LPR and nerve pain--for Robinbird

[Buffy]

Hi Robin. I really can't give you any more information regarding how long it will take until the globus will go away, and the story about it taking three years for pain to go away came about when I saw my otolaryngologist. Even though I have throat pain and burning mouth sensation, my throat has slowly but surely gotten better over the past year and a half. When I first saw the throat doc, I was a 13 (with 15 being the worst on the scale); when I saw him one year later, my throat was a 4, which was within normal limits, according to him. When I complained about the pain, he told me the it-can-take-up-to-three-years story. There was a young girl who had LPR, had a fundo, and she had to take Neurontin for three years until the pain finally stopped. My personal feelings about this story is that she probably had LPR for a long time before making the decision to have the surgery. It might have taken her a long time to get diagnosed (I was misdiagnosed for a year, docs thought I just had regular gerd, and it wasn't until my throat was BLEEDING that I decided to take matters into my own hands), or her parents may have wanted to try everything in the book before they had her operated on, and some drugs take several months to be fully effective - or so I am told.

You're in Tampa, right (I have a place in Daytona)? Have you heard of a Dr. Boyce - he's an esophagologist. He refers his patients to Dr. Rosemurgy (sp) for their fundos. The Cleveland Clinic in Ohio thinks very highly of these docs. I did the Mayo thing, they really seem to be noncommittal (I think they smell a lawyer every time a patient walks through the door).

I have been following your progress, Robinbird. What sort of statistics did your surgeon give you regarding the surgical success with globus? Now that you have had the surgery, I think you just need to give it some time. How many weeks post op are you? Your surgeon must have given you a sort of timeframe as far as feeling better. Just hang on a little longer, it's hard for a body to turn around and function differently. Take care, Robin. I'm sending good thoughts and prayers your way. b

[Robinbird]

Actually, my surgeon was Rosemurgy! He's the best...truly, I took the four hour drive to Mayo in Orlando, and agree with you that they are very apprehesive; however, I didn't feel that he was as knowledgeable as Rosemurgy, so I went with "the murg" as I call him.

I've seen 18 docs, so I'm with you on being so misdiagnosed for so long....I've tried the botox shots, allergy meds, and then finally the fundo after having all the test prove that I had severe reflux. I was refluxing bile (alkaline) and acid, 251 times in an 18 hour period while upright, and then 79 times while lying down, so they really felt that the only way to control the reflux was with the surgery.

I also had many videoscopies (sp?) done prior to surgery and afterwards...showing contact ulcers from where the acid was washing over my chords and causing even more pain.

I'm presently getting by on the Klonopin and prayer! However, I'm not going to continue with the benzo, because I don't want to have to depend on anything for too long; besides, I feel like it's to the point to where I need to increase the dosage, and I said I wouldn't do that for fear of addiction.

At any rate, I'm 3 months post op and I desperately want to find some help...at least on the klonopin I'm able to keep from eating something every 30 minutes. I'm never hungry, not ever. In fact, if I went the entire day without eating, I wouldn't miss is...but when I stop the klonopin, I'll have to eat things to keep the pain away, that or sleeping.

MY speech therapist says that it's just the muscles in my throat that have been tensed up for so long (it's been a year come July 7th), that they have to learn how to just relax...all I can do is pray about it; although, I must say that this other doc that you mentioned about the esophagus thingy, sounds like another avenue...I'LL TRY ANYTHING!!!!!!

This pain is truly debilitating, I don't know how I'll ever work again with it. It's so hard to talk while not on the klonopin, which has helped...but once I come off, looks like I'll be working on that gentle and quiet spirit again :)