Re: Check out Entrez PubMed - For

[Guest guest]

Luna,

THANK YOU SO MUCH for sending along this information! Even though

I think I've read this article before, your timing was perfect! This

has been a discouraging day.

Dr. Achkar finally called my husband back. We had left messages,

telling him how the Trazadone had helped only slightly for about 2

weeks last month (on his bad days, spasms lasted only 10-12 hours not

16-18 hours, he had slightly improved appetite and energy and no

spitting up foam on his good days). A month after his local GI

recommended cutting back from 150 mg. to 100 mg. (which my husband did

since Trazadone makes it hard to wake up in the morning), he reverted

back to his old severity of symptoms and lost a few more pounds.

*Note to Debbi: He took himself off of Librax after reading about it

and realizing that it wasn't helping him.* Anyway, Dr. Achkar told

him today that as long as Trazadone is helping at all, he should stay

on it BECAUSE HE HAS NOTHING ELSE TO OFFER MY HUSBAND. I was so upset

by this, that I was almost angry with my husband. It is so hard to be

the one watching your loved one get worse! I went through this with

my mother and as many of you know, she passed away this September (not

esophagus-related, but still hard to watch). I told him he needed to

do SOMETHING, be it increase his Trazadone, seek alternative medicine

options, or seek other medical opinions. After some discussion, he

said he'd be willing to discuss his case with surgeons because he is

sick of this medication. We decided to start with the thoracic

surgeon that his local GI recommended out of Beaumont Hospital. Using

what I've learned from the group, we've decided to hit this doc with

lots of questions (i.e. Have you treated any other DES patients? How

many? What were the outcomes?, etc.) I'm not expecting this one to

have seen too many DES patients, but maybe this will lead us to a

surgeon who has. In the meantime, I'll keep doing research (starting

with this PubMed article) to look for other surgeons and/or treatments.

Sorry this is so long, but I feel a little better that we will be

doing SOMETHING to keep working a treatment for him! I work in a

dental office and one of my patients today told me her baby will need

surgery for a rare condition (scoliosis in a 9 month old). She wasn't

sure how to find a qualified surgeon, so I told her to e mail the

surgeon she trusted that moved out of state and try PubMed. I guess I

should follow my own advise and keep working on my husband's case.

Thanks again, everyone for helping empower us to keep searching for

help for him (and giving us ideas on how to do it)!!

in Michigan

>

> _Click here: Entrez PubMed_

>

(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstr\

act & list_uids=15897439 & query_hl=3 & itool=pubmed_

> docsum)

> here is an article I found which talks about the

> Heller Myotomy for DES. It was published in May and

> two of the authors are Dr. Patti and Dr. Ostroff, We've

> heard about these two doctors here on the achalasia board.

>

> There are also articles which dispute this but they are older.

>

> If you go to Pubmed. com and type in " myotomy for achalasia

> and DES " you'll find these.

>

> That you might like to read them if you have not seen them

> already and give you something to discuss with your doctor

> at TCC.

>

> Maggie

> Alabama

>

[Guest guest]

Dr Patti did my myotomny

Dave

--- LunaIam2@... wrote:

> _Click here: Entrez PubMed_

>

(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstr\

act & list_uids=15897439 & query_hl=3 & itool=pubmed_

> docsum)

> here is an article I found which talks about

> the

> Heller Myotomy for DES. It was published in May

> and

> two of the authors are Dr. Patti and Dr. Ostroff,

> We've

> heard about these two doctors here on the achalasia

> board.

>

__________________________________________

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[Guest guest]

,I understand your misery. Forgive me, but is Beaumont a large hospital? If it is, fine, but if just a regional hospital I think you are wasting your time. (Sorry, I'm blunt)Call Dr. Fuller at Cedars in LA, Call the other well known surgeons. Really... Really Really. They will give you some answers. If Beaumont is large, I apologize, but I haven't heard of anyone having surgery there. The good surgeons you hear about here know the esophagus.... There are other approaches than what Cleveland Clinic offers. Beaumont, if not experienced w/ esophagus issues is just a delay and further emotional stress.Forgive my bluntness. At this point, location is not your major issue... you may have to face a trip.Sandy in 74 degree So Cal. bright sun, took down outside lights yesterday in 70 degree weather. This is absolutely the best time of year to come here. Signing of for California Tourism Board.> >> > _Click here: Entrez PubMed_ > >> (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=15897439 & query_hl=3 & itool=pubmed_> > docsum) > > here is an article I found which talks about the> > Heller Myotomy for DES. It was published in May and> > two of the authors are Dr. Patti and Dr. Ostroff, We've> > heard about these two doctors here on the achalasia board.> > > > There are also articles which dispute this but they are older.> > > > If you go to Pubmed. com and type in "myotomy for achalasia > > and DES" you'll find these.> > > > That you might like to read them if you have not seen them> > already and give you something to discuss with your doctor> > at TCC.> > > > Maggie> > Alabama> >>

[Guest guest]

-- Have you called and talked to Dr. Rice at TCC?If your Hubby really is NOT able to manage his DES with medications and such, it seems to me that an esophagectomy would be in order -- I find it odd that Dr. Achkar didn't mention that as at least a possible treatment?

We already know that an esophagectomy is NOT the end of the world, and it IS possible to go on and live an active, healthy life without an esophagus, and that's something that he is NOT able to do right now with his constant DES symptoms.

And as in all things, as you've learned, ask-ask-ask and research your buns off. You know where to find us if you need to bounce an idea off us!Debbi

Re: Check out Entrez PubMed - For

Luna, THANK YOU SO MUCH for sending along this information! Even thoughI think I've read this article before, your timing was perfect! Thishas been a discouraging day. Dr. Achkar finally called my husband back. We had left messages,telling him how the Trazadone had helped only slightly for about 2weeks last month (on his bad days, spasms lasted only 10-12 hours not16-18 hours, he had slightly improved appetite and energy and nospitting up foam on his good days). A month after his local GIrecommended cutting back from 150 mg. to 100 mg. (which my husband didsince Trazadone makes it hard to wake up in the morning), he revertedback to his old severity of symptoms and lost a few more pounds. *Note to Debbi: He took himself off of Librax after reading about itand realizing that it wasn't helping him.* Anyway, Dr. Achkar toldhim today that as long as Trazadone is helping at all, he should stayon it BECAUSE HE HAS NOTHING ELSE TO OFFER MY HUSBAND. I was so upsetby this, that I was almost angry with my husband. It is so hard to bethe one watching your loved one get worse! I went through this withmy mother and as many of you know, she passed away this September (notesophagus-related, but still hard to watch). I told him he needed todo SOMETHING, be it increase his Trazadone, seek alternative medicineoptions, or seek other medical opinions. After some discussion, hesaid he'd be willing to discuss his case with surgeons because he issick of this medication. We decided to start with the thoracicsurgeon that his local GI recommended out of Beaumont Hospital. Usingwhat I've learned from the group, we've decided to hit this doc withlots of questions (i.e. Have you treated any other DES patients? Howmany? What were the outcomes?, etc.) I'm not expecting this one tohave seen too many DES patients, but maybe this will lead us to asurgeon who has. In the meantime, I'll keep doing research (startingwith this PubMed article) to look for other surgeons and/or treatments. Sorry this is so long, but I feel a little better that we will bedoing SOMETHING to keep working a treatment for him! I work in adental office and one of my patients today told me her baby will needsurgery for a rare condition (scoliosis in a 9 month old). She wasn'tsure how to find a qualified surgeon, so I told her to e mail thesurgeon she trusted that moved out of state and try PubMed. I guess Ishould follow my own advise and keep working on my husband's case. Thanks again, everyone for helping empower us to keep searching forhelp for him (and giving us ideas on how to do it)!! in Michigan