Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 Deb, > He has Spina Bifida - T12, shunt, latex allergy, syrinx, tethered cord at L1 and ACMI with a > 20mm herniation. > > His MRI also showed that he had a generous foramen magnum > How can the foramen magnum be generous if the tonsils are herniated as much as 20mm? Doesn't sound right to me. Mu daughter had NO herniation of the tonsils (diagnosed with Chiari I by only 2 of over a dozen NSGs and radiologists), no syrinx and had gagging, headaches, weakness, plus others, and decompression surgery alleviated her many symptoms. From what I've heard, decompressing can help both the Chiari and the syrinx, but I'm no expert on Syringomyelia. Tethered cord needs a different surgery. My daughter also had a tethered cord from a fatty filum. Eurico Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 Deb, > He has Spina Bifida - T12, shunt, latex allergy, syrinx, tethered cord at L1 and ACMI with a > 20mm herniation. > > His MRI also showed that he had a generous foramen magnum > How can the foramen magnum be generous if the tonsils are herniated as much as 20mm? Doesn't sound right to me. Mu daughter had NO herniation of the tonsils (diagnosed with Chiari I by only 2 of over a dozen NSGs and radiologists), no syrinx and had gagging, headaches, weakness, plus others, and decompression surgery alleviated her many symptoms. From what I've heard, decompressing can help both the Chiari and the syrinx, but I'm no expert on Syringomyelia. Tethered cord needs a different surgery. My daughter also had a tethered cord from a fatty filum. Eurico Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 Hi- I have to disagrees with Ora on this one. I think that the touching issues have to be dealt with first. Jane (my nurse practitioner) always tells me where she is touching, what it will feel like etc...If you have a high anxiety level about being touched especially in the vaginal area I would try to deal with some of those issues first, otherwise your going to stress out every time and have it be a total failure. Tell us what area you live in and maybe someone on the list can recommend a good female ob/nurse practitioner/gyn/internist whatever. By the way have you ever had a massage done? Maybe that would be a safe way to have someone touch you. Hope this helps. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 Hi- I have to disagrees with Ora on this one. I think that the touching issues have to be dealt with first. Jane (my nurse practitioner) always tells me where she is touching, what it will feel like etc...If you have a high anxiety level about being touched especially in the vaginal area I would try to deal with some of those issues first, otherwise your going to stress out every time and have it be a total failure. Tell us what area you live in and maybe someone on the list can recommend a good female ob/nurse practitioner/gyn/internist whatever. By the way have you ever had a massage done? Maybe that would be a safe way to have someone touch you. Hope this helps. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 To: <VulvarDisorders > Sent: Monday, October 07, 2002 10:14 AM Subject: New to list There is a group called Vulvodynia-support. That could be the one. Ora > Also, once a long time ago I saw a men's VV/vulvodynia support group, > but can't find it now. Does anyone have a website for that? > > Thanks, > > Tony > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 To: <VulvarDisorders > Sent: Monday, October 07, 2002 10:14 AM Subject: New to list There is a group called Vulvodynia-support. That could be the one. Ora > Also, once a long time ago I saw a men's VV/vulvodynia support group, > but can't find it now. Does anyone have a website for that? > > Thanks, > > Tony > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 To: <VulvarDisorders > Sent: Monday, October 07, 2002 10:14 AM Subject: New to list There is a group called Vulvodynia-support. That could be the one. Ora > Also, once a long time ago I saw a men's VV/vulvodynia support group, > but can't find it now. Does anyone have a website for that? > > Thanks, > > Tony > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Tony, Your wife is not the only one that feels intimidated by doctors! :-) She also isn't the only lady out there that hasn't had intercourse in 2 years! I think you may want to ask her to get on this message board, after all she doesn't have to speak with anyone in person, and will probably feel alot better if she knew that there were others out there for support! We are all here for her. I am fairly new to this board as well...and I already feel right at home, everyone here is very helpful, and very thoughtful! My best wishes to you and your wife! > Hello everyone, > > I have been lurking around here for a week or so and I thought I > would introduce myself and ask a few questions. my name is Tony and I > bet I am a rarity in that I am a man on this list. My wife of 8 yrs > was diagnosed with VV about 3-4 years ago (although she had symptoms > starting about 7 years ago, and was repeatedly misdiagnosed for 3 > years or more.) Anyway, her main symptom(s) is pain on vulvar contact > (intercourse, tampons). As long as there is no contact she is mostly > OK, which I guess is better than some of you according to what I have > read! > > Anyway, the reason I am here instead of her is that she is very > intimidated by this condition and anything medical that has to do > with it. She is deathly afraid of going to the doctor, ESPECIALLY > OB/GYN and she particulary does not like to see male doctors. (She > had a very bad experience that put her off male doctors at a young > age). So, I have been trying to gather information and anything that > might be helpful. The reason I am writing right now is that I had > read some posts from people who have used Temavate (sp?) steroid > cream with some success. I think I read that two weeks of steroid > followed by an estrogen cream was helpful in healing the vulvar skin? > I got a prescription for temavate a few weeks ago from a > dermatologist and I didn't end up using it (never even opened the > box). So I was thinking that if it is possible to get the estrogen > cream (if that is what she's supposed to follow up with) compounded > without a prescription that maybe she can try this regimen and see if > ti is helpful at all. > > I know it is not the best idea for her to try this without seeing a > doc, but she has not been to the doctor in a couple of years and > basically just refuses to go. She feels like they don't listen and > don't care about her as a person, they just think she is a wierdo > when she tells them she hasn't had sex in 2+ years and she has been > having these symptoms for so long without actively pursuing > treatment. (I bet a lot of you had similar experiences) Adding to the > anti-doctor sentiment is the fact that she has already seen the guy > who is apparently the preeminent specialist in our area (Dr. > Summers in Salt Lake City UT) who prescribed her an overkill of > various antibiotics that didn't help her. She actually did find one > doctor that she felt cared and truly wanted to help, but then we > changed insurance co's and she can't see her anymore. In the past she > has been on various doses of amitryptaline (sp?) I think up to 75mg. > She did not tolerate it well (drowsiness) and it did not help with > the pain. > > Any advice is greatly appreciated. > > Also, once a long time ago I saw a men's VV/vulvodynia support group, > but can't find it now. Does anyone have a website for that? > > Thanks, > > Tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Tony, Your wife is not the only one that feels intimidated by doctors! :-) She also isn't the only lady out there that hasn't had intercourse in 2 years! I think you may want to ask her to get on this message board, after all she doesn't have to speak with anyone in person, and will probably feel alot better if she knew that there were others out there for support! We are all here for her. I am fairly new to this board as well...and I already feel right at home, everyone here is very helpful, and very thoughtful! My best wishes to you and your wife! > Hello everyone, > > I have been lurking around here for a week or so and I thought I > would introduce myself and ask a few questions. my name is Tony and I > bet I am a rarity in that I am a man on this list. My wife of 8 yrs > was diagnosed with VV about 3-4 years ago (although she had symptoms > starting about 7 years ago, and was repeatedly misdiagnosed for 3 > years or more.) Anyway, her main symptom(s) is pain on vulvar contact > (intercourse, tampons). As long as there is no contact she is mostly > OK, which I guess is better than some of you according to what I have > read! > > Anyway, the reason I am here instead of her is that she is very > intimidated by this condition and anything medical that has to do > with it. She is deathly afraid of going to the doctor, ESPECIALLY > OB/GYN and she particulary does not like to see male doctors. (She > had a very bad experience that put her off male doctors at a young > age). So, I have been trying to gather information and anything that > might be helpful. The reason I am writing right now is that I had > read some posts from people who have used Temavate (sp?) steroid > cream with some success. I think I read that two weeks of steroid > followed by an estrogen cream was helpful in healing the vulvar skin? > I got a prescription for temavate a few weeks ago from a > dermatologist and I didn't end up using it (never even opened the > box). So I was thinking that if it is possible to get the estrogen > cream (if that is what she's supposed to follow up with) compounded > without a prescription that maybe she can try this regimen and see if > ti is helpful at all. > > I know it is not the best idea for her to try this without seeing a > doc, but she has not been to the doctor in a couple of years and > basically just refuses to go. She feels like they don't listen and > don't care about her as a person, they just think she is a wierdo > when she tells them she hasn't had sex in 2+ years and she has been > having these symptoms for so long without actively pursuing > treatment. (I bet a lot of you had similar experiences) Adding to the > anti-doctor sentiment is the fact that she has already seen the guy > who is apparently the preeminent specialist in our area (Dr. > Summers in Salt Lake City UT) who prescribed her an overkill of > various antibiotics that didn't help her. She actually did find one > doctor that she felt cared and truly wanted to help, but then we > changed insurance co's and she can't see her anymore. In the past she > has been on various doses of amitryptaline (sp?) I think up to 75mg. > She did not tolerate it well (drowsiness) and it did not help with > the pain. > > Any advice is greatly appreciated. > > Also, once a long time ago I saw a men's VV/vulvodynia support group, > but can't find it now. Does anyone have a website for that? > > Thanks, > > Tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Tony, Your wife is not the only one that feels intimidated by doctors! :-) She also isn't the only lady out there that hasn't had intercourse in 2 years! I think you may want to ask her to get on this message board, after all she doesn't have to speak with anyone in person, and will probably feel alot better if she knew that there were others out there for support! We are all here for her. I am fairly new to this board as well...and I already feel right at home, everyone here is very helpful, and very thoughtful! My best wishes to you and your wife! > Hello everyone, > > I have been lurking around here for a week or so and I thought I > would introduce myself and ask a few questions. my name is Tony and I > bet I am a rarity in that I am a man on this list. My wife of 8 yrs > was diagnosed with VV about 3-4 years ago (although she had symptoms > starting about 7 years ago, and was repeatedly misdiagnosed for 3 > years or more.) Anyway, her main symptom(s) is pain on vulvar contact > (intercourse, tampons). As long as there is no contact she is mostly > OK, which I guess is better than some of you according to what I have > read! > > Anyway, the reason I am here instead of her is that she is very > intimidated by this condition and anything medical that has to do > with it. She is deathly afraid of going to the doctor, ESPECIALLY > OB/GYN and she particulary does not like to see male doctors. (She > had a very bad experience that put her off male doctors at a young > age). So, I have been trying to gather information and anything that > might be helpful. The reason I am writing right now is that I had > read some posts from people who have used Temavate (sp?) steroid > cream with some success. I think I read that two weeks of steroid > followed by an estrogen cream was helpful in healing the vulvar skin? > I got a prescription for temavate a few weeks ago from a > dermatologist and I didn't end up using it (never even opened the > box). So I was thinking that if it is possible to get the estrogen > cream (if that is what she's supposed to follow up with) compounded > without a prescription that maybe she can try this regimen and see if > ti is helpful at all. > > I know it is not the best idea for her to try this without seeing a > doc, but she has not been to the doctor in a couple of years and > basically just refuses to go. She feels like they don't listen and > don't care about her as a person, they just think she is a wierdo > when she tells them she hasn't had sex in 2+ years and she has been > having these symptoms for so long without actively pursuing > treatment. (I bet a lot of you had similar experiences) Adding to the > anti-doctor sentiment is the fact that she has already seen the guy > who is apparently the preeminent specialist in our area (Dr. > Summers in Salt Lake City UT) who prescribed her an overkill of > various antibiotics that didn't help her. She actually did find one > doctor that she felt cared and truly wanted to help, but then we > changed insurance co's and she can't see her anymore. In the past she > has been on various doses of amitryptaline (sp?) I think up to 75mg. > She did not tolerate it well (drowsiness) and it did not help with > the pain. > > Any advice is greatly appreciated. > > Also, once a long time ago I saw a men's VV/vulvodynia support group, > but can't find it now. Does anyone have a website for that? > > Thanks, > > Tony Quote Link to comment Share on other sites More sharing options...
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