Throat swollen: They said I have severe... - Hughes Syndrome A...

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Throat swollen

Debbweb01 profile image
8 Replies

They said I have severe case of GERD! Plus a couple of spots! Ome side of my throat is much larger than the other and because it's so very swollen there are folds over an area and he can't see what's underneath the swelling! No idea why one side bigger than other! They need to do a CAT SCAN AND BIOPSIES BUT he won't operate on me cuz I'm too hi risk! So I called my Hemo/oncologist and he's going to help me find someone to biopsy me, he says no waiting! It's a new small spot so it's caught early if anything ! They just don't know what's underneath the swollen folds!!! So CAT SCAN HOPEFULLY NT WEEK!!! Wish me luck! My INR was 2.87 much better and risinf

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Debbweb01
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8 Replies
Tammylola2012 profile image
Tammylola2012

So glad you have an answer now and have found the much needed help. Will be praying for you and hope things turn out in your favor. I didn't know GERD could cause that much damage. Definitely lesson learned for me. Did they give you anything to try to calm the GERD until they can find you a surgeon? Best wishes from Kentucky.

-Noelle

Kinsalelady profile image
Kinsalelady

So happy that you have some answers. As I have mentioned, I had severe GERD in the past. Problem with Proton Inhibitors such as Zantac is that they cause a rebound effect which means you produce even more stomach acid. Braggs Apple Cider Vinegar and honey totally relieved my GERD and it is not a drug so you can take it as often as needed. As an RN I am so aware of drug reactions that I do not take them unless there is no other choice. Perhaps try this and see if it releves some of the acid reflux which may be causing the swelling. Sounds like things are better than you thought. So happy for that. Please keep us up to date on CAT scan results. I need to have my HGB checked while I am here in Ireland. Have to figure out where to go. Hopefully when done I will not need a phlebotomy. Fungers crossed. Sending hugs and prayers. xxHarlie

Kinsalelady profile image
Kinsalelady in reply to Kinsalelady

Ooooops. Typo....fingers crossed.

Debbweb01 profile image
Debbweb01

Kinselady why do u need Phlebotomies??? Do u have PV/polycythemia Vera? I also have that too, a sludgy blood disorder! How do I get that brand of apple cider vinegar? Bragg is it? I must get biopsy first! Need to find doc to operate cuz I'm hi risk! So sik of these careful scared docs! My oncologist will figure it out! Lol...hope all well for ur HGB

Kinsalelady profile image
Kinsalelady in reply to Debbweb01

Yes, PV it is. Sick in bed today with the worst sore throat ever. Oh, and the sun is shinning here in Ireland. So no hemoglobin test today. Most super markets carry Braggs. It is just in the vinegar section. It has to be the really cloudy one. If not your super market then a Health store. I never had trouble finding it. Are you scheduled for your Cat scan yet? Keep us up to date. xxHarlie

Debbweb01 profile image
Debbweb01 in reply to Kinsalelady

Omg I can't believe I found someone else with 2 very rare blood disorders that cause thick blood! I was Phlebotomized for ten years! Now I'm in remission I also hat very hi white count, but they said that had nothing to do with PV!!! OMG what do ur docs say! PV is a disorder mostly in men in their 60's! I got mine early 40's! Boy do we have the double whammy! Thick blood disorders! Did u have hard time getting properly coagulated? It's been since October and this May was first time I'm reaching a bit of a goal!!! I wonder if PV affect our APS! I was DX'd in October and I made my sister go and she was shocked to find she has it too!!! Omg I'm glad I made her go!!!

GinaD profile image
GinaD

well, i breathe half a sigh of relief. I'll wait your future update on the cat scan for the other half. my Mom had a severe case of GERD which impacted her life most viciously. for years and years she refused the treatment wherein a doc puts a thing down your throat and tries to widen it. finally she agreed to the procedure and her life improved a lot. A lot. unfortunately, by that time her dementia was well advanced and the quality of food in her nursing home wasn't that great.

Debbweb01 profile image
Debbweb01

My doc said no cuz he don't know what's under the side of throat that's swollen! Last nite I cud not breath cuz it's closing my throat! I had to call my HEMO/Oncologist because this doc refuses to do any biopsy on me! He sez I'm too hi risk and my oncologist doesn't want anything left on my vocal chords & needs to know what under that mountain in my throat! A CAT SCAN will not be conclusive because I am alergic to the contrast and it won't be a good picture! So my oncologist will find someone to biopsy me! It's so difficult to be ME!! lol... Thx NOT SO FAB, YOURE FABULOUS!!! So very smart!!!

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