Re: Do you need Help and info?? ~

[Guest guest]

Happy News Years Eve, . I first want to say welcome, I don't know how long you have been active on the boards but lets see if we can help you and the other new folks that have arrived. To help you out here is some info for you to think about. your last line on this note says you don't want to be a guinea pig. First, you are rarity, an oddity and something of an icon in the newest latest greatest medical anomaly in the world of technology and medicine. Achalasia diagnosis and a solution has not been around all that long and the specialists who know about it are few they clamor to gain experience and add to their portfolio's, especially as laproscopic surgery become more of the "norm" than a rare skill to be garnered. But in the world of Surgeons, every one wants to 'gain experience and knowledge' with these methods that are tried and true. Believe it or not, a

doctor can now purchase a video on how to perform a myotomy, step by step. So to address your questions. yes an EXPERIENCED technician can do your endoscopy and the manometry. Ask them about their experience. A. you SHOULD be sedated for the manometry. B. you should expect to swallow and have a tube ever so gently put down your esophagus and measure your pressure C. The Swallow test is painless, it is performed by a radiologist. . You can expect a video swallow test. Some use the white liquid and the tablet., some may use scrambled eggs. You can bring up any excess that wont go down. But the idea is to see if the Sphincter will open when it needs to,

and close. It contains a radioactive product that shows up on the film. You can have the result put on a DVD/CD to take to the specialist. You have 2 names, interview them. The list of questions to ask and interview the surgeon with is on the group site print and ASK the questions.. If you would like to query your doctor, ask him the SAME interview questions. Shop your surgeon, as the guy with the most experience and success will be your best avenue to a successful surgery. Think of it this way... If you owned a Ferrari, you wouldn't take it Walmart for engine work, would you? In all likelihood, you would go to some one who is experienced with Ferrari's, because if walmart messes up, then you have to find a specialist to fix it correctly! You are the Ferrari! : ) Go to the best.... You deserve it!! and don't compromise. Do the research... find a relative, spouse, friend to help you. Always take someone with you to listen objectively. Keep us up to date.

Carolyn mom of Cameron in N. Californiakare4266 <guerralkml@...> wrote: Hi! Well the New Year is finally here and I can now set my appointments for tests after a long time waiting. My insurance calendar year deductible of $1,500 runs Jan-Dec., so I have been waiting until January to have any procedures done. I went to a GI

doctor in November and he gave me a referral to have an Upper GI done and another for a Barrium Swallow plus a tablet. Not sure what the tablet is for. I left a message with his assistant today to call me back because I want to find out if he has ever dealt with Achalasia before. I have not been officially diagnosed but one GI told me he thinks I have it, but I want to know upfront what kind of experience this new GI has just in case. I do have DES and have been dealing with pain from spasms for months along with dizziness and now some swallowing problems. I do also think there is some nerve problems. Anyway, I live in Orlando, Florida and I do not know any doctors that are experienced with Achalasia, besides calling every GI office and Thoracic Surgeon, I don't know how to find an experienced one. A couple of members did refer me to le at the Mayo Clinic in ville and Rosemurgy at the

Tampa General. Both are 2-3 hours away. Any suggestions on how I can find one in my area? I know you have to drink some stuff for both the Upper GI and the Barrium Swallow but does this stuff make you feel sick or upset your stomach? Even though it is necessary, I hate the thought of something making me feel any worse than I do now. Also, can you please tell me if I should have the two tests done at one of the hospitals here or should I go to an Imaging Center? I have read some posts where some techs doing the tests are not always accurate and alot of times have never even heard of Achalasia. Is there something I should be telling the tech to make sure they do this right or look for the right thing? Also, is it okay for me to go ahead and let this GI doctor send me for the tests or should I find a doctor that has experience with Achalasia and let him send me to have the Barrium and Upper GI tests? I didn't know if it

really mattered, because if this GI doctor does diagnose me with Achalasia then can't I just take the test results to an experienced doctor at that time? I am so sorry for all the questions but I know most of you are very knowledgeable and I just want to do things the right way so I can get the right help that I need. I don't want to be anyones Guinea Pig.Thank you, 4-H Leader extraordinaire! All-Star Advisor to the most awesome kids of Amador County!

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[Guest guest]

Carolyn wrote:

A. you SHOULD be sedated for the

manometry.

Are you thinking endoscopy? Last I knew most doctors insist on no

sedation for manometry. It is a trade off, comfort or accuracy, because

most sedatives will effect the muscles being tested. There are people

that have achalasia that do not have problems, or have less problems,

after drinking alcohol smoking pot, or taking some strong pain meds. I

think it could also be possible to miss a diagnosis of achalasia if the

muscles are to relaxed from drugs. Likewise, we know that many people

with achalasia have more trouble when stressed. Perhaps if they are too

sedated the problems won't be active enough to be diagnosed, even if

the effect of the drug is not suppose to directly effect the muscles.

notan

[Guest guest]

They did give some kind of a relaxer like valium or something

for his last manometry test and it helped him get through it but took

alot longer cause he was to giggly and would not stop talking.Test

finally got done.If you can do it with out maybe do it that way for

accuracy.I did ask if any of that would effect the results and they

said no.

Tonia

[Guest guest]

Tonia wrote:

> They did give some kind of a relaxer like valium ...

I remember hearing hear that a few people have had some kind of

sedation. I don't remember if they were all children or not. One of the

things about sedation is that it has not been well studied for use with

manometry with achalasia. At least as far as I know. So, while some

drugs may be okey, without enough studies to back the practice, there

can be doubt about the results. (Probably only a problem of false

negatives but a positive diagnosis of achalasia is probably not

effected). If it was done at TCC they may have enough experience to know

how to get good results with sedation because of the many times they

have needed to do it. For adults there is the added problem of needing a

driver to get home, but I doubt that is reason enough. They could just

require you bring a driver so I think that the doubt about accuracy is

the reason it is not normally done and that it is believed to not be

needed in most cases, even if desired by the patient

As far as I know, the standards for diagnosing achalasia are based on

studies of subjects that were not under sedation. If based on studies

there was a standard for diagnosing patients under a standard sedation

then this subject would not be an issue and patients and doctors could

have a better choice. As it is now, you can have the standard way

without sedation or have it done a nonstandard way which may or may not

be as good.

See:

A comparison of the effect of three sedatives on esophageal sphincters

in cats.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve & db=PubMed & list_uids=105457\

17 & dopt=AbstractPlus

Or

http://tinyurl.com/2ggvdf

" At our institution, an intramuscular cocktail of meperidine,

promethazine and chlorpromazine (MPC) has been used as the standard

sedative for young children undergoing EMS " ... " its effect on

esophageal motility is not known ... "

notan