questions for the experts

[Guest guest]

lets see, dont tell anyone but i dont wear googles or glasses when i mix my

lye (please dont let the soap police come get me) and i usually make my soap

when the babies (one is 8 months the other 6 years) is sleeping, so i am not

sure what the distance is sposed to be

i also make it when they are watching tv in the living room, exactly sure

what the distance is, but i can see them from the kitchen

[Guest guest]

You are all so well informed compared to me. I hope I don't drive

you all nuts with so many questions. I'm going to see the surgeon

next week and I want to be better informed. I'm hoping for the lap

surgery. My gastro doctor told me they don't know if they can do the

lap until they " get in there " . I'm too scared of the other surgery.

I just can't imagine going to the hospital prepared for the lap and

then waking up,finding it couldn't be done and being in enormous pain

and facing a long recouperation period! Please tell me this isn't

so. What questions should I ask the surgeon? It seems like most of

you were able to have the lap.

What is flax oil? What is Arginine? Why is drinking Coke helpful

when eating or sick? What is LES? Can I take flax oil and/or

Arginine? Would it help me swallow better, not get as sick after

eating or what? Does the doctor prescribe these things or are they

health food items?

I've taken Paxil for five years. That's when my chest pains

started. My gastro doctor didn't think that was the cause of my

Achalasia. I guess we all wonder how we got this very rare disease.

There is nobody in my family with it.

I'm sitting here at work and just finished my chicken noodle soup,

threw up " slime " about six times in my wastebasket and my blouse is

finally dry from the " juices! " I'm depressed over this whole thing.

You all seem to have very good attitudes. I hope I learn from you!

judy

[Guest guest]

Judy:

I am just wanting to write you a quick note to offer my sympathy. It

is so frustrating to try to learn about something so few people

have. I will leave the answers to your questions to some other

members who are so much better informed than I am. I have found this

site to be the best source of information I have found on achalasia.

I was quite down after the holidays in part I think due to feeling

like such an oddball sitting at the table eating a bit of mashed

potatoes and squash while everyone else was eating a great meal. I

skipped New Year's Day altogether. Had enough by then. I would just

say that while no doubt a lap surgery is the preferred option if the

other way will get the job done it is worth a few weeks of discomfort

so please don't let that sway your decision.

Liz

> You are all so well informed compared to me. I hope I don't drive

> you all nuts with so many questions. I'm going to see the surgeon

> next week and I want to be better informed. I'm hoping for the lap

> surgery. My gastro doctor told me they don't know if they can do

the

> lap until they " get in there " . I'm too scared of the other

surgery.

> I just can't imagine going to the hospital prepared for the lap and

> then waking up,finding it couldn't be done and being in enormous

pain

> and facing a long recouperation period! Please tell me this isn't

> so. What questions should I ask the surgeon? It seems like most

of

> you were able to have the lap.

>

> What is flax oil? What is Arginine? Why is drinking Coke helpful

> when eating or sick? What is LES? Can I take flax oil and/or

> Arginine? Would it help me swallow better, not get as sick after

> eating or what? Does the doctor prescribe these things or are they

> health food items?

>

> I've taken Paxil for five years. That's when my chest pains

> started. My gastro doctor didn't think that was the cause of my

> Achalasia. I guess we all wonder how we got this very rare

disease.

> There is nobody in my family with it.

>

> I'm sitting here at work and just finished my chicken noodle soup,

> threw up " slime " about six times in my wastebasket and my blouse is

> finally dry from the " juices! " I'm depressed over this whole thing.

> You all seem to have very good attitudes. I hope I learn from you!

> judy

[Guest guest]

Judy,

I was diagnosed at 17 after about 3 years of all kinds of stupid stuff. At

the time of diagnosis I weighed 89 lbs. I have no alternative but the

Thoracic surgery. Lap surgery was not even on the radar scope in 1976. I

then had a fundoplication (a wrap) in 1990. I had to have the wrap taken

down in 2000. Would I do it again...well I would not do the wrap again.

That would have prevented the other 2. Now days, they do it all via lap and

they have perfected the wrap. Things are alot safer and easier. The

surgery is well worth it when you consider the consequences of slowly

starving to death!

BTW, my fellow Achalasians, my docs in Kansas City tell me that in the

future (5-8 yrs) they will be able to do the surgery via Endoscope. No

incision at all. They are presently working with an engineer to perfect the

instruments needed. You guys have it sooooooo much easier!

J.C.

Re: questions for the experts

> Judy,

> I think you need to join the new " what doesn't kill me makes me

> stronger " club! It's all a state of mind...if you let it get you down,

> you win. THink of it as a battle royal, but in a way you love the

> enemy, because at least at the present time, it is in your body!! That

> attitude got me over many a low day. I mean, what are you going to do?

> You're still YOU. Your friends don't love you any more or less because

> of your " A " , you are your own best friend, etc, etc. I have had days

> where I didn't think I could stand doing the slime lunch one more time,

> etc, and it was inconvenient and it was disgusting but I was better than

> IT was. LOL. All good advice, but at times, I had to work at believing

> it. I eventually did believe it. Also, my spirituality helped a lot.

> Arginine is an amino acid/supplement that you can buy at the health

> food store. My doctors know I am taking it. I had a very successful

> lap surgery Dec. 4th, but as I was healing, I had some foamy burping

> periods (spasms) and some BAD spasms until things calmed down. FOr some

> peope, levsin is the ticket. For some, coke is the ticket, albeit

> usually warm and flat coke or cola syrup, I think. For some of us who

> were willing to be guinea pigs and follow Joop's posts of success with

> arginine, arginine is the ticket. I don't expect your doctor to be

> really informed about arginine. You should go into the archive search

> box and type the words arginine and/or Joop to read his research and

> statements about arginine. I am hoping that Baylor, my doctor's

> medical school/hospital/clinic settings will get interested if I keep

> plying them with posts of success, etc. So far, I think there are about

> 4 of us using it...Joop, JC, myself, and someone else...Jenn? I think

> there is another guy trying it too. According to Joop and most of the

> research I have read, it won't hurt you, at least not in the amounts we

> are taking it in....500 mg. 2 or 3 times a day. I have tapered off to

> only using it when I need it, as it seems to work that way for me and my

> symptoms have abated so much since my surgery that I really don't need

> it very often. . For me, I would be afraid of the bigger surgery,

> but knowing what life is like on the other side of a tight sphincter, I

> would go for that too, if necessary. I know the recovery would be

> longer, but KEEP YOUR EYE ON THE PRIZE!!! Of course, you have

> particulars that none of us know about and ultimately you and your

> surgeon would weigh your risks. I would ask my doctor the following

> questions:

>

> How many lap/myotemy/fundoplications has he done? What are the

> statistics on success/needed more surgery/didn't work? Are there any of

> his patients you could talk to who have had the surgery? (I volunteered

> to do that if someone wanted to talk to another achalasian on the other

> side of myotemy.) Is he as prepared to do the big surgery as he is the

> lap surgery if things progress to where you needed that? How many

> thoracic surgeries of this type has he done? What does he see as your

> own particular physical strengths/weaknesses for a successful outcome?

> What would HE do in your shoes? And last, are there any other

> questions that he thinks you should have asked? Any other information

> pertinent to your case that he thinks you should know. Tell him up

> front that you want to be fully informed about what he is going to do

> and what happened during your surgery. How long does he think recovery

> time would be for thoracic surgery?

>

> I wish you luck. I too, even though I had never had surgery before in

> this part of my body worried that it might progress to thoracic. You

> never know, but usually, it doesn't, I think, if the surgeon knows what

> he is doing. Are you with a really top notch surgeon? I can't remember

> what you said about him/her. Keep us informed. You can never ask too

> much or tell too much in here.

>

>

>

>

>

>

>

>

[Guest guest]

Thank you so much for getting back to me. I really appreciate your

feedback. Fortunately, since I had the wrap ( don't know exactly what it is

called, but they just used my own stomach fat to wrap around perforation in

2003) I have been able to eat relatively well as long as I eat moist items

slowly and drink lots of water. I am seeing an entirely new group of

doctors at UVA medical now and this has been their first suggestion. They

did tell me normally they would only do botox on elderly people and that

there was a slight risk that a myotomy later may be more difficult. They

said that if botox didn't help just for the spasms than a myotomy probably

wouldn't. It took me 6 months to get my insurance to let me go to UVA

medical and basically told me it could take a year or more to get approval

for Cleveland Clinic, and this was just for them to pay their contracted

rates and I pay the difference. We all know how frustrating dealing with A

can be. I know I don't need to continue on about that. I have been trying

to stay away from pain management, because I don't want to have to be on

meds constantly. I have a feeling I will be needing to go that route soon.

Also, today is 6 days and my eating is not even a hair better and I haven't

had a horrible one but they're alot more often and my throat feels

tight/closed. I would greatly appreciate any suggestions or more insight.

[Guest guest]

I'm sorry you are struggling, it can be very frustrating. What you explained

makes more sense, that they tried the botox to help temporarily or just to try,

so they knew it wasn't maybe the best option, balancing the costs with what your

HMO provides.

You might try some yoga and other relaxation exercises to calm yourself and

maybe live a more relaxed life. Get a tape or record a video? It at least

won't make you feel powerless.

You might try Advil and the other OTC pain killers on a regular basis, just so a

new spasm doesn't hit you out of the blue.

Have you had spasms all the time so do you do the tricks we all developed?

Eating bread until it stuffs your esophagus, then drinking water, even if you

have to regurg the whole mess back up? It seems like for some of us, it stops

the esophagus from contracting.

Some have had some really good luck w/ popsicles after surgery.

For many, after a myotomy the spasms do increase, and can be really awful, but

the taper off and lessen, just like an earthquake pattern. Maybe it is the same

for botox?

It has only be mentioned a tiny bit here, but has had one had any relief from

medical marijuana? Even though I'm in CA, I don't use it, don't need it, but

have to say, if I was still getting migraine headaches, I might try it. Any

comments? Any success? , did your husband ever try it? Just curious, if

anyone has any input.

, there are others here that might have some help with getting

referrals outside the network, if the time comes. A calm, firm, determined,

mommy voice with the tone just right that they might have to go to a time out,

works wonders with clerical decision makers. A year, if the need arises, just

seems too long. There are enough stories here of what can happen if you wait

too long, and seems like if you put that very subtle threat in your requests,

you might get more speed... something like " any delays are causing me severe

pain and suffering and are contributing to the long term cost and care for my

growing disability needlessly, due to your negligence. Or any other legal words

that have $$ in them. It is possible your state insurance commissioner can

help.

In the meantime, meet one or a few of us! it is helpful beyond belief. Just to

see someone else and talk with them in person is priceless.

Also, maybe I was too harsh on your current doctors, likely the early

perforation years ago contributed to your current problem.

Call any one of us and arrange a meeting or at least a long phone call. There is

a facebook group, I'm personally kind of " over " facebook, but it is so nice to

see some who I know have suffered greatly leading a normal life, birthday

parties and family functions. and come to mind. I haven't ever

talked to them, but it is very calming to see a post every once in a while from

them, just living a normal life.

Sandy

>

> Thank you so much for getting back to me. I really appreciate your

> feedback. Fortunately, since I had the wrap ( don't know exactly what it is

> called, but they just used my own stomach fat to wrap around perforation in

> 2003) I have been able to eat relatively well as long as I eat moist items

> slowly and drink lots of water. I am seeing an entirely new group of

> doctors at UVA medical now and this has been their first suggestion. They

> did tell me normally they would only do botox on elderly people and that

> there was a slight risk that a myotomy later may be more difficult. They

> said that if botox didn't help just for the spasms than a myotomy probably

> wouldn't. It took me 6 months to get my insurance to let me go to UVA

> medical and basically told me it could take a year or more to get approval

> for Cleveland Clinic, and this was just for them to pay their contracted

> rates and I pay the difference. We all know how frustrating dealing with A

> can be. I know I don't need to continue on about that. I have been trying

> to stay away from pain management, because I don't want to have to be on

> meds constantly. I have a feeling I will be needing to go that route soon.

> Also, today is 6 days and my eating is not even a hair better and I haven't

> had a horrible one but they're alot more often and my throat feels

> tight/closed. I would greatly appreciate any suggestions or more insight.

>

>

>

>

>