Swallowing problems after surgery?

[mallory]

I feel like all I'm doing is asking questions, but I just had a second appointment with the surgeon and the news wasn't very good. He said it's very possible that I'll have swallowing problems after surgery or that I won't be able to swallow at all, which really scares me.

Has anyone experienced this who would be willing to answer some questions or explain what it's like?

It's not what I was expecting to hear at the appointment at all, and I'm scared about the fact that I'm perfectly healthy now with few symptoms, and could come out of the surgery being really sick.

[lori67]

Mallory --

Ask away!  It's perfectly normal to have a zillion questions!

I've heard of some people having some difficulty swallowing, but I've never heard of anyone who couldn't swallow at all.  That doesn't mean it hasn't happened, I just haven't heard of it.  I did and still do have some numbness in my tongue that can make me choke on things if I am not careful, but it certainly hasn't stopped me from eating/drinking/talking...  I certainly wouldn't expect to be able to chug a beer or anything (good thing I'm way past college age, huh?), but other than that, I don't think I'm limited at all.

I would think, and I could be wrong, that if your hypoglossal nerve isn't manipulated too much during the surgery  and the AN isn't adhering to it, it wouldn't be a real problem.  Maybe it's just a case of your doctor giving you all the possible post-surgical problems, no matter how infrequently they actually happen.

What surgery are you having?
Lori

[mallory]

My tumor is a bit further down than an AN (which they originally thought I had), so it's affecting mostly my swallowing and voice nerves.

I don't know yet what kind of surgery I'll be having since my surgeon is still talking with other doctors to figure out what they can do, and the way he was talking about the complications didn't make it sound like slim chances, which is what has me a bit scared!

[lori67]

Ah, so another one trying to be unique around here, huh?   

Okay, well I guess what I said doesn't really help much.  I think I'd be nervous too.  Hopefully your doctors can come up with a good plan.

If it helps to vent, I can help with that!  I've still got one good ear!
Lori

[lacey7]

Hi Mallory,
I'm sorry for what you are going thru.  I would be scared, too.  When is your next appt. with the surgeon?
Keep us informed, ok?  I'll be praying for you.
Let us know if we can help in any other way.
Lacey

[sgerrard]

Hi Mallory,

Sorry to hear the news. The only case I can think of is Robyn's son Eric, who had swallowing and throat issues after his surgery.

Is radiation treatment a possibility? It seems like it might avoid damaging the "swallowing nerve," which ever one that is.

Best wishes to you.

Steve

[Kaybo]

Mallory~
I had some issues after surgery, but not where I couldn't eat or drink - mainly just choking.  The right side always felt "different" and it seemed that if food/drink went down that way, I had trouble - I know that sounds crazy b/c your throat is your throat!!  If that "side" got too dry, I would start coughing uncontrollable so I ALWAYS had something to drink with me.  That wouldn't totally relieve it though.  Funny thing is that after I had my thyroid out a couple of years ago, I don't have that problem anymore!!  I don't see how they can tell you before they get in there - it just seems like a lot of people have expressed that it was different than the Dr. thought once they operated.  It is good that you be prepared for different possibilities, but let'd HOPE for the BEST!!!  Incidentally, "crookedsmile" had a feeding tube for a while, i think - you might want to PM her.

K

PS - I had the same surgeon as Robyn's son...hmmm.kind of makes me wonder...

[28Lisa]

I couldnt eat or drink 3 months of NOT eating or drinking I had to be trained to do so from a speech therapist and you eat and drink in different stages before you go back on regular foods,before ypu're allowed to go back to a regular meal I had to undergo a nasalscope where they make u swallow different foods and drinks, the report goes back to your speech therapist and she/he gives you the stamp of approval... but its worth it cuz I can do both now easily so you shouldnt be worried....

[Crystal]

Mallory.

Sounds like your tumor is a different critter from an AN tumor, but they still have to go in with similar methods so folks here can help you with a lot of the preparation and recovery tips. I did a quick check and I don't see any obvious forums out there for your tumor.

A local TV personality in my neck of th woods has a similar kind of Tumor. She has hers debulked every 10 or so years and they leave part of it in so not to risk  some of those side-effects you fear.

It might be worth asking your doctor about debulking rather than removing. . . . your path may be set but it might be worth a shot.

God Bless,

Crystal

[petittrv]

Mallory,

My doctor gave me that as a possible outcome also but stated it would be temporary.  If it happened, they perform a trachiotomy until the nerve recovered enough to swallow again.  Fortunately it did not happen and he stated it was rare but not out of the ordinary.  There was another patient in an adjacent office having his trachiotemy looked at as they prepared to close it up (I don't know how long he had to keep it open) when he was telling me this, so the possibility was there.  Not to scare you, but I felt that if it happened it would not be a surprise and the doctors would be prepared to deal with it.  And after time it would just be a memory (albeit not a nice one) anyway - just another learning experience to put in this big book of knowledge that I never wanted to know.

Rick

[calimama]

I was advised there was a small risk of this, and i think that would have been a big issue, but I didn't experience any problems. Good luck.

[maggiemay]

Hi.  Sorry I'm a little late resonding to your post.  I live in Canada. I just started back to work after almost 3 years away due to surgery for a a 3 cm AN. (surgery was in Feb. 2006 at Sunnybrook hospital in Toronto).

I was expecting to be in hospital for 1 week after surgery, but due to throat paralysis (on left side) I was unable to swallow and had a feeding tube in for 2 weeks. I had to stay an extra week to make sure I could swallow after the tube came out. I lived on thick fluids, cream soups and purees for about 2 months. I had a dietitian and a speech pathologist visiting my home weekly and with their help learned to manage my dysphagia.

I have gradually worked my way back to near normal foods (raw veggies and nuts are a challenge). I need to concentrate on swallowing and must have a beverage on hand at all times while eating to help wash things down.
I lost 25 lbs, but have managed to gain back 15 (I went from 139 to 115lbs and now am up to 130).

My doctor said this happens to fewer than 30% of AN patients who undergo surgery, so hopefully you will be in the clear after your operation.

I hope you will be fortunate enough to not need this info., but if you need more, just ask.

Best regards.

[jgr01]

I had issues swallowing right after surgery, I was rushed down for a CT scan for fear I was bleeding into the brain, thankfully I was not. It wasn't clear as to why I had difficultly and is lasted several weeks. It prolonged my stay in ICU, I had speech therapy and was given tongue exercises as well as the facial exercises. Drinking through a straw was impossible, but yogurt became my favorite food. Something in the consistency made it easier to swallow then water.

[CROOKEDSMILE]

Had paralyzed swallowing nerve and facial nerve after surgery. I had microvascular decompression surgery (craniotomy) for hemifacial spasms. Too much traction was placed on these two nerves. I woke up with a feeding tube down my nose and it stayed there for 6 weeks. Lost 20 pounds. I did learn to eat again starting with liquids in a tiny syringe and slowly increasing consistencies. I went to ice cream, puddings, etc. Then finally many weeks later meats and bread which I still cough and choke on 15 months later. Swallow study was done and I still have weakness at the base of my tongue. Exercises prescribed. I had a feeding pump at home that did nighttime feeds around the clock...The worst part of the feeding tube was that mine kept coming out when I would cough and I would have to go back to the hospital to have them reinsert it down my nose into my belly and then xray to make sure it was in the right spot. Praise God that I can now eat and drink anything that I want I just have to go slow and be careful with hard to swallow foods i.e. anything that crumbles! Bread! Meats! It was really hard not being able to eat. I remember draining black eyed pea beans and sipping on the juice from the beans from a syringe just so that I could have a flavor of something in my mouth. Sounds gross but man it was good after having nothing to eat for 6 weeks.  You're not supposed to have anything by mouth because you can aspirate very easily so I don't recommend this. Nothing like good ol bean juice down in the lungs! Yikes.
I pray that you won't have problems but if you do....know that with time you will improve.
Angie

[Maverell]

Yep - I had swallowing problems after surgery and was fed by a tube for a few weeks. Then I moved onto fortified milk shakes for two weeks, and after that  I could manage solids. ( LOL I sound like a baby ). No one can undergo such surgery and expect to come out unscathed !