Miserable, sad, scared...

Tuesday, I had an Esophogram and the results were not good.  Vigorous Achalasia was the Dx.  I'm supposed to have a manometry to determine the best way to treat it/confirm the diagnosis, but the first available appt is 4/23.  I emailed my PA to see if they can fax an order to the other two hospitals I use, so I can get this done sooner..  My stomach hurts, I'm having a really hard time eating and drinking anything.  

This really sucks.  The occurrence of achalasia is 1:150,000 in non-banded people.  I was told Tuesday, by the radiologist, they're seeing it in 1:100 banded patients.  It's an autoimmune disorder affecting the nerves at the gastro-esophogeal junction, where the LES fails to open in response to swallowing.  In my case, the extra heavy barium just sloshed around in my esophagus as the muscles spasmed violently trying to push the liquid through.  Every time I eat or drink, this is happening.  It's also causing cardiac irritation, since this is happening against my heart, hence the palpitations I feel when I eat,

The other bad news is I probably cannot revise to sleeve, since it is a high pressure system, like the band.  RNY is the surgery of choice with this disorder, and I'm not a candidate.  

Depending on the root cause, I'm planning on going commando, no band, seeking counseling to deal with unresolved issues and keeping on my banded food plan.  That's difficult, since I may end up on a permanent soft/liquid diet.  This doesn't bode well.

That's all for now.

I'm so sorry, Steph. I can relate... I've been in the sad, miserable, and scared banded state that you are in now.  I am SO very sorry you're experiencing this. I wish I could say something to make you feel better.

It's been a long time since you have been having these issues.  Get your band removed period.  I am not surprised at your diagnosis.  The best treatment is removal.  You keep treating the damage the band is doing when the resolve is removal.  The Achalasia is no autoimmune disease.  You and many other Banded people can not tolerate the pressure the Band is putting on your esophagus.  I had all of that and I am absolutely 100% better without the Band.  NO Reflux, No swallowing issues, No general feeling of "illness".

How long are you going to do this Ms. Stephanie?  Get rid of the headache - the Band!

I can't even believe your doctor has not suggested removal

All best,

Layla

Thanks, Layla, my surgeon is leaning towards removal, just waiting on the manometry.  The thing that's confusing to me is that the motility problems I'm having are generalized throughout my GI tract and have developed in the last 6 months...I think both sides are  wanting to make sure more surgery won't = more damage.

Right now, I'm scheduled for the manometry 4/23, my PA is working with my GI and PCP to get me scheduled earlier at the other two hospitals I use.

More surgery (Removal) = more damage???  You have no idea what a relief it is to be "unbanded"  I was unbanded For 6 months.  I was actually sick and was so used to it that I did not realize.  My face was scaling, I had candida, and I just went in with an overall feeling of "Illness".  My doc said all of this will go away. I was miserable about losing my band, but he was right.  My immune system was compromised for sure.

I am in no way suggesting you revise.  That is a personal decision and I would NEVER Suggest to anyone.  I would however encourage you to remove.  You've had so many clues.  Thank God you have insurance.  I had a gazillion tests with my band as well.  I'm still traumatized.

Good luck with everything

I'm Soooo Sorry about all the problems that your having Steph

I too wish a quick resolution to your problems.... Happy that your trying to get that test ASAP and that Band of torture will be GONE!!!! I'll be praying for you.

LAYLA I found your post enlightening, I too have suffered from Facial scaling, Candida, Dyshydrosis (from the candida), Vitamin D deficiency, metallic taste/numb tongue (due to more deficiencies, Left shoulder pain, heartburn, Some nay-sayers will just conclude that the LB didn't cause these problems. I personally know that IT DID and can cause these and other  problems Especially if your Surgeon let's you continue with heartburn and you can't eat for an entire month because the AZZ is out of the office and the problems aren't rectified.  Thankfully, the above issues are starting to reslove for me But I know I'll have to have my band removed but I'm HAPPY to be rid of it ASAP. Again thanks for sharing

Oh man, I am so sorry to hear this.  Truly.  Prayers for a quick manomety, and a healthier future!

So sorry to hear of your troubles.

Here's hoping you can get that thing out pronto.

Best,

Lindsey

Wow - those stats are eye-opening.....but, I am not surprised. I am so sorry that you are dealing with this. I hope that you are able to get your band removed soon (all of my issues went away rather quickly once my band was gone)....and, I hope that you find a good counselor to help you with the rest of your weight loss journey. You are in my thoughts and prayers.

Thank you everyone, will update when I know more.