Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Monometry test and 24 hour PH test...


  • Please log in to reply
8 replies to this topic

#1 WestCoast1

WestCoast1

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 09 November 2009 - 06:44 PM

Hi all~

I am so on the fence with this one!  I have this test coming up very quickly and can't decide if I want to go through with it.  I have read the treatment for what they are testing for, and I just dont want to do it, it sounds horrible....so why get tested for it!


On the other hand, is it really necessary?  Has anyone had it done and what comes next?  I am not sure how my children will feel about mommy running around with a tube hanging out of her nose and trying to eat "normally" to get these results that they are looking for.  I am just really confused.

Any ideas?
*WestCoast*

********

#2 Cheryle

Cheryle

    Senior Bronze Member

  • Members
  • PipPipPip
  • 94 posts
  • Location:Atlanta Area

Posted 10 November 2009 - 01:55 AM

Westcoast,
I had had the Barium swallow that didn't show anything wrong.(I guess my esophagus was working during the test) My GI doctor ordered the Manometry and 24 hr PH to give him a clearer picture and boy did it!! As soon as he got the results, he put me on 2 Nexium a day.

I didn't find either one to be all that bad, in fact far from horrible. I didn't mind the small tube from my nose, they taped it to the side of my face, so it wasn't dangling or anything. The main thing is to relax when they insert and remove the tubes. You can ask to have the most experienced nurse to do it.

Cheryle

#3 mando621

mando621

    Silver Member

  • Members
  • PipPipPipPip
  • 212 posts
  • Location:Wisconsin

Posted 10 November 2009 - 02:39 AM

Hi,

Been there, done that... I'm glad I went through the tests because it was the main symptom that could be documented that finally got the rheumatologist to look at things closer. Yes, it isn't the most fun thing to do in the world!! But if you try to use the techniques from natural child birth, take yourself somewhere else mentally, controlled breathing, it is manageable, just barely. I gagged quite a bit during the manometry when they tested the upper esophagus, but at least it showed what was going on in the lower esophagus. As to the 24 hour Ph test, I had the type of test that not only tested acid but any type of reflux. The Brava capsule is one test that they can do without a tube, the thing is attached to your esophagus and you wear a receiver box that records the measurements. This didn't show much for me because it ends up that I actually have non-acid reflux most often. The test they did was a Ph Impedance test which found that I have pretty normal reflux, but it is getting quite high up in the esophagus. The specialist I saw for the Ph Impedance test said that the best way to test is with the tube hanging out. I had a very hard time doing what I would normally do since the tube would move around in my throat and cause me to gag. I really tried to do what I normally would do because I wanted the test to show as much as it could since I was going through the hassle of taking it.

It does look a little funny, I'm glad I didn't have to go anywhere out of the house, but my family took it all in stride. They knew that I wanted answers and this was the way I was going to get some.

I had to pull out the tube on my own since I had the test on a Friday. That wasn't too bad, since it was such a relief to have the test done. The tube made my throat a little sore, but once it was out I was fine. It definitely wasn't bad compared to other medical procedures I've had. Nothing compared to an angiogram on the brain! That was a tough one.

Try not to dwell on the test, it will be over quickly (the manometry) and it might give you the answers you are looking for. Esophageal involvement is what got me wondering what was wrong with me years ago. I'd been telling my primary care doctor that I was having trouble swallowing and she had sent me to a neurologist and then pretty much didn't know what else to do about it. She didn't seem to be taking me seriously and really didn't know what else to do about it. When I finally saw a GI specialist by self referral through my HMO, the nurse called me after the manometry and told me "no wonder you are having troubles swallowing, your esophagus isn't working much of the time". My primary care doctor seemed to be angry at me when I went in to discuss the results of the tests, so I ended up changing primary care doctors as a result of all of this.

Best of luck in your test. I would go through it again if I had to because it finally showed that all of my issues aren't something just in my imagination.

Mando.

#4 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 10 November 2009 - 03:39 AM

Hi West Coast,

What do you think they are testing for and what treatment did you read about that sounds so horrible? Sounds like someone may have given you some misinformation.

As far as I know (from my own experience), what they are testing for with the 24-hr pH impedance test is amount of reflux and how acidic (or non-acidic) it is, how often during the 24 hours you have episodes of reflux, and with some sensors, how far up the esophagus it comes.

The manometry shows how well the upper and lower esophageal sphincters are working as well as how well the muscles of the esophagus are working (that's the motility part) along its length.

They aren't something you'd do for fun, but they provide an enormous amount of information that's difficult to get any other way and the information is accurate and precise.

The most usual treatments are something to alter the level of acidity in the reflux (like the purple pill or other proton pump inhibitor, antacid, etc.)and something to stimulate or strengthen the wave action of the esophageal muscles. Neither of those are too bad, are they?

The alternatives to not receiving treatment are worse. Constant acidic reflux can cause erosions in the esophagus and strictures (tight spots in the esophagus due to scar tissue from the erosions)and in some very unlucky people it may progress to Barrett's Esophagus and/or cancer. Lack of motility can be extremely uncomfortable (I've "got the T-shirt" on that one). And there is speculation that GERD (gastro-esophageal reflux disease) can contribute to pulmonary fibrosis because there is the frequent opportunity for aspiration (to inhale) of the refluxed acids and food particles.

So about the kids. If you make a joke out of it, they'll handle it better than you think. Kids are resilient and since most everything seems strange to the little ones, the tube won't seem much worse than everything else. Mine would have loved to think it was a big worm or something equally as gross and I'd have to watch the 2 middle ones like a hawk to make sure they weren't trying to stick something up their noses! Or consider a sleep-over for them so they don't get to see it at all.

Go through with it, Sweetie. Be brave. We'll all be thinking about you.

Warm hugs and a box of tissues (oh yeah, your nose WILL run during the impedance test. Forgot to mention that. Posted Image )
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#5 jillatk

jillatk

    Senior Bronze Member

  • Members
  • PipPipPip
  • 78 posts
  • Location:Colorado

Posted 10 November 2009 - 05:38 AM

WestCoast1

I just had the manometry test done last week. I already have been on all the GERD meds and they did not work, so I am heading for a Nissen Fundoplication to resolve the GERD. You really do not want your esophagus to continue being burned by the stomach acids. It can also cause dental problems if the acid is getting into you mouth - it will strip the enamel right off your teeth. The manometry test is tolerable. They have you inhale a lidocaine gel to help numb the nostril. I gagged when the tube got to the top of my esophagus, but it was short lived and the nurse was quite gentle about waiting for it to pass. It gave the doctor valuable information about the strength of my swallow and helped with the decision about whether I was a good candidate for surgery. The thing about this disease is that it is test intensive. But, they are all important in staying ahead of the things we know are a risk for people with SSc.

You have gotten some good advice - stay relaxed and breathe through the uncomfortable parts. Nothing about the two tests you are going to have is too horrible or undoable.

Good luck and let us know what you find out.

Jill

#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 10 November 2009 - 05:51 AM

Hi West Coast,

I know what you mean; this is a test that sounds a lot worse on paper than it really is. I haven't needed it as my reflux is under okay control.

But my husband did. He had the tube put in and then went to his part-time job as a restaurant greeter. I really don't think anyone even noticed, but probably because he is already on oxygen so there were already tubes in his nose all the time.

Anyway, he had no problems at all with choking or irritation or eating or people making fun of him. They probably wouldn't have a chance though as he'd be the first to crack a joke about it!

In that particular case, he had the test to prove that he didn't have reflux anymore, after having his Nissen fundoplication surgery. He was just bothered by the fact that he already knew it had entirely cured his reflux -- because he ate a bratwurst with onions, right before bed, and had no heartburn at all.

Now, if there was some money to be made with the Bratwurst Reflux Test, we'd all be rich. But that documentation isn't good enough for doctors, of course. To figure out if treatments are working, sometimes they need to do more elaborate things. Like this.

But if you're satisfied that your reflux is under good control, then I don't quite see how they'd have much reason to encourage the test. I've happily declined many medical tests, myself, or negotiated less invasive tests, or even the frequency of testing. I've changed doctors when they were inclined to do lots more testing than I was happy with. There's a pleasant middle of the road where we get reasonable care without getting burdened by excessive care, which I believe is more of an issue for people with chronic illnesses than many clinicians realize.

So if you see a need for the test, in how it would affect your diagnosis or treatment, then go ahead with it. If not, discuss that with your doctor. Also, be wary of doctors who are doing testing just for their benefit. If I say my GERD is under okay control, then I expect my doctors to believe it and not demand testing to prove it. I have enough on my plate as it is, so to speak. But Gene couldn't escape the surgeon's need to know, for a fact, whether the surgery was a complete success, or not, so he didn't even bother trying to fight it.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 WestCoast1

WestCoast1

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 10 November 2009 - 06:42 PM

Wow, that so much good advice. I understand that this test is needed for so many, but I am not sure if I really need it. I already know I have severe GERD. I guess the doctors are just frustrated that the meds only work so much. I know that surgery is my next step and I really am not ready to do that. So do you still think that the test is necessary?

Considering that there will still be some cost on my part and discomfort...all I will get are results to confirm what we know, I have severe GERD...right? I have had every test in the book, I am not sure why this is such a hard decision for me!

:blink:
*WestCoast*

********

#8 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 11 November 2009 - 06:10 AM

Hi WestCoast,

I would also decline the test if it was only intended to prove what I already knew and was already being treated for. I mean, what's the point?

So in this case, the point is probably that the test would indicate whether or not you really needed the surgery. You already have the severe heartburn, it is already unrelieved by medication. You don't want to have the surgery now. So, what's the point?

I'd hazard the idea that you might want to save that test for when you finally are in the mood for surgery. Then they can get before-and-after readings to see how successful the surgery was.

As for the Nissen surgery, if/when you're game for that, the most important element is picking a very experienced and successful Nissen surgeon. Do not go with an inexperienced surgeon, no matter what. They have listings of hospital quality, surgeon's success rates, number of certain procedures done, etc. Invest your time in checking that out, way ahead of time. For some surgeries, just about any good surgeon will do, but for a Nissen, you want it done to perfection, especially with scleroderma.

My husband had a totally successful Nissen fundoplication surgery. He was out of the hospital in just a few days, and never had a whimper of heartburn afterwards. He is still able to burp and vomit, which many people with Nissen's are unable to do, but it indicates the ideal amount of tightening was done, just enough to prevent the reflux but not too much to stop other natural processes. However, he had an outstanding Nissen surgeon at a center that does a lot of them.

Not everyone has ideal outcomes, though. And things usually have to be bothersome enough to us to give us the will to take surgical risks. Just don't let others pressure you into it. It is your own decision to make, in your own good time, after you have assembled all the facts.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 12 November 2009 - 03:06 PM

Erin,

I don't really have anything to add because I have no experience in this department, but it's all so interesting and I can't wait to hear what you decide. I can say however, in my health care management, if I can't see a good reason to do any test, take a certain med etc. I decline. I think I aggravate my doctors sometime, but oh well, they'll get over it. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)