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Re: [Rediscovering Hope within HHT ] Young's procedure

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  • maryannl66@windstream.net
    Hi Bob, I don t know if I sent this to you before or not, but here s what I have saved in my documents. I copied and pasted it, and this is another reason
    Message 1 of 11 , Jul 13, 2011
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      Hi Bob, I don't know if I sent this to you before or not, but here's what I have saved in my documents. I copied and pasted it, and this is another reason that I decided to have the Young Procedure done....can't wait. Mary Ann



      Young’s Procedure

      The surgical procedure involves closure of the nasal cavity affected with atrophic rhinitis by creating mucocutaneous flaps. These flaps are sutured together in two layers: first the mucosal layer then the skin layer. The nasal cavity is kept closed for a period time ranging from nine months to forever. If, based on an examination, the crusts have disappeared, a revision surgery can be performed and the nasal cavity is reopened. The theory behind Young’s Procedure is that the closed nasal cavity has time to heal.

      Although HHT can manifest in a variety of ways, 90% of patients experience nosebleeds (epistaxis) that can range from mild to severe. Epistaxis severity determines the appropriate treatment (i.e., ointments, nasal packs, surgery). According to the Utah HHT Center, the Young’s Procedure is not indicated for HHT patients with mild to moderate nosebleeds, or even those with severe nosebleeds unless other less invasive treatment options have been tried and have not worked. But given current treatment options for nosebleeds in HHT patients, the Young’s Procedure is an option for select HHT patients. Ron Johnson is eager to share his story (written in 2006) with others who are affected by this disorder.





      Hi Liz,
      Youngs procedure was first performed in the fifties by Dr Young hence the term at the Sheffield Hallamshire Hospital in th UK it is a full nasal closure where flaps of skin are cut inside the nose and stitched together like a camera shutter to prevent air going thro the nose which causes nosebleeds. I had it done2 years ago and not 1 single bleed since before I was having regular blood transfusions to replace blood loss thro nosebleeds disadvantages you can only breathe thro the mouth and sort of change the way you eat to compensate you still sneeze.If you are experiencing serious nosebleeds and require transfusions then I would recomend it.My blood count before the procedure was about 5-6 it is now 12. Also a specialist in the field of HHT a Dr Valerie Lund at the London ENT wrote a paper on the subject and stated that all the case studies of people having Youngs Procedure reported a 100% success rate



      Bob, the above message from "Liz", is one that I got from a support group in the United Kingdom.





      ----- Original Message -----
      From: robert ware
      To: rediscoveringhopewithinhht@yahoogroups.com
      Sent: Wednesday, July 13, 2011 9:43 PM
      Subject: Re: [Rediscovering Hope within HHT ] Young's procedure



      Thanks for the reply Pat. I do use Prep H on a daily basis and I do try to get them on the bleeders. Most of the bad ones are farther back in the nose to the point that they are not reachable with the Prep H, or Phenylephrine HCL. Rarely they are and both methods are good to go. Just getting there is my major problem. I have what seems to be this one heavy bleeder that has been a gusher since september of last year. I been getting 3 units of blood ever 3 weeks, more or less. I'm getting 3 units tomorrow and this time it was only 2 weeks ago. I do watch all the triggers that I'm aware of which are most of the similar ones for all of us. I don't want to have any procedures done but I'm getting frustrated and you know what stress will do to you. I use Y.P. and Amicar and they both help sometimes. I hope that stem cell can one day alleviate the bleeding.
      Thanks again Pat.

      Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use
      .



      [Non-text portions of this message have been removed]
    • robert ware
      Thank you again Maryann for taking out from your time to educate me. I really appreciate it. I m hoping to hear some of the negatives also, if there are any.
      Message 2 of 11 , Jul 14, 2011
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        Thank you again Maryann for taking out from your time to educate me. I really appreciate it. I'm hoping to hear some of the negatives also, if there are any. Just having anything done to my nose scares the heck out of me. Although the good news is enticing. I don't know if you read Pat's comments which also is very sound advice and I respect her opinion.  She. doesn't recommend any procedure for herself. She has a regimen that seems to work great for her and I feel has also helped me at various times.
        Thanks you and I hope your husband gets better soon,

        --- On Wed, 7/13/11, maryannl66@... <maryannl66@...> wrote:

        From: maryannl66@... <maryannl66@...>
        Subject: Re: [Rediscovering Hope within HHT ] Young's procedure
        To: rediscoveringhopewithinhht@yahoogroups.com
        Date: Wednesday, July 13, 2011, 10:12 PM
















         









        Hi Bob, I don't know if I sent this to you before or not, but here's what I have saved in my documents. I copied and pasted it, and this is another reason that I decided to have the Young Procedure done....can't wait. Mary Ann



        Young’s Procedure



        The surgical procedure involves closure of the nasal cavity affected with atrophic rhinitis by creating mucocutaneous flaps. These flaps are sutured together in two layers: first the mucosal layer then the skin layer. The nasal cavity is kept closed for a period time ranging from nine months to forever. If, based on an examination, the crusts have disappeared, a revision surgery can be performed and the nasal cavity is reopened. The theory behind Young’s Procedure is that the closed nasal cavity has time to heal.



        Although HHT can manifest in a variety of ways, 90% of patients experience nosebleeds (epistaxis) that can range from mild to severe. Epistaxis severity determines the appropriate treatment (i.e., ointments, nasal packs, surgery). According to the Utah HHT Center, the Young’s Procedure is not indicated for HHT patients with mild to moderate nosebleeds, or even those with severe nosebleeds unless other less invasive treatment options have been tried and have not worked. But given current treatment options for nosebleeds in HHT patients, the Young’s Procedure is an option for select HHT patients. Ron Johnson is eager to share his story (written in 2006) with others who are affected by this disorder.



        Hi Liz,

        Youngs procedure was first performed in the fifties by Dr Young hence the term at the Sheffield Hallamshire Hospital in th UK it is a full nasal closure where flaps of skin are cut inside the nose and stitched together like a camera shutter to prevent air going thro the nose which causes nosebleeds. I had it done2 years ago and not 1 single bleed since before I was having regular blood transfusions to replace blood loss thro nosebleeds disadvantages you can only breathe thro the mouth and sort of change the way you eat to compensate you still sneeze.If you are experiencing serious nosebleeds and require transfusions then I would recomend it.My blood count before the procedure was about 5-6 it is now 12. Also a specialist in the field of HHT a Dr Valerie Lund at the London ENT wrote a paper on the subject and stated that all the case studies of people having Youngs Procedure reported a 100% success rate



        Bob, the above message from "Liz", is one that I got from a support group in the United Kingdom.



        ----- Original Message -----

        From: robert ware

        To: rediscoveringhopewithinhht@yahoogroups.com

        Sent: Wednesday, July 13, 2011 9:43 PM

        Subject: Re: [Rediscovering Hope within HHT ] Young's procedure



        Thanks for the reply Pat. I do use Prep H on a daily basis and I do try to get them on the bleeders. Most of the bad ones are farther back in the nose to the point that they are not reachable with the Prep H, or Phenylephrine HCL. Rarely they are and both methods are good to go. Just getting there is my major problem. I have what seems to be this one heavy bleeder that has been a gusher since september of last year. I been getting 3 units of blood ever 3 weeks, more or less. I'm getting 3 units tomorrow and this time it was only 2 weeks ago. I do watch all the triggers that I'm aware of which are most of the similar ones for all of us. I don't want to have any procedures done but I'm getting frustrated and you know what stress will do to you. I use Y.P. and Amicar and they both help sometimes. I hope that stem cell can one day alleviate the bleeding.

        Thanks again Pat.



        Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

        .







        [Non-text portions of this message have been removed]



























        [Non-text portions of this message have been removed]
      • maryannl66@windstream.net
        Hi Bob, you are very welcome and I, too, respect Pat s education on HHT, if it wouldn t be for her starting this group, it s hard telling where we all would
        Message 3 of 11 , Jul 14, 2011
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          Hi Bob, you are very welcome and I, too, respect Pat's education on HHT, if it wouldn't be for her starting this group, it's hard telling where we all would be, however, in talking with her, at first she said not to do it, but when I told her what all happened to me, she said maybe I had no choice, but to have it done.

          I have talked with some people who have had it done and they ALL said there are no cons, all positives EXCEPT one gal from Boston who was ready to go on disabiity at the age of 45 and did not have a life, and she said the only "con" is now when she goes for walks with her girlfriend, she can't walk and talk at the same time. haha. Now, I'll go for that kind of a simple "con", if it means no more nosebleeds. She hasn't had a bleed in 18 months. That's the kind of life I want to have....a normal life regardless if I can't smell, haha. I also do all the things that Pat mentions below, including the Preparation H. and I use it 3 times a day, however , in not being able to eat any dairy products, I now have problems with bone density so have to go back to the doc and see what to do about that. Before, I was getting all kinds of dairy, yogurt, cottage cheese, milk, ice cream, etc. etc. and now I get NONE of that stuff, so it's darned if you do and darned if you don't.

          Another day down...my sister who is coming up from Florida to take me to Connecticut, just called and said she booked her flight, so that's another step closer.

          Mary Ann
          ----- Original Message -----
          From: robert ware
          To: rediscoveringhopewithinhht@yahoogroups.com
          Sent: Thursday, July 14, 2011 8:22 PM
          Subject: Re: [Rediscovering Hope within HHT ] Young's procedure



          Thank you again Maryann for taking out from your time to educate me. I really appreciate it. I'm hoping to hear some of the negatives also, if there are any. Just having anything done to my nose scares the heck out of me. Although the good news is enticing. I don't know if you read Pat's comments which also is very sound advice and I respect her opinion. She. doesn't recommend any procedure for herself. She has a regimen that seems to work great for her and I feel has also helped me at various times.
          Thanks you and I hope your husband gets better soon,

          --- On Wed, 7/13/11, maryannl66@... <maryannl66@...> wrote:

          From: maryannl66@... <maryannl66@...>
          Subject: Re: [Rediscovering Hope within HHT ] Young's procedure
          To: rediscoveringhopewithinhht@yahoogroups.com
          Date: Wednesday, July 13, 2011, 10:12 PM



          Hi Bob, I don't know if I sent this to you before or not, but here's what I have saved in my documents. I copied and pasted it, and this is another reason that I decided to have the Young Procedure done....can't wait. Mary Ann

          Young’s Procedure

          The surgical procedure involves closure of the nasal cavity affected with atrophic rhinitis by creating mucocutaneous flaps. These flaps are sutured together in two layers: first the mucosal layer then the skin layer. The nasal cavity is kept closed for a period time ranging from nine months to forever. If, based on an examination, the crusts have disappeared, a revision surgery can be performed and the nasal cavity is reopened. The theory behind Young’s Procedure is that the closed nasal cavity has time to heal.

          Although HHT can manifest in a variety of ways, 90% of patients experience nosebleeds (epistaxis) that can range from mild to severe. Epistaxis severity determines the appropriate treatment (i.e., ointments, nasal packs, surgery). According to the Utah HHT Center, the Young’s Procedure is not indicated for HHT patients with mild to moderate nosebleeds, or even those with severe nosebleeds unless other less invasive treatment options have been tried and have not worked. But given current treatment options for nosebleeds in HHT patients, the Young’s Procedure is an option for select HHT patients. Ron Johnson is eager to share his story (written in 2006) with others who are affected by this disorder.

          Hi Liz,

          Youngs procedure was first performed in the fifties by Dr Young hence the term at the Sheffield Hallamshire Hospital in th UK it is a full nasal closure where flaps of skin are cut inside the nose and stitched together like a camera shutter to prevent air going thro the nose which causes nosebleeds. I had it done2 years ago and not 1 single bleed since before I was having regular blood transfusions to replace blood loss thro nosebleeds disadvantages you can only breathe thro the mouth and sort of change the way you eat to compensate you still sneeze.If you are experiencing serious nosebleeds and require transfusions then I would recomend it.My blood count before the procedure was about 5-6 it is now 12. Also a specialist in the field of HHT a Dr Valerie Lund at the London ENT wrote a paper on the subject and stated that all the case studies of people having Youngs Procedure reported a 100% success rate

          Bob, the above message from "Liz", is one that I got from a support group in the United Kingdom.

          -----



          [Non-text portions of this message have been removed]
        • Linda
          Hello I am new to this site but has been very helpful, Was wondering if anyone knows what vitamin to take for you bone density. I am on vitamin D 50 thousand
          Message 4 of 11 , Aug 12, 2011
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            Hello I am new to this site but has been very helpful, Was wondering if anyone knows what vitamin to take for you bone density. I am on vitamin D 50 thousand once a week but not sure if I should take some more. I have syopped all dairy. Just had a 5 1/2 inch avm taken out of lung.said have 2 more small ones in there, Fianlly found a Dr. that is a HHT Dr. in my area an have had all the test for avm.
            thanks for you Help Linda

            --- In rediscoveringhopewithinhht@yahoogroups.com, <maryannl66@...> wrote:
            >
            > Hi Bob, you are very welcome and I, too, respect Pat's education on HHT, if it wouldn't be for her starting this group, it's hard telling where we all would be, however, in talking with her, at first she said not to do it, but when I told her what all happened to me, she said maybe I had no choice, but to have it done.
            >
            > I have talked with some people who have had it done and they ALL said there are no cons, all positives EXCEPT one gal from Boston who was ready to go on disabiity at the age of 45 and did not have a life, and she said the only "con" is now when she goes for walks with her girlfriend, she can't walk and talk at the same time. haha. Now, I'll go for that kind of a simple "con", if it means no more nosebleeds. She hasn't had a bleed in 18 months. That's the kind of life I want to have....a normal life regardless if I can't smell, haha. I also do all the things that Pat mentions below, including the Preparation H. and I use it 3 times a day, however , in not being able to eat any dairy products, I now have problems with bone density so have to go back to the doc and see what to do about that. Before, I was getting all kinds of dairy, yogurt, cottage cheese, milk, ice cream, etc. etc. and now I get NONE of that stuff, so it's darned if you do and darned if you don't.
            >
            > Another day down...my sister who is coming up from Florida to take me to Connecticut, just called and said she booked her flight, so that's another step closer.
            >
            > Mary Ann
            > ----- Original Message -----
            > From: robert ware
            > To: rediscoveringhopewithinhht@yahoogroups.com
            > Sent: Thursday, July 14, 2011 8:22 PM
            > Subject: Re: [Rediscovering Hope within HHT ] Young's procedure
            >
            >
            >
            > Thank you again Maryann for taking out from your time to educate me. I really appreciate it. I'm hoping to hear some of the negatives also, if there are any. Just having anything done to my nose scares the heck out of me. Although the good news is enticing. I don't know if you read Pat's comments which also is very sound advice and I respect her opinion. She. doesn't recommend any procedure for herself. She has a regimen that seems to work great for her and I feel has also helped me at various times.
            > Thanks you and I hope your husband gets better soon,
            >
            > --- On Wed, 7/13/11, maryannl66@... <maryannl66@...> wrote:
            >
            > From: maryannl66@... <maryannl66@...>
            > Subject: Re: [Rediscovering Hope within HHT ] Young's procedure
            > To: rediscoveringhopewithinhht@yahoogroups.com
            > Date: Wednesday, July 13, 2011, 10:12 PM
            >
            >
            >
            > Hi Bob, I don't know if I sent this to you before or not, but here's what I have saved in my documents. I copied and pasted it, and this is another reason that I decided to have the Young Procedure done....can't wait. Mary Ann
            >
            > Young’s Procedure
            >
            > The surgical procedure involves closure of the nasal cavity affected with atrophic rhinitis by creating mucocutaneous flaps. These flaps are sutured together in two layers: first the mucosal layer then the skin layer. The nasal cavity is kept closed for a period time ranging from nine months to forever. If, based on an examination, the crusts have disappeared, a revision surgery can be performed and the nasal cavity is reopened. The theory behind Young’s Procedure is that the closed nasal cavity has time to heal.
            >
            > Although HHT can manifest in a variety of ways, 90% of patients experience nosebleeds (epistaxis) that can range from mild to severe. Epistaxis severity determines the appropriate treatment (i.e., ointments, nasal packs, surgery). According to the Utah HHT Center, the Young’s Procedure is not indicated for HHT patients with mild to moderate nosebleeds, or even those with severe nosebleeds unless other less invasive treatment options have been tried and have not worked. But given current treatment options for nosebleeds in HHT patients, the Young’s Procedure is an option for select HHT patients. Ron Johnson is eager to share his story (written in 2006) with others who are affected by this disorder.
            >
            > Hi Liz,
            >
            > Youngs procedure was first performed in the fifties by Dr Young hence the term at the Sheffield Hallamshire Hospital in th UK it is a full nasal closure where flaps of skin are cut inside the nose and stitched together like a camera shutter to prevent air going thro the nose which causes nosebleeds. I had it done2 years ago and not 1 single bleed since before I was having regular blood transfusions to replace blood loss thro nosebleeds disadvantages you can only breathe thro the mouth and sort of change the way you eat to compensate you still sneeze.If you are experiencing serious nosebleeds and require transfusions then I would recomend it.My blood count before the procedure was about 5-6 it is now 12. Also a specialist in the field of HHT a Dr Valerie Lund at the London ENT wrote a paper on the subject and stated that all the case studies of people having Youngs Procedure reported a 100% success rate
            >
            > Bob, the above message from "Liz", is one that I got from a support group in the United Kingdom.
            >
            > -----
            >
            >
            >
            > [Non-text portions of this message have been removed]
            >
          • NancyM3292@aol.com
            REMOVED or Embolized. Explain what they did please. Nancy In a message dated 10/12/2011 6:11:20 P.M. Central Daylight Time, lharris1955@sbcglobal.net writes:
            Message 5 of 11 , Oct 12, 2011
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              REMOVED or Embolized. Explain what they did please.

              Nancy




              In a message dated 10/12/2011 6:11:20 P.M. Central Daylight Time,
              lharris1955@... writes:






              Hello I am new to this site but has been very helpful, Was wondering if
              anyone knows what vitamin to take for you bone density. I am on vitamin D 50
              thousand once a week but not sure if I should take some more. I have
              syopped all dairy. Just had a 5 1/2 inch avm taken out of lung.said have 2 more
              small ones in there, Fianlly found a Dr. that is a HHT Dr. in my area an
              have had all the test for avm.
              thanks for you Help Linda

              --- In _rediscoveringhopewithinhht@yahoogroups.com_
              (mailto:rediscoveringhopewithinhht@yahoogroups.com) , <maryannl66@...> wrote:
              >
              > Hi Bob, you are very welcome and I, too, respect Pat's education on HHT,
              if it wouldn't be for her starting this group, it's hard telling where we
              all would be, however, in talking with her, at first she said not to do it,
              but when I told her what all happened to me, she said maybe I had no
              choice, but to have it done.
              >
              > I have talked with some people who have had it done and they ALL said
              there are no cons, all positives EXCEPT one gal from Boston who was ready to
              go on disabiity at the age of 45 and did not have a life, and she said the
              only "con" is now when she goes for walks with her girlfriend, she can't
              walk and talk at the same time. haha. Now, I'll go for that kind of a simple
              "con", if it means no more nosebleeds. She hasn't had a bleed in 18 months.
              That's the kind of life I want to have....a normal life regardless if I
              can't smell, haha. I also do all the things that Pat mentions below,
              including the Preparation H. and I use it 3 times a day, however , in not being
              able to eat any dairy products, I now have problems with bone density so have
              to go back to the doc and see what to do about that. Before, I was getting
              all kinds of dairy, yogurt, cottage cheese, milk, ice cream, etc. etc. and
              now I get NONE of that stuff, so it's darned if you do and darned if you
              don't.
              >
              > Another day down...my sister who is coming up from Florida to take me to
              Connecticut, just called and said she booked her flight, so that's another
              step closer.
              >
              > Mary Ann
              > ----- Original Message -----
              > From: robert ware
              > To: _rediscoveringhopewithinhht@yahoogroups.com_
              (mailto:rediscoveringhopewithinhht@yahoogroups.com)
              > Sent: Thursday, July 14, 2011 8:22 PM
              > Subject: Re: [Rediscovering Hope within HHT ] Young's procedure
              >
              >
              >
              > Thank you again Maryann for taking out from your time to educate me. I
              really appreciate it. I'm hoping to hear some of the negatives also, if
              there are any. Just having anything done to my nose scares the heck out of me.
              Although the good news is enticing. I don't know if you read Pat's comments
              which also is very sound advice and I respect her opinion. She. doesn't
              recommend any procedure for herself. She has a regimen that seems to work
              great for her and I feel has also helped me at various times.
              > Thanks you and I hope your husband gets better soon,
              >
              > --- On Wed, 7/13/11, maryannl66@... <maryannl66@...> wrote:
              >
              > From: maryannl66@... <maryannl66@...>
              > Subject: Re: [Rediscovering Hope within HHT ] Young's procedure
              > To: _rediscoveringhopewithinhht@yahoogroups.com_
              (mailto:rediscoveringhopewithinhht@yahoogroups.com)
              > Date: Wednesday, July 13, 2011, 10:12 PM
              >
              >
              >
              > Hi Bob, I don't know if I sent this to you before or not, but here's
              what I have saved in my documents. I copied and pasted it, and this is another
              reason that I decided to have the Young Procedure done....can't wait. Mary
              Ann
              >
              > Young’s Procedure
              >
              > The surgical procedure involves closure of the nasal cavity affected
              with atrophic rhinitis by creating mucocutaneous flaps. These flaps are
              sutured together in two layers: first the mucosal layer then the skin layer. The
              nasal cavity is kept closed for a period time ranging from nine months to
              forever. If, based on an examination, the crusts have disappeared, a
              revision surgery can be performed and the nasal cavity is reopened. The theory
              behind Young’s Procedure is that the closed nasal cavity has time to heal.
              >
              > Although HHT can manifest in a variety of ways, 90% of patients
              experience nosebleeds (epistaxis) that can range from mild to severe. Epistaxis
              severity determines the appropriate treatment (i.e., ointments, nasal packs,
              surgery). According to the Utah HHT Center, the Young’s Procedure is not
              indicated for HHT patients with mild to moderate nosebleeds, or even those
              with severe nosebleeds unless other less invasive treatment options have
              been tried and have not worked. But given current treatment options for
              nosebleeds in HHT patients, the Young’s Procedure is an option for select HHT
              patients. Ron Johnson is eager to share his story (written in 2006) with
              others who are affected by this disorder.
              >
              > Hi Liz,
              >
              > Youngs procedure was first performed in the fifties by Dr Young hence
              the term at the Sheffield Hallamshire Hospital in th UK it is a full nasal
              closure where flaps of skin are cut inside the nose and stitched together
              like a camera shutter to prevent air going thro the nose which causes
              nosebleeds. I had it done2 years ago and not 1 single bleed since before I was
              having regular blood transfusions to replace blood loss thro nosebleeds
              disadvantages you can only breathe thro the mouth and sort of change the way you
              eat to compensate you still sneeze.If you are experiencing serious
              nosebleeds and require transfusions then I would recomend it.My blood count before
              the procedure was about 5-6 it is now 12. Also a specialist in the field of
              HHT a Dr Valerie Lund at the London ENT wrote a paper on the subject and
              stated that all the case studies of people having Youngs Procedure reported a
              100% success rate
              >
              > Bob, the above message from "Liz", is one that I got from a support
              group in the United Kingdom.
              >
              > -----
              >
              >
              >
              > [Non-text portions of this message have been removed]
              >







              [Non-text portions of this message have been removed]
            • maryannl66@windstream.net
              I just had an appt. with my doctor because my bone density numbers were significantly decreased, I think because I was not eating any dairy. He told me 1500
              Message 6 of 11 , Oct 12, 2011
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                I just had an appt. with my doctor because my bone density numbers were significantly decreased, I think because I was not eating any dairy. He told me 1500 units of Vitamin D along with Calcium, but I also take 5000 a day instead of the D. He said I didn't really need that much. HOWEVER, since I have had the Youngs Procedure almost two months ago, I'm getting all the calcium and vitamin D I need. I'm now able to eat ice cream, cheese, yogurt, cottage cheese, milk, (though I still like my vanilla soy milk), I would never go back to the old me always worrying about when my nose was going to bleed next. I have more
                energy and am getting so much more work done. As a matter of fact, for the first time in 40 years, I made several batches of strawberry freezer jam and today made some applesauce to freeze. Life is good....

                Mary Ann


                ----- Original Message -----
                From: NancyM3292@...
                To: rediscoveringhopewithinhht@yahoogroups.com
                Sent: Wednesday, October 12, 2011 7:33 PM
                Subject: Re: [Rediscovering Hope within HHT ] Young's procedure



                REMOVED or Embolized. Explain what they did please.

                Nancy


                In a message dated 10/12/2011 6:11:20 P.M. Central Daylight Time,
                lharris1955@... writes:

                Hello I am new to this site but has been very helpful, Was wondering if
                anyone knows what vitamin to take for you bone density. I am on vitamin D 50
                thousand once a week but not sure if I should take some more. I have
                syopped all dairy. Just had a 5 1/2 inch avm taken out of lung.said have 2 more
                small ones in there, Fianlly found a Dr. that is a HHT Dr. in my area an
                have had all the test for avm.
                thanks for you Help Linda

                --- In _rediscoveringhopewithinhht@yahoogroups.com_
                (mailto:rediscoveringhopewithinhht@yahoogroups.com) , <maryannl66@...> wrote:
                >
                > Hi Bob, you are very welcome and I, too, respect Pat's education on HHT,
                if it wouldn't be for her starting this group, it's hard telling where we
                all would be, however, in talking with her, at first she said not to do it,
                but when I told her what all happened to me, she said maybe I had no
                choice, but to have it done.
                >
                > I have talked with some people who have had it done and they ALL said
                there are no cons, all positives EXCEPT one gal from Boston who was ready to
                go on disabiity at the age of 45 and did not have a life, and she said the
                only "con" is now when she goes for walks with her girlfriend, she can't
                walk and talk at the same time. haha. Now, I'll go for that kind of a simple
                "con", if it means no more nosebleeds. She hasn't had a bleed in 18 months.
                That's the kind of life I want to have....a normal life regardless if I
                can't smell, haha. I also do all the things that Pat mentions below,
                including the Preparation H. and I use it 3 times a day, however , in not being
                able to eat any dairy products, I now have problems with bone density so have
                to go back to the doc and see what to do about that. Before, I was getting
                all kinds of dairy, yogurt, cottage cheese, milk, ice cream, etc. etc. and
                now I get NONE of that stuff, so it's darned if you do and darned if you
                don't.
                >
                > Another day down...my sister who is coming up from Florida to take me to
                Connecticut, just called and said she booked her flight, so that's another
                step closer.
                >
                > Mary Ann
                > ----- Original Message -----
                > From: robert ware
                > To: _rediscoveringhopewithinhht@yahoogroups.com_
                (mailto:rediscoveringhopewithinhht@yahoogroups.com)
                > Sent: Thursday, July 14, 2011 8:22 PM
                > Subject: Re: [Rediscovering Hope within HHT ] Young's procedure
                >
                >
                >
                > Thank you again Maryann for taking out from your time to educate me. I
                really appreciate it. I'm hoping to hear some of the negatives also, if
                there are any. Just having anything done to my nose scares the heck out of me.
                Although the good news is enticing. I don't know if you read Pat's comments
                which also is very sound advice and I respect her opinion. She. doesn't
                recommend any procedure for herself. She has a regimen that seems to work
                great for her and I feel has also helped me at various times.
                > Thanks you and I hope your husband gets better soon,
                >
                > --- On Wed, 7/13/11, maryannl66@... <maryannl66@...> wrote:
                >
                > From: maryannl66@... <maryannl66@...>
                > Subject: Re: [Rediscovering Hope within HHT ] Young's procedure
                > To: _rediscoveringhopewithinhht@yahoogroups.com_
                (mailto:rediscoveringhopewithinhht@yahoogroups.com)
                > Date: Wednesday, July 13, 2011, 10:12 PM
                >
                >
                >
                > Hi Bob, I don't know if I sent this to you before or not, but here's
                what I have saved in my documents. I copied and pasted it, and this is another
                reason that I decided to have the Young Procedure done....can't wait. Mary
                Ann
                >
                > Young’s Procedure
                >
                > The surgical procedure involves closure of the nasal cavity affected
                with atrophic rhinitis by creating mucocutaneous flaps. These flaps are
                sutured together in two layers: first the mucosal layer then the skin layer. The
                nasal cavity is kept closed for a period time ranging from nine months to
                forever. If, based on an examination, the crusts have disappeared, a
                revision surgery can be performed and the nasal cavity is reopened. The theory
                behind Young’s Procedure is that the closed nasal cavity has time to heal.
                >
                > Although HHT can manifest in a variety of ways, 90% of patients
                experience nosebleeds (epistaxis) that can range from mild to severe. Epistaxis
                severity determines the appropriate treatment (i.e., ointments, nasal packs,
                surgery). According to the Utah HHT Center, the Young’s Procedure is not
                indicated for HHT patients with mild to moderate nosebleeds, or even those
                with severe nosebleeds unless other less invasive treatment options have
                been tried and have not worked. But given current treatment options for
                nosebleeds in HHT patients, the Young’s Procedure is an option for select HHT
                patients. Ron Johnson is eager to share his story (written in 2006) with
                others who are affected by this disorder.
                >
                > Hi Liz,
                >
                > Youngs procedure was first performed in the fifties by Dr Young hence
                the term at the Sheffield Hallamshire Hospital in th UK it is a full nasal
                closure where flaps of skin are cut inside the nose and stitched together
                like a camera shutter to prevent air going thro the nose which causes
                nosebleeds. I had it done2 years ago and not 1 single bleed since before I was
                having regular blood transfusions to replace blood loss thro nosebleeds
                disadvantages you can only breathe thro the mouth and sort of change the way you
                eat to compensate you still sneeze.If you are experiencing serious
                nosebleeds and require transfusions then I would recomend it.My blood count before
                the procedure was about 5-6 it is now 12. Also a specialist in the field of
                HHT a Dr Valerie Lund at the London ENT wrote a paper on the subject and
                stated that all the case studies of people having Youngs Procedure reported a
                100% success rate
                >
                > Bob, the above message from "Liz", is one that I got from a support
                group in the United Kingdom.
                >
                > -----
                >
                >
                >
                > [Non-text portions of this message have been removed]
                >

                [Non-text portions of this message have been removed]





                [Non-text portions of this message have been removed]
              • NancyM3292@aol.com
                So happy for you! NANCY In a message dated 10/12/2011 9:14:07 P.M. Central Daylight Time, maryannl66@windstream.net writes: I just had an appt. with my doctor
                Message 7 of 11 , Oct 12, 2011
                View Source
                • 0 Attachment
                  So happy for you!

                  NANCY





                  In a message dated 10/12/2011 9:14:07 P.M. Central Daylight Time,
                  maryannl66@... writes:




                  I just had an appt. with my doctor because my bone density numbers were
                  significantly decreased, I think because I was not eating any dairy. He told
                  me 1500 units of Vitamin D along with Calcium, but I also take 5000 a day
                  instead of the D. He said I didn't really need that much. HOWEVER, since I
                  have had the Youngs Procedure almost two months ago, I'm getting all the
                  calcium and vitamin D I need. I'm now able to eat ice cream, cheese, yogurt,
                  cottage cheese, milk, (though I still like my vanilla soy milk), I would
                  never go back to the old me always worrying about when my nose was going to
                  bleed next. I have more
                  energy and am getting so much more work done. As a matter of fact, for the
                  first time in 40 years, I made several batches of strawberry freezer jam
                  and today made some applesauce to freeze. Life is good....

                  Mary Ann

                  ----- Original Message -----
                  From: _NancyM3292@..._ (mailto:NancyM3292@...)
                  To: _rediscoveringhopewithinhht@yahoogroups.com_
                  (mailto:rediscoveringhopewithinhht@yahoogroups.com)
                  Sent: Wednesday, October 12, 2011 7:33 PM
                  Subject: Re: [Rediscovering Hope within HHT ] Young's procedure

                  REMOVED or Embolized. Explain what they did please.

                  Nancy

                  In a message dated 10/12/2011 6:11:20 P.M. Central Daylight Time,
                  _lharris1955@..._ (mailto:lharris1955@...) writes:

                  Hello I am new to this site but has been very helpful, Was wondering if
                  anyone knows what vitamin to take for you bone density. I am on vitamin D
                  50
                  thousand once a week but not sure if I should take some more. I have
                  syopped all dairy. Just had a 5 1/2 inch avm taken out of lung.said have 2
                  more
                  small ones in there, Fianlly found a Dr. that is a HHT Dr. in my area an
                  have had all the test for avm.
                  thanks for you Help Linda

                  --- In __rediscoveringhopewithinhht@yahoogroups.com_
                  (mailto:_rediscoveringhopewithinhht@yahoogroups.com) _
                  (mailto:_rediscoveringhopewithinhht@yahoogroups.com_
                  (mailto:rediscoveringhopewithinhht@yahoogroups.com) ) , <maryannl66@...> wrote:
                  >
                  > Hi Bob, you are very welcome and I, too, respect Pat's education on HHT,
                  if it wouldn't be for her starting this group, it's hard telling where we
                  all would be, however, in talking with her, at first she said not to do
                  it,
                  but when I told her what all happened to me, she said maybe I had no
                  choice, but to have it done.
                  >
                  > I have talked with some people who have had it done and they ALL said
                  there are no cons, all positives EXCEPT one gal from Boston who was ready
                  to
                  go on disabiity at the age of 45 and did not have a life, and she said the
                  only "con" is now when she goes for walks with her girlfriend, she can't
                  walk and talk at the same time. haha. Now, I'll go for that kind of a
                  simple
                  "con", if it means no more nosebleeds. She hasn't had a bleed in 18
                  months.
                  That's the kind of life I want to have....a normal life regardless if I
                  can't smell, haha. I also do all the things that Pat mentions below,
                  including the Preparation H. and I use it 3 times a day, however , in not
                  being
                  able to eat any dairy products, I now have problems with bone density so
                  have
                  to go back to the doc and see what to do about that. Before, I was getting
                  all kinds of dairy, yogurt, cottage cheese, milk, ice cream, etc. etc. and
                  now I get NONE of that stuff, so it's darned if you do and darned if you
                  don't.
                  >
                  > Another day down...my sister who is coming up from Florida to take me to

                  Connecticut, just called and said she booked her flight, so that's another
                  step closer.
                  >
                  > Mary Ann
                  > ----- Original Message -----
                  > From: robert ware
                  > To: __rediscoveringhopewithinhht@yahoogroups.com_
                  (mailto:_rediscoveringhopewithinhht@yahoogroups.com) _
                  (mailto:_rediscoveringhopewithinhht@yahoogroups.com_
                  (mailto:rediscoveringhopewithinhht@yahoogroups.com) )
                  > Sent: Thursday, July 14, 2011 8:22 PM
                  > Subject: Re: [Rediscovering Hope within HHT ] Young's procedure
                  >
                  >
                  >
                  > Thank you again Maryann for taking out from your time to educate me. I
                  really appreciate it. I'm hoping to hear some of the negatives also, if
                  there are any. Just having anything done to my nose scares the heck out of
                  me.
                  Although the good news is enticing. I don't know if you read Pat's
                  comments
                  which also is very sound advice and I respect her opinion. She. doesn't
                  recommend any procedure for herself. She has a regimen that seems to work
                  great for her and I feel has also helped me at various times.
                  > Thanks you and I hope your husband gets better soon,
                  >
                  > --- On Wed, 7/13/11, maryannl66@... <maryannl66@...> wrote:
                  >
                  > From: maryannl66@... <maryannl66@...>
                  > Subject: Re: [Rediscovering Hope within HHT ] Young's procedure
                  > To: __rediscoveringhopewithinhht@yahoogroups.com_
                  (mailto:_rediscoveringhopewithinhht@yahoogroups.com) _
                  (mailto:_rediscoveringhopewithinhht@yahoogroups.com_
                  (mailto:rediscoveringhopewithinhht@yahoogroups.com) )
                  > Date: Wednesday, July 13, 2011, 10:12 PM
                  >
                  >
                  >
                  > Hi Bob, I don't know if I sent this to you before or not, but here's
                  what I have saved in my documents. I copied and pasted it, and this is
                  another
                  reason that I decided to have the Young Procedure done....can't wait. Mary
                  Ann
                  >
                  > Young’s Procedure
                  >
                  > The surgical procedure involves closure of the nasal cavity affected
                  with atrophic rhinitis by creating mucocutaneous flaps. These flaps are
                  sutured together in two layers: first the mucosal layer then the skin
                  layer. The
                  nasal cavity is kept closed for a period time ranging from nine months to
                  forever. If, based on an examination, the crusts have disappeared, a
                  revision surgery can be performed and the nasal cavity is reopened. The
                  theory
                  behind Young’s Procedure is that the closed nasal cavity has time to
                  heal.
                  >
                  > Although HHT can manifest in a variety of ways, 90% of patients
                  experience nosebleeds (epistaxis) that can range from mild to severe.
                  Epistaxis
                  severity determines the appropriate treatment (i.e., ointments, nasal
                  packs,
                  surgery). According to the Utah HHT Center, the Young’s Procedure is
                  not
                  indicated for HHT patients with mild to moderate nosebleeds, or even those
                  with severe nosebleeds unless other less invasive treatment options have
                  been tried and have not worked. But given current treatment options for
                  nosebleeds in HHT patients, the Young’s Procedure is an option for
                  select HHT
                  patients. Ron Johnson is eager to share his story (written in 2006) with
                  others who are affected by this disorder.
                  >
                  > Hi Liz,
                  >
                  > Youngs procedure was first performed in the fifties by Dr Young hence
                  the term at the Sheffield Hallamshire Hospital in th UK it is a full nasal
                  closure where flaps of skin are cut inside the nose and stitched together
                  like a camera shutter to prevent air going thro the nose which causes
                  nosebleeds. I had it done2 years ago and not 1 single bleed since before I
                  was
                  having regular blood transfusions to replace blood loss thro nosebleeds
                  disadvantages you can only breathe thro the mouth and sort of change the
                  way you
                  eat to compensate you still sneeze.If you are experiencing serious
                  nosebleeds and require transfusions then I would recomend it.My blood
                  count before
                  the procedure was about 5-6 it is now 12. Also a specialist in the field
                  of
                  HHT a Dr Valerie Lund at the London ENT wrote a paper on the subject and
                  stated that all the case studies of people having Youngs Procedure
                  reported a
                  100% success rate
                  >
                  > Bob, the above message from "Liz", is one that I got from a support
                  group in the United Kingdom.
                  >
                  > -----
                  >
                  >
                  >
                  > [Non-text portions of this message have been removed]
                  >

                  [Non-text portions of this message have been removed]

                  [Non-text portions of this message have been removed]







                  [Non-text portions of this message have been removed]
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