RE: Oesophagectomy group. How's it going?

[Guest guest]

Hi Steve and Esophagectomy Gang…

I realize I definitely need this surgery

but have chosen to hold off until May or June 2007, due to some prior

commitments and life situations I must and wish to deal with prior to having

surgery. In viewing the emails from folks in this sub-group, I did not

realize that a few of us have actually had the surgery. I would really

like to hear from these folks and learn about their postop course.

Like , I am also trying to seek a

second opinion but am not sure my insurance will approve it. The average

cost for a consult with a surgeon in the Los

Angeles area, no matter what their specialty, is about

$500.00, not including any diagnostic testing they will want to have performed

even if you have had the same testing recently. However, with what I know

about this progressive disease, for a few of us esophagectomy is inevitable and

necessary.

I know I do not respond very often to the

emails but I do read most of them and appreciate the information people give. I

look forward to hearing from the group.

Z.

From: achalasia [mailto:achalasia ] On Behalf Of Steve Lennox

Sent: Saturday, August 19, 2006

2:40 AM

achalasia

Subject:

Oesophagectomy group. How's it going?

Dear oesophagectomy friends,

I have made a note of 8 of us so far awaiting this procedure (or

considering it) and 3 that have had it. That's getting a pretty

meaningful number.

Just checking on how everyone is doing and asking if anyone is closer

to a decision. has posted about how he is looking for another

opinion, is anyone else?

I am simply notching up time whilst I await the November surgery and

still reading everything I can get my hands on (and causing more and more

questions).

Has anyone heard from ? He has gone very quiet. Is he

OK? Hopefully he is cured and enjoying a life of apple pie and

custard.

STEVE

[Guest guest]

Suzan,

I know what you mean about wanting to do a few things before you have your surgery. I am organising a rush wedding and at least two holidays before my ate in November.

I am interested that you can hold off until next year. Are you relatively OK now then? I had a new problem this weekend. I totally blocked off casuing pain ad the usual shortness of breath but this time I coughed up some blood. I can only presume that my food full oesophagus casued some tracheal decompression and that caused some bleeding internally. It was not a lot at all, but it bothered me a great deal (I have written to my surgeon today). I am worried that my large oesophagus may be causing other problems. I now have a raging headache that I am attributing to either a rubbish protein intake, caffeine withdrawl or stress.

This wretched disorder. I was watching a programme on TV on multiple sclerosis and actually thanked my lucky stars that I didn't have that so I still have it all in perspective...just.

What made you realise you definately need the surgery?

STEVE

-- Original Message ----From: smichele2 <smichele2@...>achalasia Sent: Sunday, 20 August, 2006 10:35:07 PMSubject: RE: Oesophagectomy group. How's it going?

Hi Steve and Esophagectomy Gang…

I realize I definitely need this surgery but have chosen to hold off until May or June 2007, due to some prior commitments and life situations I must and wish to deal with prior to having surgery. In viewing the emails from folks in this sub-group, I did not realize that a few of us have actually had the surgery. I would really like to hear from these folks and learn about their postop course.

Like , I am also trying to seek a second opinion but am not sure my insurance will approve it. The average cost for a consult with a surgeon in the Los Angeles area, no matter what their specialty, is about $500.00, not including any diagnostic testing they will want to have performed even if you have had the same testing recently. However, with what I know about this progressive disease, for a few of us esophagectomy is inevitable and necessary.

I know I do not respond very often to the emails but I do read most of them and appreciate the information people give. I look forward to hearing from the group.

Z.

From: achalasia@grou ps.com [mailto: achalasia@grou ps.com ] On Behalf Of Steve LennoxSent: Saturday, August 19, 2006 2:40 AMachalasia@grou ps.comSubject: Oesophagectomy group. How's it going?

Dear oesophagectomy friends,

I have made a note of 8 of us so far awaiting this procedure (or considering it) and 3 that have had it. That's getting a pretty meaningful number.

Just checking on how everyone is doing and asking if anyone is closer to a decision. has posted about how he is looking for another opinion, is anyone else?

I am simply notching up time whilst I await the November surgery and still reading everything I can get my hands on (and causing more and more questions).

Has anyone heard from ? He has gone very quiet. Is he OK? Hopefully he is cured and enjoying a life of apple pie and custard.

STEVE

[Guest guest]

Hey Steve and my fellow Achalasians, Doesn't "Achalasia" sound like a long lost continent or country? Anywayz, sorry i have been out of the loop for a bit. My ankle has been flaring up here & there and they had to do testing (MRIs, X-rays, etc.) Turns out I got a osteochondral defect and they told me I have to have surgery...don't worry its minor minor out-patient surgery. After surviving the esophagectomy....surgeries like that aren't really making me nervous. Oh, my doctors also denied me immediate surgery for my ankle till i am 100% recovered from my esophagectomy which is unknown for me (maybe by Jan.) because i have been getting some physiological side effects of the esophagectomy like hypoglycemia, faint spells, breathing difficulties sometimes, minor dumping syndrome, fatigue, which is all normal after this kind of surgery...but if it progresses longer, then i have to see my

doctor(s). Overall, i'm still a bit weak from the surgery, but i'm trying to stay active. I just started college again (part-time of course) to finish up my certificates and so far so good. Hmm...i'm not going to look for a job yet probably till next year when i'm 100% again. My eating is better as long as i eat small meals, soft or semi-solid foods, and i chew it very very well...So again, i've been MIA cuz i been so busy relaxing and keeping myself occupied at the same time. I guess i'm feeling relieved that its over...i waited too long to get this procedure, but eventually my symptoms were about to get worse and I would have no alternative...keep me updated...and ask me any questions about this procedure pre and post op. thanks a bunch,

[Guest guest]

Dear Steve, I am glad that you have written to your Surgeon. I think you ought to have some sort of attention before November. You must be feeling quite distressed about the blood - incidents like this don't make for peace of mind. It would be better is you could have some sort of investigation (endoscopy?) soon to put your mind at rest. You would not be the first on this Board to see blood. It may be due to some ulceration perhaps. You have such a lot on at the moment. It must not be doing your stress levels much good. Sounds a bit corny, but I reckon you need a good relaxation CD to bring them down, daily if you can. Most headaches are caused by tension (very understandable) or dehydration. Try to keep

up your water levels if you are able. With love from Ann up in the North of England XX Steve Lennox <lennoxsteve@...> wrote: Suzan, I know what you mean about wanting to do a few things before you have your surgery. I am organising a rush wedding and at least two holidays before my ate in November. I am interested that you can hold off until next year. Are you relatively OK now then? I had a new problem this weekend. I totally blocked off casuing pain ad the usual shortness of breath but this time I coughed up some blood. I can only presume that my food full oesophagus casued some tracheal decompression and that caused some bleeding internally. It was not a lot at all, but it bothered me a great deal (I have written to my surgeon today). I am worried that my large oesophagus may be causing other

problems. I now have a raging headache that I am attributing to either a rubbish protein intake, caffeine withdrawl or stress. This wretched disorder. I was watching a programme on TV on multiple sclerosis and actually thanked my lucky stars that I didn't have that so I still have it all in perspective...just. What made you realise you definately need the surgery? STEVE -- Original Message ----From: smichele2 <smichele2sbcglobal (DOT) net>achalasia Sent: Sunday, 20 August, 2006 10:35:07 PMSubject: RE: Oesophagectomy group. How's it going? Hi Steve and Esophagectomy Gang… I realize I definitely need this surgery but have chosen to hold off until

May or June 2007, due to some prior commitments and life situations I must and wish to deal with prior to having surgery. In viewing the emails from folks in this sub-group, I did not realize that a few of us have actually had the surgery. I would really like to hear from these folks and learn about their postop course. Like , I am also trying to seek a second opinion but am not sure my insurance will approve it. The average cost for a consult with a surgeon in the Los Angeles area, no matter what their specialty, is about $500.00, not including any diagnostic testing they will want to have performed even if you have had the same testing recently. However,

with what I know about this progressive disease, for a few of us esophagectomy is inevitable and necessary. I know I do not respond very often to the emails but I do read most of them and appreciate the information people give. I look forward to hearing from the group. Z. From: achalasia@grou ps.com [mailto: achalasia@grou ps.com ] On Behalf Of Steve LennoxSent: Saturday, August 19, 2006 2:40 AMachalasia@grou ps.comSubject: Oesophagectomy group. How's it

going? Dear oesophagectomy friends, I have made a note of 8 of us so far awaiting this procedure (or considering it) and 3 that have had it. That's getting a pretty meaningful number. Just checking on how everyone is doing and asking if anyone is closer to a decision. has posted about how he is looking for another opinion, is anyone else? I am simply notching up time whilst I await the November surgery and still reading everything I can get my hands on (and causing more and more questions). Has anyone heard from ? He has gone very quiet. Is he OK? Hopefully he is cured and enjoying a life of apple pie and

custard. STEVE

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[Guest guest]

Hi Steve (and ectomy gang),

Although my disease is quite advanced, I am not as serious at this time

as you seem to be. I am very symptomatic, however, with constant pain and discomfort,

which varies in intensity. I intermittently have mild shortness of breath and

chest tightness, as well as tightness in my throat (a choking feeling at

times). My esophagus is huge and it is just a matter of time before I progress

to a much more serious state, which I do not think will occur overnight.

Esophagectomy for me is inevitable but I don’t think things will progress

to a dangerous status for some time yet. I am opting to have the surgery

in June 2007, after a complete a 9-month course at UCLA. My surgeon is okay

with this unless something changes between now and then. Plus, this will

give me time to get a second opinion, for which I am awaiting authorization from

my insurance company. In the US, by law your insurance carrier

must allow you to have a second opinion when it comes to major surgery. I am

also working on getting in better physical condition by doing lots of water

aerobics and swimming. I do not have any other major health issues and wish to

keep it this way. I hope this answers some of your questions.

Z.

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