Sharon

[Guest guest]

Thanks so much, Cam.

Sharon

[ ] Re:Sharon

Sharon,Oh, I do hope you are able to plan for a great celebration for your Mom and Dad this fall. I be it will lift your Dads spirits...and that is bound to help his immune system.Please keep us posted.Sending good thoughts your way.Take Care, Cam

[Guest guest]

Thanks so much for the support, . That's not a bad idea about having the celebration early. But my sister's family was just up at the beginning of July, from PA to ME, plus the senior complex where my parents live has a couple of nice function rooms, so Daddy wouldn't need to travel except just across campus. I think July is plenty early enough for me to put something nice together.

Sharon

[ ] Re:Sharon

Sharon,I am so sorry to hear your Dad is ill. You must be besides yourself. I hope that he can beat this cancer without it taking too much of a toll on him as you have told us how his scoliosis and it's complications has already taken alot out of him.Please know I am are sending you good thoughts.Take Care,

[Guest guest]

July? Duh, I meant November.

[ ] Re:Sharon

Sharon,I am so sorry to hear your Dad is ill. You must be besides yourself. I hope that he can beat this cancer without it taking too much of a toll on him as you have told us how his scoliosis and it's complications has already taken alot out of him.Please know I am are sending you good thoughts.Take Care,

[Guest guest]

I am so sorry for what you are going through, Sharon, but so glad that you are undetectable. As you stated, if I recall, you are a Geneotype 2, why does your doctor feel that you have to continue on for so long? Prayers for you, Sheena sharon <csharonxoxo@...> wrote: My side effects have continued to vary and some of them are worse as time passes. This horrible rash gets worse and the digestive upsets get worse. I'm entering week 28, I think and will stop this treatment when I reach month 9. I am tired of feeling ill all the time and of this eternal rash.I have reached svr, just hope it continues after treatment.Sharon>> thanks, Jackie and ..> that makes me feel better... because it seems as though those folks that do > not feel the side effects (in the beginning) seem to not respond.. (from what > I have seen)> But atleast I am undetectable.> thanks,> amy

Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos more.

[Guest guest]

:

Dear , So far I have not been able to link up with cite. I am not sure what I am doing wrong but I am not having any luck at all.

I am not sure which article was referring to. The one I have

copied below was written by Cindi, one of our members. Then the

one which by the member from South Africa (Joan) I will send in the

next email. Both are good to show family members.

Learning to Cope with a Loved One’s Achalasia

Outlined below are support suggestions from sufferers of Achalasia. Those quoted are from all stages of the disease and have had a variety of treatment options. Please read the information below and even print it out to discuss with your friend or family member who is suffering with this disease. A frank discussion can help both of you manage the illness more effectively.

While reading the information below, please keep in mind that Achalasia will affect the patient for the rest of their life. It is not only chronic, but it is a degenerative illness. Therefore, surgery and other treatments are not cures, but rather “stop-gap measures†to help the patient have a better quality of life.

Most sufferers will agree that one of the greatest aids to their quality of life is having friends and family members who are sensitive to the changes that have happened in their life as a result of Achalasia (A).

Things to do or say

Listening to the A. patient's explanation & BELIEVING it & trying to understand it (we find it unbelievable that we cannot drink, too!).

Maybe offer a massage coupon or something like that if I haven't tried it before. Stress reduction will help the painful esophageal spasms I have to deal with.

If we used to meet for lunch, invite me about the same time to do something else so our friendship stays the same. If I decline, come to my house and spend time with me anyway because I'm starting to withdraw. Call me more on the phone instead of sharing meals if I'm avoiding you.

Be available to drive me to appointments or tests if I can't drive myself home, sometimes we avoid the second opinion because we don't want to ask others for a ride. Offer and offer again... we can go to the tests alone, but may need to be dropped off and picked up.

Compliment us on how nice we look, losing weight for most is the only good thing. When we gain weight back after treatment, tell us we are looking healthier.

Bring us cookies and don't tell us how bad it is for our diet, it is often the only food that goes down. Find out what foods work for us. If drinking Hershey's syrup is the only thing that goes down, don't give us the evil eye or wonder about if we are taking vitamins (heck no those really hurt). Invite us for Thanksgiving and give us a glass of Hershey's syrup. We don't care about vitamins, necessarily. We want to do something and enjoy something while the rest eat.

Be patient while we eat slowly.

At a restaurant, don’t gawk when we down a pitcher of water with our meal and have to run to the bathroom several times.

When we go out to eat, in addition to ordering your regular coke order a glass of water too so I will have an extra glass of liquid in case the server does not keep my glass filled.

Suggest a place to dine that has a variety of foods not just a fast foods place where you’re limited to a sandwich or a salad, both of which can be problem foods for those with A.

Also, when eating in public, help assure we are near a bathroom. Sometimes the motility of our esophagus decides to work…..in reverse.

Do listen when we need to talk about our concerns, and be compassionate when were not feeling good. We know you don’t have the answers. We may just need to vent.

Laugh together, but not at our predicament. We already feel a bit freakish.

Above all that though is Prayer. That is the biggest unseen support we can get.

What NOT to do or say

Please don’t say "I thought you couldn't eat that" when the person with A is having a "good" day & managing something other than liquids.

Offering unsolicited advice (for example, insisting there is a problem as a result of drinking soda, etc…).

Please do NOT tell me about Slim-Fast, Ensure, any diet drink and ask if blending food works. A affects swallowing both liquids and solids. We have probably tried everything.

Do NOT tell me your natural product is better and give me samples. Do not try to sell me magnets, bracelets or any other latest gimmick, unless I've bought them before. Even modern medicine is still trying to figure out this extremely rare disease!

Don’t pretend you know what its like to have the stuck feeling, and how to get rid of it. Ours is different.

Don’t pat me on the back while I am having trouble swallowing– I’m not choking. I would rather not talk (or might not be able to) when I am having trouble….I’m probably trying to concentrate on getting it down or figuring the best route to the bathroom to get it back up.

Don't let the first thing out of your mouth be “Aunt Susie didn't swallow well and she had this terrible heartburn. But she got better with the right medication and I am sure yours will be fine too.†Rest assured, even trained doctors have probably confused our problem with the very common GERD mentioned here. Achalasia is quite different.

Don’t be upset when I can’t tell you what I can and cannot eat at times. Sometimes I don't even know myself. Believe me when I tell you this is a weird disease with no rhyme or reason.

Particularly for spouses or those closest to the patient:

NO! It is NOT getting better, and it isn't going to get better unless I take a break from you and the kids and get treatment....

Please read a little on your own….type the following words into Google so that you know the basics.

Achalasia

Dysphagia

Heller Myotomy

Manometry

When you find something that might help me send the link to me.

Go with me to the doctor, especially when I need to go to the surgeon.

Let me know I’m loved unconditionally…you have flaws, too!

Get a sneak peek of the all-new AOL.com.

[Guest guest]

Dear , So far I have not been able to link up with cite. I am not sure what I am doing wrong but I am not having any luck at all. Struggling to swallow in Ohiomichelle <mcnairmichelle@...> wrote: http://f1.grp.fs.com/v1/cKzJRp806CTr3GQjepcemofQeJmJJ9RkDiMER8xrwpH1dENdFcs5TsIdkQwGxlbPfy54LIfeT3DfUEWzNMgdqxz39nFR/Achalasia%20Family.docHey I did it!! I'm not usually the one that knows how to post the links. I just skimmed over this again and it's so very well written, you should print out a few copies to give out to your kids, friends, etc.This was in the files section (in this box to the left) and there are other things there that could be helpful to you. You may find something really good.I would definately give a copy to your daughter who I'm sure means well...Happy Swallowing!- in NC

[Guest guest]

Sharon, You are so sweet.. I hope in short order you will be feeling much better, you've sure been through it..You are one brave lady to struggle through as long as you have. Always good to hear from you.... Hugs, Sheena SHARON CROSBY <csharonxoxo@...> wrote: Hello, I'mSharon. Out of 8 months treatment by a month. Still losing my hair. It's getting very thin and comes out in my hand when I run my hand through it. The good news is that I did the same thing in 2000 when I last treated and it grew back very thick and with my usual lots of body. So, even tho I'm not happy with this, I really know (I think) that it will come back. My grandmother went bald, but started later than this. It's a female gene, usually passed to the males. I DID clear the virus and am glad, but not completely assured yet. When I continue to have clear tests, I'll relax a bit. I accidently came across a product that really helps

with the dry skin. My skin is 64 years old, but got quite rough with rash and dryness, I grabbed the hair product (shine) instead of the oil and put it on. It's far thicker than oil and did an excellent job of softening my skin. I'm going to continue to use it. I also use vitamin E oil and love the feel of it. I also add glycerin to the lotions and I'm beginning to feel like a hounds tooth (giggle) again. I've always had great skin and hair, but lost it with the drugs. I'm happy to have it coming back. Only lost 12 pounds, tho. Oh well, can't have everything. I'd have to go to Hollywood if I did. ha ha My body still aches continually, tho. Tylenol does not touch it. I have a massager and several heating pads and do stretching exercises several times a day to relieve it. It does not go away, but does ease a bit. I'll be happy when that

diminishes. Course, at my age I have arthritis, but the pain is centered in my back and hips mostly and in my calves. Well, I shortened the treatment, was so sick after the third transfusion and had dry heaves that I just gave up. That;s partly why I'm still a little worried about the clearance and will watch it closely. Gastro doc will not do more viral loads for a year, but my family doc will. Good luck to all you newcomers. It's worth the torture to have the dragon pushed into a dungeon. I was so very relieved to hear I had finally won a single battle. Hello to all the old hands. Liz, I do hope you are hanging on and not suffering too badly. SHeena, when I heard you would be a moderator, I was very pleased at the good sense that placed you there. You have a calm, compassionate wisdom that is so much needed on these

groups. Well, guess I've rambled on, still depressed and sooo tired, but that's actually minor in my mind now. Hugs and luck to you all. Sharon

Don't let your dream ride pass you by. Make it a reality with Autos.

[Guest guest]

Sharon, You are so sweet.. I hope in short order you will be feeling much better, you've sure been through it..You are one brave lady to struggle through as long as you have. Always good to hear from you.... Hugs, Sheena SHARON CROSBY <csharonxoxo@...> wrote: Hello, I'mSharon. Out of 8 months treatment by a month. Still losing my hair. It's getting very thin and comes out in my hand when I run my hand through it. The good news is that I did the same thing in 2000 when I last treated and it grew back very thick and with my usual lots of body. So, even tho I'm not happy with this, I really know (I think) that it will come back. My grandmother went bald, but started later than this. It's a female gene, usually passed to the males. I DID clear the virus and am glad, but not completely assured yet. When I continue to have clear tests, I'll relax a bit. I accidently came across a product that really helps

with the dry skin. My skin is 64 years old, but got quite rough with rash and dryness, I grabbed the hair product (shine) instead of the oil and put it on. It's far thicker than oil and did an excellent job of softening my skin. I'm going to continue to use it. I also use vitamin E oil and love the feel of it. I also add glycerin to the lotions and I'm beginning to feel like a hounds tooth (giggle) again. I've always had great skin and hair, but lost it with the drugs. I'm happy to have it coming back. Only lost 12 pounds, tho. Oh well, can't have everything. I'd have to go to Hollywood if I did. ha ha My body still aches continually, tho. Tylenol does not touch it. I have a massager and several heating pads and do stretching exercises several times a day to relieve it. It does not go away, but does ease a bit. I'll be happy when that

diminishes. Course, at my age I have arthritis, but the pain is centered in my back and hips mostly and in my calves. Well, I shortened the treatment, was so sick after the third transfusion and had dry heaves that I just gave up. That;s partly why I'm still a little worried about the clearance and will watch it closely. Gastro doc will not do more viral loads for a year, but my family doc will. Good luck to all you newcomers. It's worth the torture to have the dragon pushed into a dungeon. I was so very relieved to hear I had finally won a single battle. Hello to all the old hands. Liz, I do hope you are hanging on and not suffering too badly. SHeena, when I heard you would be a moderator, I was very pleased at the good sense that placed you there. You have a calm, compassionate wisdom that is so much needed on these

groups. Well, guess I've rambled on, still depressed and sooo tired, but that's actually minor in my mind now. Hugs and luck to you all. Sharon

Don't let your dream ride pass you by. Make it a reality with Autos.

[Guest guest]

Sharon , it is me "trishdish" tricia, after i did treatment for the 3rd time I started loosing more and more hair so went ot dr and the discoverd that my thyroid was out of wack...it was also making my hear race even when i was sleeping ...they killed my thyroid and put me on meds and my hair started comming back ...not long ago i told me dr that my thyroid meds needed to be adjusted and she asked why i thought that ..I told her one of many things was that my hair was starting to fall out in handfulls ..She said that is also a sign of menopause I told her great but check my thyroid ...She did and it was low ... Treatment can damage you thryoid so get it checked out !!!!!! SAVE A LIFE https://www.donatelifenw.org/register/ TODAY IS GOD'S GIFT TO YOU, WHAT YOU DO WITH IT IS YOUR GIFT TO HIM ! "I am responsible for my own well-being,my own happiness.The choices and decicions I make regarding my lifedirectly influences the quality of my days." Kathleen Andrus Check out our site: http://www.shepswoodncrafts.com/home.htmlhtt http://rslaserkits.com/

Need a vacation? Get great deals to amazing places on Travel.

[Guest guest]

Val, you caught me. The list is in the Feisty files, and is more than 4 years old.

That would be a great project for someone, to make a file where everyone can add their surgeons' names and contact info. Sort of like the Member Stories file.

Sharon

[ ] I just found this site and I need help finding a Dr. near SC or NY> > > Hi,> > Can anyone recommend a specialist in South Carolina or New York? and Can anyone tell > me if they qualified for disability with Scoliosis or a Harrington rod. I had a Harrington rod > put in for Scoliosis 22 years ago and have had pain from it ever since. I was told if I did not > have the surgery I would be crippled and probably would not live long past the age of 30. > The surgeon who did the surgery in Albany NY would not acknowledge my pain post > recovery and once said that "I was the only patient of his that ever complained about pain > from the rod". A few years ago he left the region without even referring me to a new > doctor. I went to see another Orthopedic Scoliosis Specialist in Albany and he wouldn't > even talk to me during the exam, he talked into a recorder saying "patient this and patient > that" in the end I was referred to pain management...I didn't go. > > I found a very nice Neurologist in Myrtle Beach but he won't investigate what could be > going on, he said an MRI wouldn't tell him anything because the metal would interfere. > There are two visible bulges sticking out of my back at the top and bottom of the rod and > he said to me "any doctor can just look at your back and see there's something very > wrong...you have things sticking out of your back!" (It's not very clinical I know, so many of > you know these complex medical terms for what is happening to your spine and I can only > describe things are bulging and it would take too long to describe the pain). He strongly > urged that I don't see another Orthopedic doctor because he said they will only want to do > more surgery and he feels they will only make things worse, he suggested I just try to treat > the pain. He has given me all the "good" drugs and they all make me vomit, the morphine > patch landed me in the ER with vomiting and a headache that made me feel like I was > going to die, the sad part was that it did make the back pain stop. I only just discovered > this word flatback on another site. I'm so hurt and angry that no Orthopedic doctor has > ever mentioned it, it sounds so much like it's happening to me.> > At present I still don't take anything for the pain, I use Ambien and Valium to get through > the nights, the best thing that I can do during the day is alternate between sitting in a > chair with good back support and walking around, having to stand still is horrible...I will > sit right on the ground if I have to, lying down makes it worse that's why I need something > to help me sleep. Thanks to a supportive boyfriend I have been able to stop working > because every job that I have tried makes the back pain too terrible. I just initiated the > process of applying for disability last year and the lawyer has told me that claims for back > problems are really hard to win and keeps > urging me to find a doctor that will make a good case for me. > > I am very afraid to have more surgery after reading some of the stories and I had a terrible > ordeal during the first surgery, I stopped breathing and they had to give me Narcan, I > woke up feeling everything and dry heaving in the ICU and they couldn't give me anything > for the pain, I had a tube in my back for a few days draining a blackish fluid from my back. > For those of you out there that are being told you need this surgery or the curve will just > progress I wish I could help you but I can't, not a day has gone by that I don't wish this > thing was out of me and I was back the way that I was but I know I had to have the > surgery, my Scoliosis was diagnosed at age 11 but I felt it twisting my body as early as age > 7, at age 13 I shot up at least 6 inches (my full hight is 5'8") and that's when the real pain > began, the right side with the hump felt like a sword going through my back and my right > breast, the doctor said it was the Scoliosis pulling my muscles. It was damned if I do and > damned if I don't. > > I would really like to find a doctor who would look at what's going on with my back and > really diagnose what's happening around the rod and causing the pain and what is > changing in my back to cause the bulging. We live in upstate NY and spend a few months > in Myrtle Beach in the winter but I have no idea who to see, I had to wait about 9 months > to get in to see the last guy who wouldn't even talk to me. I don't want to get my hopes up > again and see another cold Orthopedic doctor, has anyone seen an Orthopedic doctor that > says "yes the pain you feel from the rod is real and here is why"?> > Getting back to the "flatback"...some of you described this and it sounds like me, I feel like > I walk very straight and ridged but when I catch my reflection in a store window I'm bent > forward, also over the past few years I feel like I'm losing the natural curve in my neck, it > feels like it's becoming straight from where the rod stops to the base of my skull and my > neck pain is getting worse...is this happening to anyone? is it associated with flatback? .> > I would like to ask one more question...Has anyone had a lot of changes to their pelvis > from the rod? I started out with a lanky narrow body, after the surgery my tailbone stuck > out a lot (making me look like I'm sticking out my butt) and over the years the ball joint > part of my hips just got wider and wider and my pubic bone sticks out, I get pain in all > these areas and my hips look very disproportional to the rest of my body...am I alone? I > will appreciate any advice on any of these issues. Thanks and good luck to you all with > getting help with your pain, I know I don't need to describe the pain because so many of > you have described what it feels like, yet recently a doctor said to me "Do you know > they've discovered Scoliosis doesn't cause pain"...I was speechless. If I have one piece of > advice for anyone it is don't go into the examining room alone, I started bringing my > boyfriend in with me and the doctors stopped saying things like that to me.>

[Guest guest]

Dear and Sharon,

In the Database section of the site there in Membership overview is a list of members and their surgeons. We purposely haven't put out a list of surgeons per say, as that would put a stamp on them as" recommended" by the group as a whole and legally probably not a good idea. Alot of the really good surgeons names are spoken about here all the time by patients, but should be for opinions, not have surgery with this guy or gal, as surgeon selection is very personal. I would recommend my doc for an opinion, but woulldn't tell anyone he's better than any other surgeron spoken about here. So if any of the members haven't put their stories in the story section of the Files section do, and put your info into the database. Personal recommendations are great, members should also do their own homework about doc's, if they are SRS members, their memdical board standings and the like.

[ ] I just found this site and I need help finding a Dr. near SC or NY> > > Hi,> > Can anyone recommend a specialist in South Carolina or New York? and Can anyone tell > me if they qualified for disability with Scoliosis or a Harrington rod. I had a Harrington rod > put in for Scoliosis 22 years ago and have had pain from it ever since. I was told if I did not > have the surgery I would be crippled and probably would not live long past the age of 30. > The surgeon who did the surgery in Albany NY would not acknowledge my pain post > recovery and once said that "I was the only patient of his that ever complained about pain > from the rod". A few years ago he left the region without even referring me to a new > doctor. I went to see another Orthopedic Scoliosis Specialist in Albany and he wouldn't > even talk to me during the exam, he talked into a recorder saying "patient this and patient > that" in the end I was referred to pain management...I didn't go. > > I found a very nice Neurologist in Myrtle Beach but he won't investigate what could be > going on, he said an MRI wouldn't tell him anything because the metal would interfere. > There are two visible bulges sticking out of my back at the top and bottom of the rod and > he said to me "any doctor can just look at your back and see there's something very > wrong...you have things sticking out of your back!" (It's not very clinical I know, so many of > you know these complex medical terms for what is happening to your spine and I can only > describe things are bulging and it would take too long to describe the pain). He strongly > urged that I don't see another Orthopedic doctor because he said they will only want to do > more surgery and he feels they will only make things worse, he suggested I just try to treat > the pain. He has given me all the "good" drugs and they all make me vomit, the morphine > patch landed me in the ER with vomiting and a headache that made me feel like I was > going to die, the sad part was that it did make the back pain stop. I only just discovered > this word flatback on another site. I'm so hurt and angry that no Orthopedic doctor has > ever mentioned it, it sounds so much like it's happening to me.> > At present I still don't take anything for the pain, I use Ambien and Valium to get through > the nights, the best thing that I can do during the day is alternate between sitting in a > chair with good back support and walking around, having to stand still is horrible...I will > sit right on the ground if I have to, lying down makes it worse that's why I need something > to help me sleep. Thanks to a supportive boyfriend I have been able to stop working > because every job that I have tried makes the back pain too terrible. I just initiated the > process of applying for disability last year and the lawyer has told me that claims for back > problems are really hard to win and keeps > urging me to find a doctor that will make a good case for me. > > I am very afraid to have more surgery after reading some of the stories and I had a terrible > ordeal during the first surgery, I stopped breathing and they had to give me Narcan, I > woke up feeling everything and dry heaving in the ICU and they couldn't give me anything > for the pain, I had a tube in my back for a few days draining a blackish fluid from my back. > For those of you out there that are being told you need this surgery or the curve will just > progress I wish I could help you but I can't, not a day has gone by that I don't wish this > thing was out of me and I was back the way that I was but I know I had to have the > surgery, my Scoliosis was diagnosed at age 11 but I felt it twisting my body as early as age > 7, at age 13 I shot up at least 6 inches (my full hight is 5'8") and that's when the real pain > began, the right side with the hump felt like a sword going through my back and my right > breast, the doctor said it was the Scoliosis pulling my muscles. It was damned if I do and > damned if I don't. > > I would really like to find a doctor who would look at what's going on with my back and > really diagnose what's happening around the rod and causing the pain and what is > changing in my back to cause the bulging. We live in upstate NY and spend a few months > in Myrtle Beach in the winter but I have no idea who to see, I had to wait about 9 months > to get in to see the last guy who wouldn't even talk to me. I don't want to get my hopes up > again and see another cold Orthopedic doctor, has anyone seen an Orthopedic doctor that > says "yes the pain you feel from the rod is real and here is why"?> > Getting back to the "flatback"...some of you described this and it sounds like me, I feel like > I walk very straight and ridged but when I catch my reflection in a store window I'm bent > forward, also over the past few years I feel like I'm losing the natural curve in my neck, it > feels like it's becoming straight from where the rod stops to the base of my skull and my > neck pain is getting worse...is this happening to anyone? is it associated with flatback? .> > I would like to ask one more question...Has anyone had a lot of changes to their pelvis > from the rod? I started out with a lanky narrow body, after the surgery my tailbone stuck > out a lot (making me look like I'm sticking out my butt) and over the years the ball joint > part of my hips just got wider and wider and my pubic bone sticks out, I get pain in all > these areas and my hips look very disproportional to the rest of my body...am I alone? I > will appreciate any advice on any of these issues. Thanks and good luck to you all with > getting help with your pain, I know I don't need to describe the pain because so many of > you have described what it feels like, yet recently a doctor said to me "Do you know > they've discovered Scoliosis doesn't cause pain"...I was speechless. If I have one piece of > advice for anyone it is don't go into the examining room alone, I started bringing my > boyfriend in with me and the doctors stopped saying things like that to me.>

[Guest guest]

, I certainly see that point. I was talking about a section just for member recommendations, not official recommendations by the group. Just something easier to peruse than the member stories, which can be pretty long. Maybe a table, by city, with doctor names, members who have been their patients, comments by patients. Just a thought.

Sharon

[ ] I just found this site and I need help finding a Dr. near SC or NY> > > Hi,> > Can anyone recommend a specialist in South Carolina or New York? and Can anyone tell > me if they qualified for disability with Scoliosis or a Harrington rod. I had a Harrington rod > put in for Scoliosis 22 years ago and have had pain from it ever since. I was told if I did not > have the surgery I would be crippled and probably would not live long past the age of 30. > The surgeon who did the surgery in Albany NY would not acknowledge my pain post > recovery and once said that "I was the only patient of his that ever complained about pain > from the rod". A few years ago he left the region without even referring me to a new > doctor. I went to see another Orthopedic Scoliosis Specialist in Albany and he wouldn't > even talk to me during the exam, he talked into a recorder saying "patient this and patient > that" in the end I was referred to pain management...I didn't go. > > I found a very nice Neurologist in Myrtle Beach but he won't investigate what could be > going on, he said an MRI wouldn't tell him anything because the metal would interfere. > There are two visible bulges sticking out of my back at the top and bottom of the rod and > he said to me "any doctor can just look at your back and see there's something very > wrong...you have things sticking out of your back!" (It's not very clinical I know, so many of > you know these complex medical terms for what is happening to your spine and I can only > describe things are bulging and it would take too long to describe the pain). He strongly > urged that I don't see another Orthopedic doctor because he said they will only want to do > more surgery and he feels they will only make things worse, he suggested I just try to treat > the pain. He has given me all the "good" drugs and they all make me vomit, the morphine > patch landed me in the ER with vomiting and a headache that made me feel like I was > going to die, the sad part was that it did make the back pain stop. I only just discovered > this word flatback on another site. I'm so hurt and angry that no Orthopedic doctor has > ever mentioned it, it sounds so much like it's happening to me.> > At present I still don't take anything for the pain, I use Ambien and Valium to get through > the nights, the best thing that I can do during the day is alternate between sitting in a > chair with good back support and walking around, having to stand still is horrible...I will > sit right on the ground if I have to, lying down makes it worse that's why I need something > to help me sleep. Thanks to a supportive boyfriend I have been able to stop working > because every job that I have tried makes the back pain too terrible. I just initiated the > process of applying for disability last year and the lawyer has told me that claims for back > problems are really hard to win and keeps > urging me to find a doctor that will make a good case for me. > > I am very afraid to have more surgery after reading some of the stories and I had a terrible > ordeal during the first surgery, I stopped breathing and they had to give me Narcan, I > woke up feeling everything and dry heaving in the ICU and they couldn't give me anything > for the pain, I had a tube in my back for a few days draining a blackish fluid from my back. > For those of you out there that are being told you need this surgery or the curve will just > progress I wish I could help you but I can't, not a day has gone by that I don't wish this > thing was out of me and I was back the way that I was but I know I had to have the > surgery, my Scoliosis was diagnosed at age 11 but I felt it twisting my body as early as age > 7, at age 13 I shot up at least 6 inches (my full hight is 5'8") and that's when the real pain > began, the right side with the hump felt like a sword going through my back and my right > breast, the doctor said it was the Scoliosis pulling my muscles. It was damned if I do and > damned if I don't. > > I would really like to find a doctor who would look at what's going on with my back and > really diagnose what's happening around the rod and causing the pain and what is > changing in my back to cause the bulging. We live in upstate NY and spend a few months > in Myrtle Beach in the winter but I have no idea who to see, I had to wait about 9 months > to get in to see the last guy who wouldn't even talk to me. I don't want to get my hopes up > again and see another cold Orthopedic doctor, has anyone seen an Orthopedic doctor that > says "yes the pain you feel from the rod is real and here is why"?> > Getting back to the "flatback"...some of you described this and it sounds like me, I feel like > I walk very straight and ridged but when I catch my reflection in a store window I'm bent > forward, also over the past few years I feel like I'm losing the natural curve in my neck, it > feels like it's becoming straight from where the rod stops to the base of my skull and my > neck pain is getting worse...is this happening to anyone? is it associated with flatback? .> > I would like to ask one more question...Has anyone had a lot of changes to their pelvis > from the rod? I started out with a lanky narrow body, after the surgery my tailbone stuck > out a lot (making me look like I'm sticking out my butt) and over the years the ball joint > part of my hips just got wider and wider and my pubic bone sticks out, I get pain in all > these areas and my hips look very disproportional to the rest of my body...am I alone? I > will appreciate any advice on any of these issues. Thanks and good luck to you all with > getting help with your pain, I know I don't need to describe the pain because so many of > you have described what it feels like, yet recently a doctor said to me "Do you know > they've discovered Scoliosis doesn't cause pain"...I was speechless. If I have one piece of > advice for anyone it is don't go into the examining room alone, I started bringing my > boyfriend in with me and the doctors stopped saying things like that to me.>

[Guest guest]

Hi sharon

we were talking about a " liver flush' which gets rid of stones which allegedly

are in the liver and gallbladder.

It's a concontion of lemon juice, olive oil and epsom salts which you gulp down,

and the procedure

works overnight. I have described the procedure in detail in one of my earlier

posts no so long ago.

Helen

Re: reservations about the lilver flush

>

> Helen, after several to many flushes the hepatic stones fail to emerge,

> so they can't be produced by the foods you're taking for the flush.

> Also, the gallstones fail to emerge, and they are not soft but

> crystalline in the middle, which you wouldn't expect if the story were

> true.

>

> Duncan

>

>

>>

>> I have just read an article to the effect that the stones produced by

> the 'liver flush' may infact be stones which form when oil, lemon juice

> and digestive enzymes mix together and may not really be gallstones.

> Does anyone have a take on this? I can persoanlly vouch for the fact

> that the liver flush produces green stones - some as big as marbels -

> but I can't say for sure what these are?

>

>

>

>

>

> Get the name you always wanted with the new y7mail email address.

> www.7.com. au/y7mail

>

>

>

>

[Guest guest]

I don't have my gallbladder, and I had no stones

Re: reservations about the lilver flush

>>

>> Helen, after several to many flushes the hepatic stones fail to emerge,

>> so they can't be produced by the foods you're taking for the flush.

>> Also, the gallstones fail to emerge, and they are not soft but

>> crystalline in the middle, which you wouldn't expect if the story were

>> true.

>>

>> Duncan

>>

>>

>>>

>>> I have just read an article to the effect that the stones produced by

>> the 'liver flush' may infact be stones which form when oil, lemon juice

>> and digestive enzymes mix together and may not really be gallstones.

>> Does anyone have a take on this? I can persoanlly vouch for the fact

>> that the liver flush produces green stones - some as big as marbels -

>> but I can't say for sure what these are?

>>

>>

>>

>>

>>

>> Get the name you always wanted with the new y7mail email address.

>> www.7.com. au/y7mail

>>

>>

>>

>>

[Guest guest]

Hi Sharon,

It's so nice to see you posting again! I hope you move went well, and you're

getting settled bit by bit. I missed you-

 

Jeannie

[Guest guest]

I hope you're doing better !!

Just concerned I haven't seen you in a few days. Hope you're not worst

Love & .

HUGS

(just let me know that you're O.K if you're better)

VIVI

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

I hope you're doing better !!

Just concerned I haven't seen you in a few days. Hope you're not worst

Love & .

HUGS

(just let me know that you're O.K if you're better)

VIVI

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

I hope you're doing better !!

Just concerned I haven't seen you in a few days. Hope you're not worst

Love & .

HUGS

(just let me know that you're O.K if you're better)

VIVI

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Just want to let you know that you're in our prayers & hope you get over

this hump & remember that many, many here do know what you are going through &

wish we could some how aliviate your load.

Huggs

VIVI

**************Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

[Guest guest]

Just want to let you know that you're in our prayers & hope you get over

this hump & remember that many, many here do know what you are going through &

wish we could some how aliviate your load.

Huggs

VIVI

**************Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

[Guest guest]

Just want to let you know that you're in our prayers & hope you get over

this hump & remember that many, many here do know what you are going through &

wish we could some how aliviate your load.

Huggs

VIVI

**************Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

[Guest guest]

Dear Sharon, I am so sorry you are so down,but know how you feel.Sometimes we

just emotionally collapse for a while.Having this disease is hard enough without

adding all the meds we're on and experimenting with them first and trying to

carry on a semi-normal life.So be easy on yourself and know we are here for you

and love you and care how you feel.

love Elly

[Guest guest]

Dear Sharon, I am so sorry you are so down,but know how you feel.Sometimes we

just emotionally collapse for a while.Having this disease is hard enough without

adding all the meds we're on and experimenting with them first and trying to

carry on a semi-normal life.So be easy on yourself and know we are here for you

and love you and care how you feel.

love Elly

[Guest guest]

Dear Sharon, I am so sorry you are so down,but know how you feel.Sometimes we

just emotionally collapse for a while.Having this disease is hard enough without

adding all the meds we're on and experimenting with them first and trying to

carry on a semi-normal life.So be easy on yourself and know we are here for you

and love you and care how you feel.

love Elly

[Guest guest]

Hey, Sharon - it's so good to " see " you! Happy New year, Dear, and hope to

hear form you more often. Jackie )

**************One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. Try it now.

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