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Saw the LPR specialist today

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GERD & Acid Reflux
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Posted 12/9/2011 12:11 AM (GMT 0)
Hey everyone
so today I had an appt with an LPR specialist. The good thing was that she described my exact swallowing problem in specific detail, before I even said a word. It sounds like I have a cricopharyngeal dysfunction likely due the gerd. Unfortunately, my throat is a mess and it looks like one of my vocal cords is quite affected and is the reason why I get so hoarse when I talk for more than a few minutes. Even my ears are affected!

so...she is going to do the manometry and the ph testing and I have to have this thing where she is going to put needles in my voice box!! she said it is just a little uncomfortable !! let me tell you...she is supposed to be world renowned but is not the most gentle person.

so I don't have any earth shattering tips to share with you...sorry about that...maybe soon... I go back on the 19th for the manometry and insertion of the tube for the ph testing
Posted 12/9/2011 1:43 AM (GMT 0)
I saw Dr. Koufman over this past summer myself.

Yes, she also gave me the LEMG test where they stick the needles on your throat. That test apparently was +ve for me - indicating that I'd had some sort of neuropathy, but it also indicated that the nerves were healing. Yes, this test is quite painful - but gets over soon. It does continue to hurt a bit for a couple of days. Other ENT doctors I've spoken to don't believe we need to have this test. My throat used to hurt real bad back then - so she wanted to see if there was any neurogenic component to it.

If you are tested +ve on this one, she will prescribe some sort of neuro-drugs along with the PPIs (in my case Gabapentin was prescribed). Since I could not tolerate this drug either, she gave up on me - saying that she can not really help me. I've been following her diet (or very close to it) since April of this year. She said that she'll monitor my throat once in 3-4 months if I wanted to be seen by her - but beyond that she can not really help me - and I appreciate her honesty. She did say that I should not rush into surgery just yet - and give it time to see where I land. In her book, she talks about patients who've gotten better on diet alone.

I don't know if you know but she'd had reflux herself and had gotten fundoplication done in the late 90s sometime. She is the one who coined the term LPR and has done a lot of research in this field and has advocated the difference to the medical community back when people treated it pretty much like GERD.
Posted 12/9/2011 2:49 AM (GMT 0)
Hi PPI- less
why is she not able to help you? Did you feel she was authentic and competent? As I let, she told me this was all "fixable"...... are you planning on seeing her again?
Posted 12/9/2011 3:11 AM (GMT 0)
Hi guys,

After all the numerous tests myself and probably you folks been through.....we can come up with several conclusions......

1. We have GERD....according to 48 Bravo or PH Test
2. We also have LPR (a theorized condition by ENTs and GIs which supposedly acid gets up past the upper valve....I forgot what its called)
3. Medicines do not help us....or me for that matter as well as diet....so basically I gave up eating the super clean diet I did for months cause I realized it didn't matter...
4. I can live with the condition which it's not getting better by me going on with my everyday life.....
5. Next option......is fix the structural problem which surgeons, some GIs and ENTs will agree will fix the problem
6. Some has gotten better, some has not....it's a risk we have to take on our own bodies.

I for one know I cannot live with this condition being like this and need to take a risk for the better or worse.

Good luck Belljar1995 toward the better of your health. I wish you the best. Don't let the disease plague your mind. It can get to you. It does to everyone including myself all the time. If Nissen helps me......my life will 10x better than it was when I was 100% healthy cause I will appreciate that much I get better. I plan to go for the surgery before the end of the month. Good luck.
Posted 12/9/2011 3:11 AM (GMT 0)
Hi guys,

After all the numerous tests myself and probably you folks been through.....we can come up with several conclusions......

1. We have GERD....according to 48 Bravo or PH Test
2. We also have LPR (a theorized condition by ENTs and GIs which supposedly acid gets up past the upper valve....I forgot what its called)
3. Medicines do not help us....or me for that matter as well as diet....so basically I gave up eating the super clean diet I did for months cause I realized it didn't matter...
4. I can live with the condition which it's not getting better by me going on with my everyday life.....
5. Next option......is fix the structural problem which surgeons, some GIs and ENTs will agree will fix the problem
6. Some has gotten better, some has not....it's a risk we have to take on our own bodies.

I for one know I cannot live with this condition being like this and need to take a risk for the better or worse.

Good luck Belljar1995 toward the better of your health. I wish you the best. Don't let the disease plague your mind. It can get to you. It does to everyone including myself all the time. If Nissen helps me......my life will 10x better than it was when I was 100% healthy cause I will appreciate that much I get better. I plan to go for the surgery before the end of the month. Good luck.
Posted 12/9/2011 3:11 AM (GMT 0)
Hi guys,

After all the numerous tests myself and probably you folks been through.....we can come up with several conclusions......

1. We have GERD....according to 48 Bravo or PH Test
2. We also have LPR (a theorized condition by ENTs and GIs which supposedly acid gets up past the upper valve....I forgot what its called)
3. Medicines do not help us....or me for that matter as well as diet....so basically I gave up eating the super clean diet I did for months cause I realized it didn't matter...
4. I can live with the condition which it's not getting better by me going on with my everyday life.....
5. Next option......is fix the structural problem which surgeons, some GIs and ENTs will agree will fix the problem
6. Some has gotten better, some has not....it's a risk we have to take on our own bodies.

I for one know I cannot live with this condition being like this and need to take a risk for the better or worse.

Good luck Belljar1995 toward the better of your health. I wish you the best. Don't let the disease plague your mind. It can get to you. It does to everyone including myself all the time. If Nissen helps me......my life will 10x better than it was when I was 100% healthy cause I will appreciate that much I get better. I plan to go for the surgery before the end of the month. Good luck.
Posted 12/9/2011 3:32 AM (GMT 0)
Hi Belljar,

I am extremely intolerant of medications .. here are the various things I've tried:
- PPIs (prilosec, nexium, prevacid, protonix, aciphex)
- H2s (zantac, tagament, pepcid)
- Gabapentin
- Zoloft/Prozac/Wellbutrin
- Ativan/Klonopin
Even things like Glutamine, Gaviscon cause problems .. I start to feel tingling in my nerves.
Go figure.

Dr. Koufman was the one who told me - "I am an outlier within the outliers". She has never seen a patient like me. She insinuated that a lot of it is in my head and I need to sort out my mental state. Anyway .. I can understand her frustration with me. I don't think the doctors can do anything if they can not experiment with drugs on you. You go to natural / holistic types of people and not to medical doctors if you are in a situation like mine.

I think she is competent. She can attack the problem in different ways .. she is an excellent ENT and has a lot of knowledge about the GI as well. However, she is quite moody and quite impatient - especially with patients like me.

Anyway, I do recommend her though. If you can tolerate the various medications - she will find you a combination that can get you out of your situation. She did say - "I don't want you to just feel better .. I want you to get well".

Good Luck.
Posted 12/9/2011 3:44 AM (GMT 0)
PPILess
wow-- I'm sorry--not even gaviscon? that really sucks. I hope that you are feeling somewhat better!!
Posted 12/9/2011 3:53 AM (GMT 0)
Thanks Belljar.

You know .. compared to 6 months back, I've been feeling better.

As I've indicated in my other posts, breathing exercises really help me (there is this called sudarshan kriya yoga - that they teach you at Art of Living Foundation). I've started to get good hours and good days .. when I can get a break from my symptoms. My symptoms in the throat have also gone down considerably. Burning in the chest has reduced but when it I get it, it does cause discomfort and pain. On a scale of 1-10 where 10 was me at the worst, I am between 2-4-5.

I do a lot of other natural stuff:
fennel seeds, turmeric, honey, ginger, mango-ginger, tukmaria seeds, holy basil leaves in water,

In a way I am glad I am not dependent on the acid reducers, but sometimes I wish I could take just 1 of those and feel better. I think I have a mild version of this disease .. but without medications is quite a challenge to stay on top of the symptoms.

So, I am stuck in somewhat of a limbo - mild disease but can't use the meds .. mild disease so can't rush to the surgery... so have to suffer the symptoms ..

Post Edited (PPI-LESS) : 12/8/2011 9:01:10 PM (GMT-7)

Posted 12/9/2011 4:02 AM (GMT 0)
PPI-LESS,

I think you're actually in a good position.

To be not dependant on the drugs is huge plus. However, something needs to control the symptoms.....

Honestly, if I knew that my condition would not get any worse than it is now, I could live with it....but I know it's not getting better. The constant gaseous form of LPR is doing damage into my mouth and I need to do something. I hope Nissen works.....

Prior to LPR/GERD, I was a healthy young guy, going to the gym almost everyday......I lost about 10-15lbs since.....but I've gained it all back and more. I want to gain a little more weight in preparation for the weight loss from Nissen......is that odd? lol.

I just got some Gaviscon Advance and tried that out too......I can't really say after one try......but I'll post my results from the med soon.

I gotta give my surgeon's office a call soon to book the appointment before December ends.....wish me luck guys.
Posted 12/9/2011 4:02 AM (GMT 0)
PPI-LESS,

I think you're actually in a good position.

To be not dependant on the drugs is huge plus. However, something needs to control the symptoms.....

Honestly, if I knew that my condition would not get any worse than it is now, I could live with it....but I know it's not getting better. The constant gaseous form of LPR is doing damage into my mouth and I need to do something. I hope Nissen works.....

Prior to LPR/GERD, I was a healthy young guy, going to the gym almost everyday......I lost about 10-15lbs since.....but I've gained it all back and more. I want to gain a little more weight in preparation for the weight loss from Nissen......is that odd? lol.

I just got some Gaviscon Advance and tried that out too......I can't really say after one try......but I'll post my results from the med soon.

I gotta give my surgeon's office a call soon to book the appointment before December ends.....wish me luck guys.
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