To Donna

[Guest guest]

Donna,

It could well be the end of it for many years. Enjoy your improved health. Many people get years of relief from symptoms. I read that some can expect 20 years and by that time they are bound to have improved techniques to help.

Good luck!

Lesley

Re: Glandular Fever> > (Infectious Mononucleosis)> > > > > > Dear Jerry - WOW - you are a great researcher!> > Maybe this is an important > > common denominator for all of us. I remember> > having a very rare type of mono > > when I turned 17 (and had never been kissed either> > LOL). How about everyone > > else? > >

[Guest guest]

Thankyou Lesly for your sincere

message - I read The Donkey Story and took heart too & you have both made me take a more positive attitude towads this - I know i'm going to be one of the lucky stories - any way as i'm 46 now in twenty years it won't matter as much. Thanks again

Donna

-- Re: To Donna

Donna,

It could well be the end of it for many years. Enjoy your improved health. Many people get years of relief from symptoms. I read that some can expect 20 years and by that time they are bound to have improved techniques to help.

Good luck!

Lesley

Re: Glandular Fever> > (Infectious Mononucleosis)> > > > > > Dear Jerry - WOW - you are a great researcher!> > Maybe this is an important > > common denominator for all of us. I remember> > having a very rare type of mono > > when I turned 17 (and had never been kissed either> > LOL). How about everyone > > else? > >

[Guest guest]

Hi Donna, I know how you are feeling. Life has been hectic for me lately. I live in a townhouse with my Mother and they (a company) is coming to install shutes and new insulation in our attic. Well, the attic is in my bedroom which means I had to clean out my entire closet! My closet and the rest of my room is a mess. We were planning to pull up the carpeting and polish the wood floor beneath instead we've had to deal with several 90+ degree heat spells here in Michigan and NOW the company is coming TOMORROW to install new insulation...*heavy sigh.....*

Needless to say my exercise hasn't been going too well although I did lose 3lbs from last week My Mom is also going to Nebraska in two weeks for get this, her 60th high school reunion! Most of our family lives in Omaha so she's going to be visiting them. I didn't feel like going and I really don't have the money for vacation this year (trying to save for one next year.)

I guess it's like (I think she said it) Robin said when you don't feel like doing it you just have to be like the Nike commercial and JUST DO IT! So today I'm going to finish cleaning the house before the men come tomorrow. But I am going to play volleyball tonight so I will be getting in some exercise.

Donna, why don't you just do have the dvd/video of SS???? If you feel up to it maybe you will end up doing the whole thing.

Come on Girl, you can DO IT!

Take care,

Jen

Donna M-P <donna112520@...> wrote:

I've been having a real off couple of weeks - betweenwork stress in June, my stupid ear (which is still notquite right, albiet better, in spite of 2 appointments-- I am to call my doctor by tomorrow if noimprovement to figure out what to do next!!) and myback strain, I've just been bummin' in general andabout workouts in particular. My motivation is prettygone right now. I was so psyched to start up a SlimSeries rotation this month, and I took this week "off"to recover and regroup, but I still don't think I'mgoing to want to do it next week either. I know Ishouldn't put pressure on myself - but I'm type A+ soit is hard for me to back off. My SS workouts aren'tgoing anywhere (that is the beauty of having workoutvideos/DVDs..) so what is my rush? Other than my A+personality that tells me that I

had made a plan andshould stick with it!!Anyone have any suggestions for a fun, no-stressrotation? I've been trying that this week w/ lots ofyoga, and it is helping, but I still have the sensethat I want to burn off alot of stress and tension!Plus I want to be in tip-top shape for my vacation atthe beginning of Sept when I'll probably not get muchin workout-wise for about 2 weeks! If my back werefeeling a bit more normal I think I'd hit kickboxinghard, but I'm afraid of straining it more.Ugh...just had to vent. I know there are folks w/bigger and greater problems than me in the world and Iam thankful that my problmes are all small ones, but Istill just wanted to vent!Thanks for listening!! :>DonnaP.S. On a happy note, in spite if having terribleeating habits since December, I haven't gained anyweight!!

:>__________________________________________________

[Guest guest]

Diane: I am 55 and plan to have the surgery.

Dianne <datsecondmountain@...> wrote:

My surgery in Mexico was also $8200. I was not really nervous mainly because I felt I had done a lot of research and the experiences of Dr Aceves' patients seemed so positive. I was impressed with his web site and all the great testimonials, especially Tracey M.'s, it was so detailed it really put me at ease. I got a lot of teasing about going to Mexico, but being self-pay it was my only option. I wouldn't trade the experience now. I was in contact with a couple of band Dr.s in the US and frankly they seemed too busy to really care and their staff folks were not too helpful. I have not had a perfect recovery, but my surgery was a little more difficult since I have had 2 previous abdominal surgeries. It is going along fine, just slower than I had hoped but I'm 50 too!! I was treated so great by

everyone associated with Dr.A, staff, hospital staff, and of course Dr.A.!!I would recommend him to anyone. Even my personal MD here at home was impressed with my recovery and the thorough job of pre-op tests that were done. He was nervous about me going to Mexico but knew I had researched it. He is now becoming a convert to the Mexican way!! :-) Let me know if you have any more questions!!P.S. I think the Centrum chewable vitamins are not very good either but that may just be me!!DianneSINCERELY,ROSALIE CODY

for Good Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

Thanks Dianne, I would like to talk a little bit more about this and how you are doing. Maybe we can chat sometime.

DonnaDianne <datsecondmountain@...> wrote:

My surgery in Mexico was also $8200. I was not really nervous mainly because I felt I had done a lot of research and the experiences of Dr Aceves' patients seemed so positive. I was impressed with his web site and all the great testimonials, especially Tracey M.'s, it was so detailed it really put me at ease. I got a lot of teasing about going to Mexico, but being self-pay it was my only option. I wouldn't trade the experience now. I was in contact with a couple of band Dr.s in the US and frankly they seemed too busy to really care and their staff folks were not too helpful. I have not had a perfect recovery, but my surgery was a little more difficult since I have had 2 previous abdominal surgeries. It is going along fine, just slower than I had hoped but I'm 50 too!! I was treated so great by

everyone associated with Dr.A, staff, hospital staff, and of course Dr.A.!!I would recommend him to anyone. Even my personal MD here at home was impressed with my recovery and the thorough job of pre-op tests that were done. He was nervous about me going to Mexico but knew I had researched it. He is now becoming a convert to the Mexican way!! :-) Let me know if you have any more questions!!P.S. I think the Centrum chewable vitamins are not very good either but that may just be me!!Dianne

[Guest guest]

Hi Donna,

my ex-husband is from Australia-but we can be friends anyways! LOL! How wonderful it is that you can take the scans with you. I had to sign a "release" form to get a freaking copy of a hearing test! (I'm in Canada)Yeah, the research is crazy intense. As I said, I'm sure I could do the surgery myself now! And I'm a single parent so it all falls on my shoulders. My son's Dad just heard the surgeon say "he needs surgery" so that's all the work he'll do.

Anyways, I'm leaning more towards doing it now (the date has been booked for months already), after joining this group, but I'm sure not looking forward to all the "after issues". Will keep you posted. Thanks again. Denna Poulos

From: Donna McFadden <donna.mcfadden12@...>cholesteatoma Sent: Saturday, July 18, 2009 4:32:58 AMSubject: Re: To Donna

Hi Denna

We were never given a 100% guarantee that it was c-toma. The scans didn't show that his bones were damaged, the hearing test did that.

I was told I didn't need to tell the 1st Dr I was going for a 2nd opinion. The Dr we went with asked whether we were happy for him to show the scans at a conference so he could get more opinions.

I'm in Australia & we carry our scans etc with us, so there was no need for any dr to know how many opinions I got. If they are 'professional' professionals then they should want you to feel totally comfortable & not have issues with other opinions being sought.

Like you I did not want to go ahead with the surgery if it wasn't absolutely necessary. But I really trusted the surgeon. (after I had other opinions & did lots of research myself)

Good luck Donna

From: Denna Poulos <supermom1rogers (DOT) com>cholesteatomaSent: Friday, 17 July, 2009 5:29:34 PMSubject: To Donna

Hi Donna,

thanks for this. Yes, I learned from the surgeon that a CT scan, while the gold standard for diagnosis, doesn't show the extent of the growth. How did you find out for sure that Joe had a c-toma? And I was told I was welcome to a second opinion but medical friends told me that if I did that I would be unlikely to be welcomed again in the first doctor's office, so I haven't got any other opinions!It appears that my son's "hearing bones" are intact so I'm looking for proof that a c-toma exists. Perhaps I'll never have that and have to find out through surgery. Which I have trouble accepting. Because a child can never go back to not having a hole in the back of his ear, and all that entails for the rest of his life.

Thanks again for sharing your story. I appreciate that!

From: Donna McFadden <donna.mcfadden12>cholesteatomaSent: Thursday, July 16, 2009 8:54:13 PMSubject: Re: newbie

Hi Supermum,

I feel for you. My 5 year old son had surgery 2and a half weeks ago & believe me I did all I could to avoid it, but we had no choice. Like your son, Joe suffered from hearing loss, but that was all, no ear infections etc.

His recovery has been amazing, he wanted to go back to school 2 days after surgery (of course I said no).

He had a combined approach ie through the ear canal & canal wall up, which means he will be able to swim etc & he has had no dizziness. He had some minor loss of taste, but that has returned.

But he will have to have another surgery in 18 months to check for regrowth.

My understanding is that CT scans & MRI's don't show the growth effectively. After many opinions we were told by ALL surgeons we had contact with, that the only way to be sure is through surgery.

I do wonder if I had not taken 6 months to decide whether his 'hearing bones' would have still been functioning.

We are all feeling more relaxed and happy now that the worst is over.

Good luck Donna

From: "supermom1rogers (DOT) com" <supermom1rogers (DOT) com>cholesteatomaSent: Friday, 17 July, 2009 7:19:13 AMSubject: newbie

Hi All,11 year old son, suspected C-toma-CT scan 4 years ago clear-surgeon won't do another scan before surgery. mild hearing loss, enlarged vestibular aquaduct-lots of buildup of material in ear-looks like rice cakes! Experimenting with EFA and probiotics-ear seems to rid itself of wax buildup better with lots of EFA's. Hasn't had lots of infections-has huge adenoids and tonsils-retracted drums probably because of blocked eustation tubes. I would like to avoid surgery, at this time, as other than buildup of material in ear and mild hearing loss child is fine-no vertigo, facial paralysis issues, no infections.. . .everything I've read over last few months about c-toma surgery is gruesome and outcome has poor quality of life for a young person and forever more.. I understand the risks if left untreated but surgeon (great guy-bigwig from over the pond currently at Sick Kids toronto) insists on surgery. (looking for apples one finds apples, no?)

Help! Is "watching and waiting" appropriate? Has anyone tried to discover WHY they build up keratin-perhaps, as I speculate, an essential fatty acid metabolism dysfunction? Are any naturopaths working on this? History of paternal allergies, asthma, arthritis, exzema, smoking, ulcerative colitis-maternal- borderline lupus ANA-is there an autoimmune component to this problem? Any help would be most appreciated! Thank you so much.

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