Re: Introducing Myself -

[Guest guest]

Hello and welcome! Your story sounds so familiar, I just read

McCarthy's Louder than words book and was so upset how completely

stupid some of the neurologists are. Many never study developmental

disorders or only read about speech disorders in school without having

to complete any practicals. A good developmental pediatric neurologist

is hard to find and after the third one I am convinced I might actually

know a bit more!

Good luck with your speech therapy.

April

[Guest guest]

April,

Someone just gave me a good name in Flemington. If you are interested

email me offlist.

Liz

Don't give up. We need these docs and if we work together they will

know our kids and be in a better position to help them.

>

> Hello and welcome! Your story sounds so familiar, I just read

> McCarthy's Louder than words book and was so upset how completely

> stupid some of the neurologists are. Many never study

developmental

> disorders or only read about speech disorders in school without

having

> to complete any practicals. A good developmental pediatric

neurologist

> is hard to find and after the third one I am convinced I might

actually

> know a bit more!

>

> Good luck with your speech therapy.

> April

>

[Guest guest]

Hi ;

I am so happy to hear that you are able to eat anything now!!!! I think about

everyone on here often, but rarely do I sign on these days.

(Chet's Wife)

>

> Welcome ita,

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> Thank You for sharing your story with us. You sound very positive for

everything you have been through! Enjoy your ability to eat! I suffered for 16

years and had my esophagectomy on October 1st, 2007. I can eat anything now.

>

> Thanks Again for introducing yourself and sharing,

>

> Best Wishes,

> .

>

>

> achalasia@...: mme_chantilly@...: Wed, 27 Feb 2008 07:50:27 +0000Subject:

Introducing myself

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> I joined the group about three weeks ago, which is when I came homefrom the

hospital after having a Heller Myotomy in a rather emergencysituation. I don't

qualify for the usual Achalasia patient. I startedhaving difficulty swallowing

after I had a bariatric bypass surgery inFeb. 2002. Doctors did a few tests,

mainly, a swallow test. But theywere so focused on whether or not I had any

leaks from the bypasssurgery that I think they missed what I was having

difficulty with.After a few other procedures, gallbladder, hystserectomy and

anendoscopic procedure to check my pouch out, the swallowing conditionworsened

to the point that swallowing pills was extremely difficult.And as you know some

of us just need our medications. Dr. of Brigham and Women's

had those swallowtests done where they insert that probe through the nose. I had

theone where they do that in the office and watch and then I had one donewhere

the wire is inserted through the nose and down to the stomach.Inconclusive

results. I continued through to have a pouch repair doneendoscopically with the

result of things as far as I knew to be muchthe same. That was during a waiting

period for approval on a workman'scomp related surgery on my neck. After the

neck surgery, my symptomsseemed to explode. I couldn't use my arms in upper body

work in PTwithout later having problems with what I called gushing,

liquidscoming up through my nose. I was aspirating food all the time. Then asa

couple of months went by I began throwing food up.I wasn't able to sleep prone

after this surgery on my neck. I thoughtit all went back to this surgery and was

trying to get workman'scompensation insurance company to fix it. They eventually

denied thetests the Doctors were asking for. I wouldn't have insurance until

Jan1st, so I waited...but was throwing food and water up. Couldn't gethydrated.

It was hit and miss until the final week of December. Iwasn't getting anything

down. Those last two months I was droppingweight like crazy, my memory was

fritzing out, which I thought was dueto pain meds. I didn't realize it but I was

slowly starving to death.Jan. 4, 2008 brought me to my primary care physician

now that I hadmedical insurance. We set up tests for blood, swallow tests

withbarium, and a CT scan. On the 5th, I had the blood work done, went todinner,

where surprisingly I was able to eat..or rather what I atestayed down. We had

eaten at a restaurant and then gone home. Oncehome I began to be uncomfortable,

then in excruciating pain that hadme having my boyfriend call for an ambulance.

We went on a very bumpyand painful ride to the hospital. I had a kidney stone

and a very badUTI along with it. I was there for hours. Then they released me to

gohome the following morning, the 6th. Later that night I ended back atthe ER

because I cannot hydrate and my fever increased. They ended up keeping me there

for ten days. I had to explain aboutthe problems I was having and that I thought

it was a fistula in theupper sphincter and allowing food and liquids into the

lungs. I'd hada bought with walking pneumonia because of the aspirating. I was

justsooooo sure that my problems stemmed from that last surgery. but, Iwas

wrong. The tests that they did, which included an endoscopic scan,said that my

problem was a blockage down before the stomach. TheDoctors involved were

concerned that it was a real blockage caused bylack of blood supply due to the

bariatric bypass surgery that had beenbotched. A surgery was planned to do a

gasterectomy with theassumption that the blood supply problem would not allow

the stomachto function properly. I went home from the hospital with a " PIC " line

and TPN, which was anIV in the arm that was semi-permanent and a glucose feeding

bagsystem. I couldn't have the surgery right away because Dr. Darrochs

wanted to be on the top of his game going into a stomach thathad had so much

change to it. The day of surgery came and I wasworried about losing my stomach.

I was kind of attached to it. I wentinto the pre-op and they were doing all

kinds of things like puttingin a line in my neck and another in my arm to

monitor my heart andblood pressure. I had never had so much for any other

surgery before,but they were preparing to be in there for a long time. I woke

up, I wasn't as groggy as I thought I would be, nor in as muchpain as I thought

I would be. Dr. s and his team came in once Iwas up in my room. They were

beaming. I had only been under for twoand a half hours. Dr. s who is a

Thoracic and Esophageal Surgeonwas just really even more full of himself than

usual. They explainedthat he had gone in and poked around. Asked Dr. G to come

backdown...he was the Endo/Gastro Dr. that had done the scan. Dr. sfurther

explained that he showed Dr. G, the blockage, which actuallywas my lower

esophageal sphincter that was nonactive, and inflexible.He made the

determination that I had achalasia and that all he had todo was a Heller Myotomy

and I would be fine. They were disappointedthat they didn't get to do the

orignial surgery but happy for me.Since the surgery, which is now four weeks, I

have progressed back toreal food. I have only thrown up two times. Food is going

down.Sometimes it isn't as comfortable as I would like, but, I am eatingagain

and getting nutrition. Dr. s had done something that otherdoctors hadn't

been able to do, diagnose my problem. I had achalasia.It may not be the

" disease " that others had, but something that wasmanufactured by the doctor who

had done my bariatric bypass and hadended up cutting my stomach and reparing it.

However I came by it, Iam glad to have an answer to the problem. I have been

told that Iprobably will need another Myotomy in a few years, but it may well

bethat this is all I need.I have the highest regard for Dr. s and his

ability. I asked himif he knew what Dr. I needed to go to after the surgery for

follow upon such a specific and little known disorder and he said. " Me. I amthe

expert in the area on these kinds of disorders and diseases. " Iwas comfortable

with his reply and glad to know that I would not needto go to some place like

the Mayo Clinic for follow up. Its a new lifeand a new world as far as eating is

concerned. I'm looking forward toit eagerly.Sincerely,ita Normann

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