and as I recall it has a 0% false positive and ~10% false negative so not perfect there. The false negative makes it useless for the only purpose we would have for taking it... not having to do the echo cardiograms every few years until they are 30 and possibly beyond.

    I haven't had an echo in quite a few years. The leak was considered mild enough to be in the "normal" parameters, since the cardiologist didn't mention anything about it. My GP heard it and the cardio tech guy showed me the backflow on the dopplar during my echo.
    The valve leaks are one thing that probably won't kill you but the deaths are largely due to aortic aneurysm and rupture from dissection as far as I know. That is the main thing we are checking with the echos to my knowledge. The bottom line I am waiting to hear from the ped. cardio guy is always whether or not the aorta has enlarged. So far it has not but they have many years to go before we can tentatively rule out emergent Marfans on that score anyway. And actually, I am not aware of needing to know about Marfans UNLESS there is aortic enlargement. That's what kills people early and why Marfans is associated with a shortened lifespan. With careful monitoring of the aorta, nobody needs to die in their forties any more from this. My kids have now had two rounds of echos and we can't stop even though they are both normal and show no enlargement to date.

    These one-time echos on kids canNOT rule out emergent Marfans. They can help rule it in if the aorta is too large already. A one-time echo on someone older than 30 or so might go far to ruling out aortic issues associated with Marfans as far as I know.
    Last edited by Pooka1; 11-22-2012 at 04:48 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #24
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    Asked them and no it's not Aortic dissection

  10. #25
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    Quote Originally Posted by Kat3573 View Post
    Asked them and no it's not Aortic dissection
    Okay very good.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  11. #26
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    Yeah it makes me feel a Lot better. Sharon, can your daughters do sit ups? Is there anything they can't do? Or have problems doing something? Oh and how tall are they if you don't mind

  12. #27
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    Quote Originally Posted by Kat3573 View Post
    Yeah it makes me feel a Lot better. Sharon, can your daughters do sit ups? Is there anything they can't do? Or have problems doing something? Oh and how tall are they if you don't mind
    My daughters don't do much in the way of physical stuff. One jogs a bit. They are not sporty and their joints sometimes hurt if they do too much.

    I assume they are capable of doing sit-ups because they are only fused to L1.

    There is nothing they can't do to my knowledge except bend through the rib cage which of course is minimal in unfused folks.

    One is about 5' 10" and the other is about 5' 11".
    Last edited by Pooka1; 11-25-2012 at 10:31 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  13. #28
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    Wow I wish i was 5'10"! I'm barely 5'6"

  14. #29
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    Quote Originally Posted by Kat3573 View Post
    Wow I wish i was 5'10"! I'm barely 5'6"
    They are identical twins and though I think they lot quite different, people always stare when they they see two very tall girls who look alike walking around the mall. Little kids especially stare which is kind of comical. LOL
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #30
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    Hahahah that so cute/funny!

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