Author Topic: Frequent choking and swallowing "wrong"  (Read 2434 times)

amymeri

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Frequent choking and swallowing "wrong"
« on: October 17, 2010, 10:38:20 am »
Hi everyone

I had a largish (4cm) tumor removed 4 years ago.  Besides a loss of hearing I have trigeminal numbness, some facial paralysis/hypertonicity and occ double vision. Most of these things I can deal with but one very distressing problem is a tendency to choke.  I never had this problem before the surgery but now I often have things "go down the wrong pipe" and it causes coughing and choking.  A couple weeks I almost had an emergency choking episode and needed assistance!  Very scary.

This actually seems to be getting worse, not better.  I am sure that damage to some of the cranial nerves involved with swallowing are responsible, but I am wondering if anyone has experienced a similar problem and found a solution?  Perhaps some sort of treatment?

I am considering visiting my ENT for advice as well, and perhaps I need some kind of occupational therapy.

Thanks for any insight!
Amy
Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

Cheryl R

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Re: Frequent choking and swallowing "wrong"
« Reply #1 on: October 17, 2010, 11:14:47 am »
Amy, Have you had a swallowing study done with a speech therapist?         If you haven't this could help and see how to help the swallowing and maybe even if need a certain type of diet.       There is a chin tuck that people with swallowing issues use when eating past each bite.     I know this seems like something only a stroke pt would use but there are other swallowing problems too even if not does not know the exact cause, like in your case with questionable nerve damage.
                                             Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Tod

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Re: Frequent choking and swallowing "wrong"
« Reply #2 on: October 17, 2010, 12:06:56 pm »
Amy,

I have this problem but am only 8 months post.  I was advised while still in the ICU to learn to swallow when turning my head clear to left, with my chin almost over my shoulder. I've chose to ignore this and cope in other ways.

In my case, there are two issues. The first is a paralyzed left vocal cord. This can affect the ability to swallow thin liquids (and anything else, but thin liquids are the worst) and I had a barium swallowing test while in ICU for confirmation of the risk and problems. To treat this, I have had three injections to the vocal cord to enlarge it enough to allow the right vocal cord to close against it. This gives me what speech ability I have. It also allows me to eat and drink most foods.

The nerves and muscles controlling autonomic swallowing and such are also inactive (this is the second issue). There is not much we can do about this except wait and hope for recovery. In the meantime, I am simply very careful about how and what I eat. No eating while driving. No casual eating (i.e. picking a cookie up and eating it while walking through the house). Always have a drink handy. Picking food I can eat, especially in public or group settings. And being very aware of my eating with each bite.

Do you also suffer from coughing caused by the inability of your throat to handle the normal mucous that coats the sinuses, the airway, and the throat? In some ways this is the worst for me because I have such bad choking fits.

I think Cheryl's suggestion of a swallowing study is a good one. You should certainly consult with you PCP and a speech therapist. Do you have difficulty speaking? Are you starting to run out of breath when speaking?

-Tod


Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Crazycat

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Re: Frequent choking and swallowing "wrong"
« Reply #3 on: October 17, 2010, 05:37:49 pm »
Amy,

With the exception of facial paralysis, your symptoms seem to be a great deal like mine. I too have difficulties with swallowing. I have found that it can be especially dangerous when I begin to eat as the esophagus is tight and narrow. It is only after I've been taking in the food after a while that it widens and everything goes down easier.

My advice is to simply take your time when chewing and ingesting and, more important, start out slow with small bites. When we're hungry, we then to rush and devour food. Try to be aware of this at all times and simply take your time.

In my case, this condition—which is fairly common with cranial nerve patients—is compounded with another weird, albeit fairly common malady that is medically referred to as "esophageal spasm". It is the tendency for the esophageal sphincter opening into the stomach to tighten and close while the esophagus convulses, similar to how the intestines convulse during peristalsis as food is moved through the intestinal tract during the digestive process.

Esophageal spasms are a painful and miserable ordeal to suffer but are not related to AN surgery or cranial nerve problems. In fact, they are the inverse of acid reflux where the esophageal sphincter remains wide open, allowing acid to backwash up into to the throat (a condition, I believe, that is even worse).

While they don't always happen, the spasm attacks (if and when they happen) always occur with the first few swallows of food. They are distressing and painful enough to make a person leave the table and go outside so as to constantly cough, expectorate and even vomit in an effort to blow out whatever food has become trapped at the opening of the stomach. The attacks can last as long as an hour before they pass. Most often the esophagus will relax and the sphincter will open in time and on their own without having to vomit and the length of time can vary from a few minutes up to an hour.

The reason for the constant expectorating or spitting is that because while the sphincter is closed, nothing can get through, not even saliva. One of the worst things you can do during an attack is try to wash it down with water, as it just backs-up into your throat and out your mouth. An ugly and disgusting mess.

I've been at restaurants when it's happened and had to leave the table and wait it out in the parking lot. The strange thing about this condition is that while the attack is happening and I'm doubled over in distress and agony, all I really want to do is enjoy my meal as I'm not really "sick". Many a time I'd make myself vomit and say "Ahhhh, now I can eat!", and then everything is alright.

Getting back to your situation....Just take your time. Small bites, chew thoroughly and you'll be okay.

Take care.
« Last Edit: October 17, 2010, 07:23:25 pm by Crazycat »
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

amymeri

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Re: Frequent choking and swallowing "wrong"
« Reply #4 on: October 18, 2010, 02:42:37 pm »
Thanks everyone

I went back and looked at the archives and some some other people with this problem.  I am going to pursue a swallowing study.  I suspect that because my right tongue, teeth and cheek are numb and my tongue dexterity on that side is compromised, I don't move food around well on that side.  I usually chew and swallow on the left but I think sometimes the problem lies in not "managing" my right side.

I also notice when I have this problem I am often talking and so inhale the food.  The time I almost choked I was talking to friends and as I finished my sentence I took a bite and inhaled it.  I need to take smaller bites, and concentrate. 

It is so scary to choke!  It is starting to make me a little paranoid to eat, so I think I need to get some medical advice. 

Amy
Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

Crazycat

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Re: Frequent choking and swallowing "wrong"
« Reply #5 on: October 18, 2010, 03:09:47 pm »
The numbness on the affected side of your face will gradually improve. In the meantime, eat slowly, take small bites, chew thoroughly and no talking while you're eating—that's how the "inhaling" happens.

Also, make a conscious effort to chew-on and work the numb side of your face as a therapeutic exercise to bring those nerves back to life as well as giving the teeth on your good side a needed break from doing all the work. Above all, always take your time and never rush the food down.

5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Tod

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Re: Frequent choking and swallowing "wrong"
« Reply #6 on: October 18, 2010, 06:00:05 pm »
I also notice when I have this problem I am often talking and so inhale the food.  The time I almost choked I was talking to friends and as I finished my sentence I took a bite and inhaled it.  I need to take smaller bites, and concentrate. 

Amy,

You just can't talk and eat with these problems. I make sure people I am eating with know I have limits and that I will take a while to eat. It really is important to go slowly and eat with intention. Really practice at being aware.

It is also important to make sure you know how to self-Heimlich.

Good luck to you, but practice patience.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Lizard

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Re: Frequent choking and swallowing "wrong"
« Reply #7 on: October 19, 2010, 08:11:57 am »
I feel like my grandmother repremanding my grandfather at the dinner table, but you need to slow down and take smaller bites. 
Hopefully the swallow study gives you some options.

Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Kaybo

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Re: Frequent choking and swallowing "wrong"
« Reply #8 on: October 19, 2010, 02:41:49 pm »
Amy~
I definitely had these problems - I am completely paralyzed on the right side & have no feeling whatsoever over there.  I used to get choked ALL the time.  However, I guess with time, I have learned and adjusted to this problem because I VERY RARELY have choking spells now...when I do, I am usually very tired.  Also, I know that this sounds crazy, but I had my thyroid removed (I was having trouble and have a family history) and that seems to be the single most influential factor in my decrease in choking!

K   ;D

 
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Doc B.

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Re: Frequent choking and swallowing "wrong"
« Reply #9 on: October 19, 2010, 04:01:52 pm »
Amy,

I have the same problem. I was enjoying lunch with a client one day and had an "incident" I call them. Thanks to an alert employee that knew how to render the proper assistance a crisis was averted. You probably already know this but the best thing you and I can do is be very careful how and what we eat...and eat slowly. Rice is an absolute no no for me. I can't control where it ends up...I've choked on it and (laughing while I type this) had it blow out of my nose! Nowadays, I'm always the last to leave the dinner table, my ever expanding waistline is proof of that.

I've also noticed if I speak for extended periods, my throat seems to close up, starting me coughing uncontrollably...that's no fun either!

Take Care!
  ;)
Doc
Jul 2009: Left Translab to debulk a 5cm x 5cm AN. Jan 2010: CyberKnife Radio Surgery to combat remaining AN; approximately 3cm.  MRI Jan 12: Good progress. Last MRI Jan 13: All Good!

“Shake off the BooHoo and get with the program!"

 


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