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andrewtait
@andrewtait

Posts: 2
Joined: Feb 20, 2018

LPR and Laryngeal spasm

Posted by @andrewtait, Tue, Feb 20 4:04pm

I was recently diagnosed in January with LPR/ Spasms. I have gone to an ENT and another local hospital in Jacksonville, but feel I am getting the runaround. Make an appointment then wait a few days to a week to be seen. Then after your seen lets do a test, which takes another few days to a week to get in. Then the test has to be read by the ENT which takes several days for a response back. In this time I am steadily getting worse and my symptoms are only improving very little. On top of that I have not been able to eat solid food since 12-24 and I am currently down 30lbs. I called Mayo to try and set something up since people were saying this was the best treatment around, but It seems upon initial contact it is the same runaround. No ENT doctors and only surgeons who will look at prior medical records and decide if you need surgery (how do you do that without checking the patient and making your own diagnosis on someone else's records). Then I inquired about a "Swallow Study" this other hospital is wanting to do, which I'm sure will take a weeks time to get an appointment an answer. I inquiry with Mayo scheduler who is giving me the information that they will have to review other records to determine if I'll be seen and says they will determine if I need a swallow study (unreal). I was told this was the preeminent medical facility in Jacksonville, but it seems like the normal operating procedure among hospitals. I do not care if I have to start the process completely over to find out what is going on I just want answers as to these symptoms and lack of being able to eat. I have been out of wok for close to 1 1/2 and need some semblance of a normal life again. Any suggestions or do I stay with the current course of treatment that diagnosis but does not really give a reason or fix for the issue or is MAYO able to help.

REPLY

I hear you! I have swallowing problems. They got much worse with new symptoms after I had a pacemaker put in in Oct. they had to replace a lead in Jan. I saw a gastroenterologist but because I had a scope done in Jan, 2017 that showed no problem, they said I do not need another one. I too have lost a lot of weight which I could not afford to do. I am having a CT scan done tomorrow but it seems every time I have a test or see a doctor, I get worse. They don’t seem to realize between all the tests and appointments we are suffering and getting worse.

Thanks for the response. I to agree with your statements. However I'm only 43 with no prior health issues and this all started XMAS day with my throat nearly swelling shut as I could not breath and of course once at the ER they were sure it was a Heart Attack and nothing to do with my throat. Frustration to say the least is in overdrive. Hopefully they come up with something as I do need to get back to normal.

@andrewtait

Thanks for the response. I to agree with your statements. However I'm only 43 with no prior health issues and this all started XMAS day with my throat nearly swelling shut as I could not breath and of course once at the ER they were sure it was a Heart Attack and nothing to do with my throat. Frustration to say the least is in overdrive. Hopefully they come up with something as I do need to get back to normal.

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Have they done allergy testing? Have you been tested for eoe disease?

Hello @andrewtait, welcome to Mayo Clinic Connect! I'm sorry to hear about your issues and feeling as if you're getting the runaround- how frustrating.

I see you have met a couple connections here but would also like to introduce you to members @fourof5zs and @gpants who have posted about LPR.

We have a few discussions on Connect which you may wish to view:
– Laryngopharyngeal Reflux (LRP) – severity and outlook? https://connect.mayoclinic.org/discussion/laryngopharyngeal-reflux-lrp-severity-and-outlook/
–Does surgery work for LPR https://connect.mayoclinic.org/discussion/does-surgery-work-for-lpr/

Also, I hope to see you pursue a visit with a specialist at Mayo. Look up laryngologist specialists. At the Rochester MN, Mayo, the ENT physicians will evaluate the patient and then decide on a plan. Outside medical records are reviewed and taken into consideration but a lot of times the physician will request testing to be done at Mayo. The ENT physicians in Rochester work directly with a voice specialists and a speech language pathologists in clinic so you will see the team together for evaluation. I hope this helps.

Get a barium swallow study with an ENT somewhere, it can show if you have esophageal diverticula (which I have) and/or hiatal hernia which may be part of the problem. Also dilation of the esophagus might help (gastro doc). keep on searching… jb

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