Vagus nerve and GP

Ok. So, it is the vagus nerve that is responsible for the problems that us GPers have. Does anyone see a neurologist?

I am an two-year idiopathic GPer. I see a motility specialist at Dartmouth in NH. Although he is optimistic about my outcome (that I will eventually heal), there is NEVER any discussion as to what to do to HEAL me rather than just treat the symptoms. Never has there been a mention of seeing a neurologist. If it is a problem with the a nerve, why am I not referred to a neurologist?

Any thoughts?

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AMO1962 - Hi I actually do see a neurologist but it is not for GP. It is for migraines and tremors. I did not like the type of medication that they give for tremors.. It's far to sedating I'll live with the tremor I already have more fatigue then I ever imagined possible! I haven't seen him since I had received the diagnosis for GP in fact I haven't even seen my GI face 2 face yet! I see the GI on January 30th. I'm thinking that you are not getting sent to a neurologist because there is nothing that can be down to fix the nerve if that makes sense. It also probably depends on why you have the GP. I think in my case it is for a connective tissue disease which effect the motility in my stomach and can effect other areas of the GI tract as well. There is that Pace Maker for the stomach my guess is it probably stimulates that nerve into acting up. Maybe do a little research into that aspect of it all. I'm thinking a GI would still do that surgery but I'm not 100% sure with that. Next time I do see my neurologist I will ask him if they do deal with GP patients and at all and I'll let you know what he says.. if i remember you are welcome to remind me but I don't even have an appointment at the moment.

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Jalee85

Thanks for your response. I have GP after a severe flu-induced pneumonia. No connective tissue issues, no auto-immune disorder, no surgeries, basically no nothing.....

I know about the gastric pace maker but have yet to read anyone say that it is a totally good thing, so I am leery. Also, my GP is episodic. As in, I go through periods where I have no GP symptoms as long as I stick to the diet and take my meds. But after getting sick, I fall through the rabbit hole (that is how I describe it to my friends). Does not matter how small/insignificant the illness is, I tumble into severe nausea, vomiting, and have to return to my j-g tube for nourishment.

But back to the vagus nerve.....if it can work sometimes, I want to know what I need to do to make it work ALL the time.

You however may be correct. There may be nothing to do to heal it.

Thanks again for your response.

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Sorry you are dealing with so much I have moderate GP it was dx on December 6th and for now all I got was a letter on the GP diet I see my GI on January 30th the diet did not click well with my body.. I got really backed up and started bloating up. I've read the GP is not a disease/condition that can be reversed... but I hope I just have not read up enough on it. I did't mean to suggest that you do the stomach pace maker just that is the only thing I know of that really addresses the nerves..

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I was curious to see if the motility specialist you saw was Dr. Lacy? He is the one I saw at Dartmouth and I like him very much. He did say the only gp patients of his who had healed were those who got gp because of the flu. If your vagus nerve has been damaged by something else after the first six months it is unlikely to change.

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One person seems to have been healed using Eastern Medicine, and some people have had some luck with acupuncture. Those may be some alternatives you want to consider. Best of luck!

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Thanks to all for the responses.

Jalee, I understand that you were not suggesting the stomach pacemaker--just wanted to share that all that I have read, either here on this site and other places, points to only slim to moderate success for most.

Booters-Yes, I see Dr. Lacy and yes, I do like him very much. And as I mentioned, he remains optimistic. On my first appointment with him, he stated that he predicted that within 18 months to three years that I would "heal". As far as I know, nothing has further "damaged" my vagus nerve other than other viruses. However, Dr. Lacy has never seen me during one of my "episodes" although he has seen me very underweight. My frustration is TREATMENT of the PROBLEM, not of the symptoms.

BW-I have been going to an acupuncturist for over a year. And although it does help with the symptoms, there is no treatment of the problem.

Sigh, thank you all for words and encouragement.

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AMO1962
Your situation sounds very like my daughter's. Her gp started after a virus and is episodic. During an "episode" (for want of a better term) she can keep nothing down at all and it will a very slow recovery that is typically six months before she will be back to whatever the new normal is. The trigger has been mild stomach bugs and one time a cold. I totally agree that I don't understand why the doctors don't want to get to the root cause. She has been to neurologists and rheumatologists to look into the whole nerve damage issue and to try to determine if there is an auto immune link. This was because she (and I) pursued this and not because of any advice from any gastroenterologist. They were of absolutely no help whatsoever. At this point if she gets sick again I think it will be treat the symptoms because no other specialty seems to know anything about this condition. I really feel at this point that she has exhausted all those other lines of enquiry.
Like you she has also had to get the g-j tube - this got her through her last episode. However, she did get the pacer back in February, 2011 at Temple and it definitely has helped her. The food doesn't come up, she seldom is nauseous, and she can eat reasonable quantities at one time. The variety of foods is lacking but I think part of that is that she's nervous to try. She plans on having the tube removed in the next couple of weeks as she hasn't used it in a long time and the plastic is deteriorating.
I wish I could tell you that somebody in another specialty has the answer but it doesn't seem that way. If you find out anything pass it along:)
Good luck. If I were you I would look into the pacer - it has definitely been a godsend for my daughter.

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Mom135

Thanks for your response.

And you have kind of voiced my fears. The gastric pacer. The thought of this scares me--not only because it is new, there is not much solid research on it (I am a research-aholic) and many on this site have struggled with it. I know this site--although terribly helpful and wonderfully supportive--is not a representative sample of those who have had the pacer, but the number of stories of misery with it make me SO leery.

But questions to you. What has your daughter/you been told about the pacer? Is it a forever kind of thing? I have read a number of folks have to "fiddle" with how strong it is, etc....even a few that have had it removed because of infection, problems, etc.

Thanks for your words and info.

Peace

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Every new step on the development of this disease is scary in my opinion. When my daughter was first sick I was horrified at the idea of her ever having to get a feeding tube. I bet you were too. Yet when I saw her totally unable to keep food down and going three times a week for fluids the idea of a tube suddenly became not so bad. It's amazing what a person can get used to when the circumstances dictate.
As for the pacer - after she got the tube it seemed like that was the only option that was left. Opinions on it are very divided especially for idiopathic gp. However in her case it has absolutely helped. Dr. Parkman (the gastro doc. from Temple) has his own protocol for the settings. He starts with everything low and goes from there. I gather if the settings are low then the battery should last longer. She has only been back once shortly after the surgery and the nurse made a very minor adjustment. She goes again in a couple of weeks but only to check that the settings haven't slipped as it seems to be fine as it is.
He was supportive when Carly asked about it but he didn't push it - he claims it is 50/50 for idiopathic patients. Supposedly it helps with nausea and vomiting - she didn't have a lot of nausea but the food would come up all the time. It took a while for her to really see improvement - it was slow but steady. Now she is able to eat reasonable quantities though she limits what she eats. She still keeps away from fibre and fatty foods. I find the stories of people tucking into a big meal after getting the pacer to be odd. She was in a lot of pain from the surgery for several days but after that she has had no issues. As for the future for her - who knows. The pacer brought her back from her last episode but she doesn't know if it would be enough if she got another virus and had a huge relapse. When the battery dies (we are hoping not for 7-10 years!) I guess she will find out how much it helped and whether she should have it replaced. Hopefully it will still be available!!!! Seems to me that it is going somewhat out of fashion but that's just an impression. It has been around for around 10 years - not sure if you knew that. Dr. Parkman told us that as he has been doing them for that long and he was one of the pioneers.
Honestly - I think, if it works, that this is a better option than a feeding tube - at least it has been for Carly. I hope this helps.

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One more comment - go to a doctor who has done a lot and has had a lot of experience dealing with it.

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Mom135

Thanks SO much of all your words and advice. Temple does seem to be the place to go in the northeast (I am in Maine). And yes, go to someone who has done it ALOT, which is true with all surgeries.

I see my specialist at the end of Feb. We'll see if I am in an "episode" and what he has to say.

Peace

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The best of luck. My daughter saw Dr. Kuo at Mass General - he was great and his nurse practitioner was wonderful. His area seems to be the smart pill - didn't tell him much for Carly as it never left her stomach but I guess that said something!!! He doesn't do the pacer - said he doesn't find the results compelling enough for him to support it - sadly. It would have been a much nicer hospital to deal with than Temple - they were very efficient and organized there.

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I've seen a neurologist before, but it wasn't for my GP. A nice and really talented GI doctor can take care of GI issues from the vagus nerve :)

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I broke my Ci vertabrae in 2 places. after 6months of neck braces that did not work. I had metal plates attached to my skull with metal framework attached to c6 vertabrae. during operation my vegus nerve was accidently cut. I now suffer from inability to swallow, no gag reflex, constant high pitched sounds from both ears, memory loss, and severe constipation. my surgeon says its impossible to cut vegus nerve from backside of skull and spine. I need a doctor and & attorney to prove they are lying. Sentara hosp aretrying to screw me

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