Swallowing?

[chrisransom]

When I first found out about my AN a year or so ago I read up on all I could find and joined this forum to learn as much as I could.  I am in W&W and am trying to be hyper vigilant about  any symptoms that could indicate growth/change.  But a few weeks ago I had an "aha!" moment and was wondering if any of you have had similar issues, experiences, regarding swallowing. (I have not asked a doc about this yet.)

History - for years and years and years I've had this "feeling" in the back of my throat that felt like I had something stuck - I always thought I must have a large uvula (hate that word) and it was touching the back of my tongue.  Its a very disconcerting feeling at times and quite annoying.  But my doc always said my uvula (really hate that word) was normal and nothing was touching anything.  So, like tinutus, I just became used to it.

A couple of years ago I noticed that at times swallowing was quite difficult - not choking but sometimes things just didn't go down when I told them to.  I have to take a deep breath and relax and just do it again.  My "aha!" was in re-reading some of the ANA brochures and I saw that one of the many nerves that goes quite close to the ones typicallly effected by AN ( 7 and    is number 10 the nerve involved in swallowing.

I've read about swalling issues in some of the archives but they seem to be more post-procedure effects.  Does anyone care to weigh in on whether perhaps this AN has been effecting my swallowing nerve all these years (or not)?   Thanks!

[Tumbleweed]

Hi, Chris:

The other cranial nerve that controls swallowing is the hypoglossal nerve, or cranial nerve XII. Try this test: stick out your tongue. If you can't stick it straight out (it deviates to one side or the other), your hypoglossal nerve likely has a tumor growing on it. However, you can have a hypoglossal tumor and still have normal tongue function. That's because the hypoglossal nerve is a motor nerve, and motor nerves are generally very resilient; i.e., it usually takes a fairly large tumor to disrupt their function.

Definitely tell your doctor about your difficulty swallowing. That is not normal. Have your doctor take another look at your MRIs, with an eye directed at the hypoglossal canal (which is situated at the base of the skull) to see if there is any indication of a tumor there. If you have a copy of your last MRI series and are somewhat proficient at reading it, look at the area a little below your AN. Also check the mirror-image area (on the opposite side of the brain).

I don't want to freak you out. There might be a harmless explanation for your swallowing difficulty. But I would not assume that's the case. You need to get it checked out.

Best wishes,
TW

[Tod]

Chris,

Swallowing is a fairly complex process and there are a number of ways it can be affected. In my case, I have impairment of the autonomic (involuntary) processes. There is very little peristalsis taking place and this means some foods require a lot of liquid. It also means that all the normal mucous that covers the tissues in the sinuses, the airway, the mouth at all, does not "flow" easily down to the stomach. It gets stuck, so I frequently have to clear my throat and cough stuff out. It can also leave to coughing fits, which are now down to about 1-3 per day.

Keep in mind, I started this journey with a large tumor and the docs were surprised that I had no swallowing difficulties prior to surgery. Your tumor *may* be responsible for your difficulties, it may not. There are both better and worse possibilities out there, so I would simply discuss this with your docs at your next appointment.

Good luck,

Tod

[mk]

I would take TW's advice and ask my doctor to investigate closer this area. Swallowing difficulties prior to surgery are exteremely rare with ANs (I don't even remember having read of such a case) and always involve much larger tumors, since the nerves responsible for swallowing are located much lower. I had a much larger AN than yours and was told that it had just started to touch the IX-X-XI nerve complex.

Marianna

[alabamajane]

Hi chris,
I did have some of the same type of swallowing issues as you discuss. I had had thyroid removed several years ago and just attributed it to that surgery as a muscle was involved in taking it out and Dr told me I might have some trouble till muscle "healed".. but after being diagnosed with the AN, now I see that it may have been the culprit also.. mine had extended out of the IAC into the CPA and was pressing on the brainstem and it was not really large size, about 2.8cm..The surgeon asked me after looking at the MRI he did right before surgery if I had experienced any swallowing problems as tumor was growing toward the nerve (11th?) associated with swallowing. I told him I had,, really similar to what you describe in that I would not choke per se but whatever I was eating would not "go down" on its own and it was VERY frightening! I literally had to tell myself to just relax and not panic in order for food to finally move on down.. I could not get food up or to move on down.. I believe it was a combination of location of AN and brainstem involvment, but that is just my interpretation of Dr info,, I am not a dr.... I would suggest you mention this to your Dr also as it may well be related .. try to determine from him the location of the tumor, , if it extends out of the IAC, auditory canal, it may be impacting more nerves.. just my two cents.. Jane

[chrisransom]

Thank you all for the advice - i will definitiely bring it up at my next follow-up appt in June.  Definitely worth more than 2 cents!

[Nimrod]

 Hi Chris,
 I'm a newbie to this whole thing. I would suggest you see a gastro specialst about the swallowing issue. I had some serious gastro trouble a few years back.
 Don't put this off too long as it is worth knowing that it is not Barrets or worse.
 I'd be happy to discuss further if you need.
 Craig

[chrisransom]

Thanks all - good advice.  As I said, this is nothing new to me - I've experienced it for years.  Only just in the last couple of years with a little more difficulty only some of the time.  I just take a deep breath and concentrate and it's all good again.  I'll definitely bring it up at my next follow-up visit in June

[Tumbleweed]

I'll definitely bring it up at my next follow-up visit in June

If it were me, I wouldn't wait. I would at least call or email your doctor's office and let them know about your swallowing difficulty. If, God forbid, you have a hypoglossal tumor, it is not likely it would be causing swallowing problems unless it were already fairly large. (That's because the hypoglossal nerve is very resilient and its function not easily disturbed.) A hypoglossal tumor is also potentially much more serious than an AN. Waiting a few months for news about an AN is typically no big deal. While hypoglossal tumors grow at roughly the same rate as ANs do, the fact that they affect swallowing -- a critical function -- makes them more serious.

It wouldn't hurt to ask your doctor to take another look at your last MRI series to see if there is any enhancement in the hypoglossal canal on either side. You won't even have to go in for an appointment; that can wait until June (if nothing unusual is found on re-examining your MRIs). But your doctor should be able to immediately look at your MRI series again, without you being present, to rule out a hypoglossal tumor now.

Again, it might be something else that's causing your problem. But there is no good reason to wait to tell your doctor about it. And the potential fallout from waiting is significant.

Best wishes,
TW

[chrisransom]

IN that case - I'll make a call tomorrow for a phone consult.  Thx!