Surgery Decisions .. advice

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aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 6/9/2011 3:40 PM (GMT -6)   
I think it is time I took some decisions ...

- I've been experiencing LPR symptoms (throat hoarseness etc.) for the last 3 months now.
- I tried PPIs and H2s for 4-5 weeks - which helped with my symptoms but I could not handle their side effects, so had to stop them (hence this username)
- I went and saw Jamie Koufman who has put me on gabapentin. I've been on it for 3 weeks now but it hasn't quite helped with my throat symptoms yet - but did help with my anxiety and nausea. I will be going back for a followup and will know more from her on what my throat has to tell her and what other options she may suggest for me.

I guess I am running out of options and I just can't live with this terrible madness that is in my throat.

Here are my options:
Option #1: Live like this forever and hope that this thing goes away at some point
(I am not sure this really is an option)
Option #2: Get the Linx device implanted and see what happens. If doesn't work, get it removed.
Option #3: Get the Nissen Fundoplication

Am I missing any other option here?

It would seem that I am rushing into surgical options after such a short time of suffering .. but I am just crazy like that ...

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/9/2011 4:13 PM (GMT -6)   
I don't think it's rushing.
After my doctor gave me the surgery option I had my surgery in less than one year. I couldn't continue the way I was before the surgery. I was constantly coughing and choking on reflux.
Joy

Chuck T
Regular Member


Date Joined May 2011
Total Posts : 143
   Posted 6/9/2011 5:29 PM (GMT -6)   
Id talk to Dr. Kaufman about it first. But the LINX device sure makes just "giving surgery a shot" a much easier choice. What did she say about the condition of your throat? Have you tried simple remedies like gargling baking soda water, slippery elm, eating small meals, etc...? Does Dr. Kaufman take insurance, or did you have to pay for it out of pocket?

If you remember to ask, I had something I was interested in asking Dr. Kaufman. I actually posted about it on this board a few weeks ago, and even emailed Dr. Kaufman (no response). Anyways, as we all know from Kaufman's research Pepsin appears to be the main culprit behind tissue deterioration in LPR patients. I read that hexylresorcinol actually kills pepsin. Apparently it is found in some less common cough drops. I was wondering if Dr. Kaufman had an opinion, or had researched this as a possible treatment for LPR patients.

Keep us posted on what you find out.

Neptunian808
Regular Member


Date Joined Dec 2010
Total Posts : 86
   Posted 6/9/2011 9:55 PM (GMT -6)   
have you talked with a surgeon yet? i don't think they would be willing to perform antireflux surgery on a person with a normal motility, if they are please let me know cause i'll buy the plane tickets tomorrow lol.


why did dr. koufman put you on gabapentin?

Post Edited (Neptunian808) : 6/9/2011 10:00:36 PM (GMT-6)


Neptunian808
Regular Member


Date Joined Dec 2010
Total Posts : 86
   Posted 6/9/2011 9:57 PM (GMT -6)   
@chuck t which address did u use to contact dr koufman, i tried her website and an aol email address but no response either

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 6/10/2011 4:21 AM (GMT -6)   
Neptunian,

- No, I haven't talked to any surgeon yet. So, you think they are not going to allow Nissen on people with normal motility?

- Dr. Koufman did a test called LEMG - where they see the nerves/muscles of the throat and whether the vagus nerve was the cause of this .. and according to the test I may have had PVVN (post viral vagal neuropathy) and so she wanted to do trial and error to see if gaba may help me with my symptoms - even though "chronic cough" is not one of my symptoms.

From her blog:
Treatment of neurogenic chronic cough is somewhat different than other neuropathic conditions. For isolated cough (no-LPR), I usually start treatment with tramadol 25 mg q.i.d. p.r.n. or amitriptyline 10 mg q.h.s. If LPR is also present or there are other symptoms, then I tend to start with gabapentin 100 mg q.i.d. and then escalate the dose as needed (usually to 300-500 mg q.i.d.) depending on the side-effects and results. Those medications may be used alone or in combination, and the most common combination is gabapentin with a small dose of amitriptyline at bedtime. In my practice, pregabalin and baclofen are second-line choices for special situations.

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 6/10/2011 4:23 AM (GMT -6)   
Chuck - Dr. Koufman does take insurance and thankfully I have good insurance - although she was "out of network" for me.

Neptunian808
Regular Member


Date Joined Dec 2010
Total Posts : 86
   Posted 6/10/2011 9:03 AM (GMT -6)   
@PPI-LESS yeah i doubt they will be willing to operate on you with those manometry results (it happened to me, normal les, no one wants to touch me, that's why im looking for a different solution but before the manometry i was determined to get a nissen or roux en y surgery because this is probably bile reflux)

If anyone is willing to perform a nissen or any other type of antireflux procedure on you please let me know.

she put you on gabapentin for PVVN but what about the reflux?, does you larynx look swollen?

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 6/10/2011 9:16 AM (GMT -6)   
Neptunian,
- Gabapentin calms the nerves down and the idea was that may be the vagus nerve through its length can also be calmed down which may be causing these TLESRs in my case. Dr. Koufman would've put me on the PPIs also for the reflux if I could have tolerated them.

- I've seen other mentions of people with regular motility results getting the Nissen, but I will have to find out when I talk to the surgeon .. I haven't reached that far yet.

- I do know that the Linx device surgery candidacy - on the other hand - requires one to have good esophageal motility. My concerns with the Linx device are: 1) some people have experienced pain 2) not sure if it can completely stop all the reflux or not so not sure if the throat can be healed or not

Mine is acid reflux since the PPIs when I take them does reduce this reflux (but they give me side effects so I can not take them)

My larynx was swollen a month back when I'd gone to Dr Koufman (and along with LPR the secondary diagnosis was: vocal cord paresis). I will be going back to her next week for a followup. She'd mentioned that I can get the surgery done (and she *has* my manometry results) - but I will ask her again and get some names of the surgeons etc.

Post Edited (PPI-LESS) : 6/10/2011 9:20:06 AM (GMT-6)


Chuck T
Regular Member


Date Joined May 2011
Total Posts : 143
   Posted 6/10/2011 10:26 AM (GMT -6)   
@Neptunian I tried the website email, but my question was really off the wall, and more theoretical.

@All - So I will be in NYC for a work trip next week, and have the opportunity to fly up early and meet with Dr. Koufman (she has an opening at 1:30 on Monday). My LPR Symptoms have improved recently, but im not sure if its because of the PPIs, or the alternative treatments that I have been using. I still have symptoms though.

My question is, should I fly up early, and meet with Dr. Kaufman (will really only cost me the co-pay, and the cost of one night NYC hotel). Or should I finish the 3 month treatments of PPIs that my original ENT put me on (3 weeks left).

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 6/10/2011 10:34 AM (GMT -6)   
Chuck - Since you can use the PPIs and your symptoms are improving .. it looks like you'll be fine.

Since you are there only for a day - Dr. Koufman is not going to do anything more than the throat lookup test anyway .. (in my case I was there for 2 days so we did the ph/manometry etc.). So, I am not sure if you'll get any more information from her.

My 2c

Chuck T
Regular Member


Date Joined May 2011
Total Posts : 143
   Posted 6/10/2011 10:50 AM (GMT -6)   
Just found out she is out of network for my insurance anyway. Wanted $2 grand (down from $6 grand) to come see her. Oh well. Thanks guys.
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