So far I've had 5 stretchings since my Stage 4 esophageal surgery. They are very helpful. At first the benefit of being able to swallow easier wasn't too great but got much better with each stretching. I actually went 9 months between stretchings recently. It's a godsend. Done under light sedation (Propofol usually) so recovery is good. I hope you can find alternatives to the trach - living with a trach is not good. I had one for the 2 mo. I was in a coma after my surgery. I've dealt with many health issues in my life and I am always open to new ideas and new doctors if need be. I need docs who think outside the box & really listen to your needs. It could mean seeing other doctors till you get resolutions. I wish you good luck with that. It is doable!
I’ve become so frustrated with my medical care. Suffering long term side effects after head and neck surgeries and radiation. Experiencing continued shoulder shrugs on how to treat or manage this
except for PT which I am doing. What I am finding through internet research that there are other treatments to at least safely try. More shoulder shrugs when I bring the topics up. Medical centers need to think about a patient long term and what happens to them down the road.. I’m more then a dollar sign for initial surgery and radiation treatment. Angry
Jerrysgirl3,
OMG woman you have been thru the ringer and back again!!! You must have the patience of a saint. I'll tell you I suffered from severe red, itchy hives all over also just prior to my esophageal cancer diagnosis. Dermatologist gave me a cream to apply BID and that took care of it. Never did find out what caused it after numerous testings.
Keep on keeping on!!!!
Lori L.
@lori57216 My lupus diagnosis came at the same time my four major food allergies showed up at the age of 68!! I had such severe hives all over my body I could actually line up the bedsheet wrinkles to some of the very long hives! My body was literally constantly buzzing, burning and thinking back on it, I think, already having leukemia and other auto immune medical issues, that they would have taken me out sooner rather than later they were so severe and constant 🥺. I tested, through blood, positive for wheat (including gluten-free wheat -this goes out to the nutritionist in the hospital who told me I could eat gluten free buns which caused hives all over 😡) dairy, egg whites and soy!! I was started on a month dose pack of Medrol steroid, but it was a complete immediate diet change, allergy pills and Gold Bond powder with cornstarch that the hives stopped IMMEDIATELY and have not returned (I'm off of all meds now) unless I inadvertently eat something that was processed in a factory that also processes one of my allergens!! Talk about life changing!! But I also went to an allergist for further scratch skin testing and she not only refused to test me, she told me it was a "coincidence" that my severe hives stopped when I stopped eating the foods I tested allergic to by blood!!! I say go for it! You have nothing to lose.
Jerrysgirl3,
OMG woman you have been thru the ringer and back again!!! You must have the patience of a saint. I'll tell you I suffered from severe red, itchy hives all over also just prior to my esophageal cancer diagnosis. Dermatologist gave me a cream to apply BID and that took care of it. Never did find out what caused it after numerous testings.
Keep on keeping on!!!!
Lori L.
Actually jerrysgirl3 I have thought about allergies and I think that is going to be my next move is to be referred to an allergist. I have entertained all of those things you mentioned above. Wouldn't it be something if all this turned out to be something so "simple" ? What a relief that would be after all the crap I've been thru. Thank you very much for your input!!!!!!
Livin the dream,
Lori L.
@lori57216 My lupus diagnosis came at the same time my four major food allergies showed up at the age of 68!! I had such severe hives all over my body I could actually line up the bedsheet wrinkles to some of the very long hives! My body was literally constantly buzzing, burning and thinking back on it, I think, already having leukemia and other auto immune medical issues, that they would have taken me out sooner rather than later they were so severe and constant 🥺. I tested, through blood, positive for wheat (including gluten-free wheat -this goes out to the nutritionist in the hospital who told me I could eat gluten free buns which caused hives all over 😡) dairy, egg whites and soy!! I was started on a month dose pack of Medrol steroid, but it was a complete immediate diet change, allergy pills and Gold Bond powder with cornstarch that the hives stopped IMMEDIATELY and have not returned (I'm off of all meds now) unless I inadvertently eat something that was processed in a factory that also processes one of my allergens!! Talk about life changing!! But I also went to an allergist for further scratch skin testing and she not only refused to test me, she told me it was a "coincidence" that my severe hives stopped when I stopped eating the foods I tested allergic to by blood!!! I say go for it! You have nothing to lose.
@lori57216 Allergies can be to anything and be the cause of so many side effects. That's why I mentioned the possible bed allergy. Could be detergent. Could be cat hair. Could be a change in detergent ingredients. Just like a change in inactive ingredients in medicines, which have caused me all different kinds of bad side effects. I'm sorry you are going through this, and no I am not, and I was just offering another possible option which I'm sure you explored already. In the world of doctors we have now, listen to yourself and do your own research. You'll probably get more answers.
Actually jerrysgirl3 I have thought about allergies and I think that is going to be my next move is to be referred to an allergist. I have entertained all of those things you mentioned above. Wouldn't it be something if all this turned out to be something so "simple" ? What a relief that would be after all the crap I've been thru. Thank you very much for your input!!!!!!
Livin the dream,
Lori L.
No Colleen they haven't. I'm sorry for the delay in my response to your question as for some reason I'm just seeing this now.
I have my first scans after tx the end of Sept. I'm rather scared we didn't get all the cancer as the reason for the nasal cavity scope to check in the first place was because of the nagging throat itching.......... and it persists................
I did notice that one of our esteemed members of this board mentioned perhaps an allergic reaction to my bed.............. don't matter where I am. I mentioned it kept me up at night because it's annoying in the first place and then to have it wake me up and keep me awake is enough to make me say bad words.
Lori,
Still trying to live the dream.......... as we all should 😉
the dreams have just changed.
@lori57216 Allergies can be to anything and be the cause of so many side effects. That's why I mentioned the possible bed allergy. Could be detergent. Could be cat hair. Could be a change in detergent ingredients. Just like a change in inactive ingredients in medicines, which have caused me all different kinds of bad side effects. I'm sorry you are going through this, and no I am not, and I was just offering another possible option which I'm sure you explored already. In the world of doctors we have now, listen to yourself and do your own research. You'll probably get more answers.
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So did you have the trach removed because of the positive affects of the stretching?
Thanks for your reply.
I feel the same way. They will not deviate from their purview with regards to other treatments.
Yes...
Yes, I'm sure most of us here can relate / feel like............. we are waiting for the other shoe to drop.
Crazy how it's never ending...
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1 ReactionJerrysgirl3,
OMG woman you have been thru the ringer and back again!!! You must have the patience of a saint. I'll tell you I suffered from severe red, itchy hives all over also just prior to my esophageal cancer diagnosis. Dermatologist gave me a cream to apply BID and that took care of it. Never did find out what caused it after numerous testings.
Keep on keeping on!!!!
Lori L.
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1 Reaction@lori57216 My lupus diagnosis came at the same time my four major food allergies showed up at the age of 68!! I had such severe hives all over my body I could actually line up the bedsheet wrinkles to some of the very long hives! My body was literally constantly buzzing, burning and thinking back on it, I think, already having leukemia and other auto immune medical issues, that they would have taken me out sooner rather than later they were so severe and constant 🥺. I tested, through blood, positive for wheat (including gluten-free wheat -this goes out to the nutritionist in the hospital who told me I could eat gluten free buns which caused hives all over 😡) dairy, egg whites and soy!! I was started on a month dose pack of Medrol steroid, but it was a complete immediate diet change, allergy pills and Gold Bond powder with cornstarch that the hives stopped IMMEDIATELY and have not returned (I'm off of all meds now) unless I inadvertently eat something that was processed in a factory that also processes one of my allergens!! Talk about life changing!! But I also went to an allergist for further scratch skin testing and she not only refused to test me, she told me it was a "coincidence" that my severe hives stopped when I stopped eating the foods I tested allergic to by blood!!! I say go for it! You have nothing to lose.
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1 ReactionJerrysgirl3, THANK YOU!!! And the ingredients are beneficial!!!!!! I have everything on hand except the fresh lemon. 🙂
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1 ReactionActually jerrysgirl3 I have thought about allergies and I think that is going to be my next move is to be referred to an allergist. I have entertained all of those things you mentioned above. Wouldn't it be something if all this turned out to be something so "simple" ? What a relief that would be after all the crap I've been thru. Thank you very much for your input!!!!!!
Livin the dream,
Lori L.
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1 Reaction@lori57216 Allergies can be to anything and be the cause of so many side effects. That's why I mentioned the possible bed allergy. Could be detergent. Could be cat hair. Could be a change in detergent ingredients. Just like a change in inactive ingredients in medicines, which have caused me all different kinds of bad side effects. I'm sorry you are going through this, and no I am not, and I was just offering another possible option which I'm sure you explored already. In the world of doctors we have now, listen to yourself and do your own research. You'll probably get more answers.
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