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Gareth's Endoscopy today

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#1 Margaret


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Posted 27 January 2009 - 07:41 AM

Hi Everyone,

Gareth finally had that endoscopy that he was suppose to have done the beginning of December. His duodenum and stomach appear normal, he still shows abnormal motility in the middle third esophagus, and his Z-line was irregular. But.....the cause of his upper esophageal problems seems to be the occurrence of large nodules around his epiglottis and throat.....something that wasn't there 18 months ago on the last endoscopy. I tried to find if nodules were sclero related and it seems they are.....skin wise. I could find nothing about nodules being internally. Anyone out there have any info on that? He said the large nodules would definitely affect his food going down and pills getting 'hung up'. Now we have to find an ENT to go to. The Gastro doctor commented "I never saw anything like that before but that isn't my territory!!!"

Take care, Everyone.

#2 Shelley Ensz

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Posted 27 January 2009 - 03:49 PM

Hi Margaret,

I'm glad Gareth finally had his endoscopy. As it happens, the nodules might be related to scleroderma (or other rheumatic diseases). You might like this reference, which is on our Esophageal Involvement page:

(PDF) Laryngeal assessment in rheumatic disease patients. Laryngeal abnormalities were seen in 11 of 12 patients with lupus, in all 11 patients with scleroderma and in 3 patients with mixed connective tissue disease. Vocal fold bamboo node was observed in 5 patients and 92.3% of all patients presented laryngeal signs of gastroesophageal reflux disease. Rev Bras Otorrinolaringol. V.71, n.4, 499-503, jul./aug. 2005.

Did they say they can remove the nodules? Let us know how it goes. And extra warm hugs, just for Gareth!
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.

#3 canon


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Posted 27 January 2009 - 05:09 PM

Hi Margaret,

The puzzle never seems to fit does it? It is a good you and Gareth have found some answers. He is young so the medical people cannot blame old age for the nodules. Hope everything works out. I have nodules in my lungs, liver and stomach. I was told they are not sclero related and I am not convinced they are correct in saying that from what I have read. They are watching mine and doing CT scans every few months. The first follow up showed no real change or improvement. I will see the gastroenterologist in February and will discuss the liver because that nodule is good size. Am cutting back each month on the methotrexate since I have been on it for 8 years now. Methotrexate can cause some problems with long term use. Will read Shelley's link, thank you Shelley.

Not much help with any answers because no one seems to ever have one for me so I can help others. Hang in and sooner or later someone will come up with information.

With gentle thoughts,

A happy heart is good medicine.

#4 LisaBulman


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Posted 28 January 2009 - 04:17 AM

HI Margaret,
I'm glad Gareth finally got his endoscopy. Boy it never seems to end! Hopefully you'll find an ENT that is experienced and will be able to handle this situation with ease.

Please keep us posted.

Lisa Bulman
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#5 Margaret


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Posted 28 January 2009 - 04:20 AM

Hi Shelley ,

Well, I Googled vocal fold bamboo nodes and lots of hits came up but G's nodules are all around his epiglottis/throat area. The doctor couldn't even see his vocal cords. I have a strong suspicion that they are related to his UCTD/sclero from what I have read in the Medical section, but didn't know if nodules could be internal.

Judy.....thanks for the letting me know that you have them internally. Now I know my hunch MAY be right. His rheumatologist is finding a 'good' ENT for me at the Medical Center.....she probably thinks the same, too.

Take care, Everyone.

#6 debonair susie

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Posted 28 January 2009 - 11:21 AM

Really appreciate your keeping us posted about Gareth, Margaret.

Hopefully, you are able to find an ENT who will be able to enlighten you without further delay.

I'm just glad the gastro was honest with you, yet it seems a bit odd...unless he is not at all familiar
with health issues such as Gareth's.

At any rate...we will be anxious to read of any more news you may have for us.
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)