Re: Re: Debbi-going for surgery

[Guest guest]

From: SteveWhat type of surgery are you having? My doctor, Dr. s of USC (specialist in achalasia),wants me to have a highly invasive surgery where the esophagus is removed and replaced with a section of the colon that is tunnelled under the chest cavity (to keep its blood supply). He said the incision would sstart from behind my ear to my lower abdomen. Naturally I declined, and had a laproscopic myotomy with funduplication, which did nothing. All the residents had a field day with me, saying that I was the most advanced "specimen" they had ever seen.

Steve, in Suzi's daughter's case, she's relatively newly diagnosed and having a myotomy. There are a few other people in this group who have either had the esophagectomy or who are on the short list for it. I don't recall anyone else talking about a 2-foot incision, though. Maybe some of the others will chime in here w/ their experiences, too.

This hell started when I was 14 (1981), when I had one dilation (which the doctors said would be the only treatment offerred, ever).If it's any consolation, I wished I had surgery back then, rather than let my condition worsen with all the complications--- apiration, rotting food in my lungs, sinuses; bronchitis and now emphysema.

That's what I wish I had done, too. Hindsight is 20/20, isn't it? In my case, I was stupid and just blindly took my doctor's word as gospel. Turns out he had an ulterior motive for giving me the advice he did -- he was doing a study of his own, and wanted me as a "subject" for his research. So he didn't tell me about all my options and what the success rates and long-term results would be of each procedure, he just basically said "this is what you're gonna do" and I naively signed on the bottom line.

That's why I try to give new members here as much info as I can, so they get to make an EDUCATED decision. I don't have any stake in which type of treatment anyone chooses to try..... I just want them to make the best decision for THEIR situation, not the best decision for their doctor's whimsy!

Welcome to the group!

Debbi in Michigan

[Guest guest]

Steve wrote:

>... I wished I had surgery back then, rather

>than let my condition worsen with all the complications--- apiration,

>rotting food in my lungs, sinuses; bronchitis and now emphysema.

Steve, I am interested in what, if anything, you have been told about your

emphysema. I have looked for this on the internet and the only things I

have found are mostly comments in passing in the context of other subjects.

Is this from mycobacterial infections due to aspiration? Do you have any

information about rates of occurrences in achalasia?

For those that are interested, See this case study:

Fever, cough, and bilateral lung infiltrates.

http://www.findarticles.com/cf_dls/m0984/2_123/98248808/p1/article.jhtml?term=

or

http://makeashorterlink.com/?W1CB253D6

" nontuberculous mycobacteria are increasingly recognized as causes of

pulmonary infection in patients with achalasia. Stasis of food in the

esophagus and recurrent aspiration appear to play a primary role in the

nontuberculous mycobacteria infection in these patients. "

Also see:

The Spectrum of Pulmonary Nontuberculous Mycobacterial Defection

http://www.thoracicrad.org/STR_Archive/PostGraduatePapers/WT.html

" Patients with Achalasia appear to have radiographic appearance of

infection which is quite different from other patients with pulmonary NTMB

infection. The majority of reports demonstrate cases with patchy bilateral

alveolar opacities which resemble aspiration pneumonia. "

notan

[Guest guest]

wrote:

>...they said it looked like I had a " Pleural Effusion " . ... the

>pulmonologist just dismissed it as my diaphragm being moved up a

>little. Should I seek other treatment or does that sound right? Will I

>suffer this cough for ever? ...

The surgery could cause pleural effusion. That is one reason for a chest

tube after surgery. I don't know if that explains the cough or not. Did he

say why it would make you cough? Does he expect you to get better? Will you

be checked again at a later date? If he has you on a plan to get you better

I would stick with it (just my way, not that I have ever had anything

related). If not, you may want to see if someone has an idea about getting

you better, even if it means just waiting for your body to adjust.

Achalasia puts us at a higher risk of lung infections. Some of these could

cause pleural effusion and or a cough. I would think, just a guess, that

they would have seen something on the x-rays and figured out if you had

damage from infections. It may be something to keep in the back of your

mind in case you don't get better.

They are finding connections between diseases of the lungs and esophagus

that were unexpected. It seems that even something like asthma can be

effected by something like GERD (studies suggest GERD makes asthma worse,

treating asthma can make GERD worse and treating GERD can make asthma

better). So, who knows what surprising connections achalasia my have for

our lungs.

notan

[Guest guest]

Steve wrote:

My pain-management therapy WORKS for me; smooth-wall muscle-relaxants usually aren't considered or tried because doctors are too fearful of the wrath of the DEA or having their medical licenses examined. Ever since the on Narcotic Act of 1913, medicinal care has succumbed to politics, demagoguery and now insurance-driven motivations.

Steve, I think that a doctor's willingness to give an off-list prescription is more a function of his/her willingness to have an open mind than it is a fear of the DEA or the licensing board.

If a drug is legal to dispense in the US, the doctor is free to dispense it at his discretion provided it's not harming the patient. They can't give you addictive drugs for pain when you don't have pain, b/c that would be harming the patient.

I've had three different family doctors (not GI specialists) and one GI specialist who were willing to prescribe me various drugs for my achalasia with no problems whatsoever. In some cases we were playing around/experimenting to find something that helped, and in one case it was a new doc who had no problem giving me nifedipine when I told him about my NCCP's (non-cardiac chest pains) and that it helped stop my pains when taken on an as-needed basis.

Let's not dwell on minor things, such as "I'm so afraid of surgery," etc. If something needs to be fixed, fix it.

I agree that it's not good to dwell on things, but I don't think that surgery should be considered "minor" either. Anesthesia can cause bad reactions in a small percentage of people. Some people are more prone to bleeding out. Antibiotic-resistant bacterial infections are increasingly common in healthcare settings.

In my own case, I've had several surgeries in my lifetime and so I know what to expect, of the surgery/recovery process, how anesthesia reacts in my body, hospital stays, etc. But for someone who has never had surgery and who isn't familiar with the hospital setting, surgery can be a VERY big deal. Just thought I'd point out that everyone is coming from a different perspective on things.

Debbi