death by choking?

[lsterling]

Hello Anyone,

I am new to the ANA Support Group but I had my surgery 17 years ago. One of the questions I asked my surgeon at the time of my surgery was "How long will I live?" "Will my life be cut short because of the tumor or surgery? How long can I expect to live?" His answer was that I could expect to have a relatively long, quality life. I asked, "How do Acoustic Neuroma patients die if they live this long life?" He said by choking. Recently, I have been having trouble swallowing and bouts of choking, and I am a little anxious about this. Is there anything I can do about this? Does anyone have any numbers? Should I be concerned?
Lynn in Seattle,

[CHD63]

Lynn .....

First of all, welcome to this group of caring, supportive AN patients.  The vast majority of us are not medically trained but many of us have done extensive research because of having acoustic neuromas.

I have no idea why a doctor would tell a patient he/she would die by choking because of having had an acoustic neuroma surgically removed.  This is total news to me.

Several questions come to mind ..... did you have swallowing issues pre-surgery 17 years ago or immediately post-op?  Have you had an MRI with contrast recently?  What were your symptoms initially?  Other than the swallowing issues recently, what other post-surgical after effects have you had (e.g. hearing loss, balance issues, facial involvement, etc.)?  When did you last see a doctor about any of this?

It would be difficult to try to answer your questions without some additional information, but I cannot figure out why the doctor said what he did based on what you have told us.

Very curious .....

Clarice

[sgerrard]

I have not heard of this either. There are cases of a tumor that has not been removed causing problems with swallowing, and of the surgery itself in unusual cases causing a problem right after surgery. I have never heard of someone developing choking problems 17 years after surgery, let alone dying of it.

Whatever the cause may be, if you are having swallowing or choking problems, by all means see a doctor about it. But there is no sword of Damocles hanging over the head of an AN surgery patient.

Steve

[TP]

Lynn, welcome to the forum. I do have a question as I have some coughing/choking issues when I eat. Do you have facial paralysis? I do and I have trouble with not having enough saliva when I am eating. I have found that if I don't drink enough while eating I will have a tendency to cough and sometimes choke. Fortunately never where I need help but I do have issues eating and have learned to live with that little problem.

[epodjn]

I have a choking/swallowing problem that is unrelated to my AN but was made worse for a while after surgery. It corrected itself several months after surgery. The initial problem is that I tissue that grows in my throat and causes food to get caught. I have to have a procedure done every few years to clear out the tissue so I can swallow correctly. Right after surgery it was worse because I also had some paralysis of my throat but now I'm just fine. Might want to check with a doctor and see if you have developed that type of problem.

[lsterling]

Hi Clarice,

Thank you for your reply. Having thought about this a little more I wondered if this was something inappropriate to bring up since you have several members just beginning their AN experience. I apologize to anyone whom I may have caused additional anxiety and fear over their own issues.

Let me start at the beginning; Seventeen years ago this month I discovered I had an AN. What tipped it off was when I picked up a ringing phone and put it to my left ear. I could not hear a thing until I pulled the phone away from my ear. Thus began a series of Dr. appts. and tests. Finally, an MRI revealed a 3cm tumor on the left side. I had surgery 2 weeks later. Post-Op I lost complete hearing in my left ear, partial paralysis on left side of face(no tearing in left eye, no muscle movement in left brow or forehead, crooked smile) although the first year post-op paralysis improved quite a bit.

My swallowing issues are all post-op and have been gradually increasing. I don't choke every time I eat something but possible every day or every other day I have a choking spell when I eat or drink. I went to the doctor last spring with a sore throat that would not go away, no other symptoms. I mentioned my choking issues. He could not find anything wrong with my throat but advised an MRI since I had not had one for several years. When the results came back we looked it over and he explained that he believed I had a reoccurring tumor! He showed me the white spot- very small - he estimated 3 mm. Further consultation was scheduled. The head of the department pulled pre and post-op records from 1992 and a meeting was scheduled. At the appt. the Department Head Dr. said in his opinion, there was no reoccurring tumor and that what he was seeing was residual post-op stuff and not a re-occurrence. I looked carefully and did not see the previous white spot that the ENT had pointed out. So that was the end of it. No explanation of difficulty swallowing and throat issues. I always remembered what the Dr. had told me about choking. He said I could minimize the issues by being careful not to drink or eat extremely hot or cold food. I am afraid over the years I have not been very diligent about this. I am 58; not young, but definitely not ready to die. I was hoping maybe another AN person might have some helpful suggestions on how to deal with this.

I am an elementary teacher but this year I do not have a contract and therefore no medical insurance. Seventeen years ago there was no such website. Support groups were minimal to say the least. What a blessing to locate this site and connect with people who are so supportive and knowledgeable even to strangers like me. Thank  you Clarice for your reply and to others who replied. Your kindness is very encouraging.
Lynn

[Cheryl R]

I do not think it is inappropiate to bring up your choking issue.       It is not usual but still of concern to you and seeing if there is someone else with this also is  very understandable.              I am wondering if you had a swallowing study done with a speech pathologist would be of help.       It is done in an x ray dept and might show of what could be the problem.         There is small chance that this might not even be related to the AN.                  I am now a retired nurse and anyone with continuing choking problems ususally had this done at the hospital where I worked.   
It is good to know that you have had a MRI and no large tumor back again.      There can be some scar tissue which does show up in MRIs.                Is there any problem with certain types of food that cause the problem?          Some with a more severe problem may end up with pureed foods and thickened liquids.     These would probably not be needed for your problem but maybe there could be some help to decrease the problem.        There is a chin tuck used with some swallowing issues which might be of help on a "choking" day.                 Good luck with this!                         Cheryl R

[Cheryl R]

More thoughts on this.       Do you have a history of acid reflux and heart burn?    That can sometimes be a cause of coughing.   Any chronic sinus or asthma?            An enlarged thyroid?           
That still amazes me that that Dr even came up with the choking causing death of an ANer.              Cheryl R                           

[CHD63]

Hi Lynn .....

As Cheryl said, no need to apologize for bringing up any issue.  Most of us try to keep a very positive attitude on this forum and new people should be able to see that.

Choking following AN removal certainly is not the "norm" from what I can gather.  It sounds to me like there could be several possible explanations for your choking problems ..... all of which should be followed by a medical doctor.  Like Cheryl, I am wondering if your choking is totally unrelated to your AN.  Swallowing studies certainly sound like they would be helpful in determining a cause.  Do you still have numbness in your mouth and/or throat?  If you have acid reflux, you could also have a narrowing of your esophagus, which can cause swallowing/choking problems.

If your current ENT is unwilling to pursue these problems, I would vote for finding another physician who will.  I know insurance problems can be an issue, but you need some peace of mind and relief from the fear of these symptoms.  If this is a treatable problem, there is no need to endure this fear of choking.

Let us know how you are doing and please do not give up and accept this as it is just yet.

Thoughts and prayers.

Clarice

[ppearl214]

Hi Lynn and welcome.  Good to have you here and hoping you find answers you seek. As I can see, many chiming in with good answers and I have to agree.... I have not heard of this with affiliation to AN's (as your dr first noted to you).

CherylR  and Clarice have both noted good thoughts on the topic (as well as everyone else). Could be a multitude of things and your dr is the best to consult (maybe your PCP, to start) to see if you all can figure out why.  In addendum to what Cheryl has noted, I've also heard anything from sleep apnea to Chiari 1 malformation (which I have) can also do this.

Please keep us updated on what is noted.

Again, welcome!
Phyl

[jazzfunkanne]

i went through a stage of i would wake up from my sleep and feel as if i was  choking, my ent gave me a nasel spray as my sinus where blocked and it seemed too do the trick , it scares me a little after reading this.

[HeadCase2]

Hello lsterling,
  Your doctor may have mentioned choking death as being related to AN since it's mentioned in the medical literature, from its more primitive past.  It's in House's text on Acoustic Neuroma, in the historical review section.  Doctors have known about AN longer than they have had treatments for it.  I believe it was Dr. Cushing who first attempted to surgically remove AN tumors, but only when the tumor had gotten so large that it was compromising the ability to swallow effectively. All brain surgery at that time usually had grime outcomes, due to infection, etc.   Thankfully, with the development of effective treatments for AN, we can relegate choking death due to AN to the annuls of history.  I'm surprised that the doctor mentioned it.  He should have known that it would cause undo concern. 
Regards,
  Rob

[Sue]

As an AN patient who has facial numbness, tinnitus, and mostly SSD, I already know how I'm going to die.  I'm going to be irritated to death! 

On a more serious note, I think you've gotten great advice and I'm sorry your doctor suggested something to you that has caused you some low level of stress.  My mother-in-law had swallowing issues after surgery and she had a therapist that told her to hold her head down, her chin tucked in, if you can picture that...when she swallowed something.  It kind of helps to open up the esophagus.  My aunt also has weak muscles in her throat, and she uses that technique when she feels she is having trouble. 

Sue in Vancouver USA

[Jim Scott]

Hi, Lynn ~

I want to add my welcome and also my opinion that I believe your doctor made a rather dubious comment based on antiquated information - as Rob ('Headcase') pointed out.   AN patients eventually dying of choking is mostly a fallacy based on the relatively rare cases of AN involvement of the 9th and 10th cranial nerves that control swallowing.  I would echo Phyl's ('ppearl214') suggestion that if you're experiencing swallowing/choking problems, definitely contact your PCP to find the real cause and a solution. 

I'm an AN patient who underwent Retrosigmoid surgery then FSR for a 4.5 cm AN back in 2006, when I was a lad of 63.  Everything went well; the tumor was 'debulked', the radiation applied and I came through both procedures in good shape with minimal complications (none at all from the radiation).  My very experienced neurosurgeon (30+ years of AN removal surgeries on his resume) never even mentioned swallowing issues except to ask me in a surgical follow-up visit if I had any.  The answer was no.  When I die I seriously doubt it will be from choking because I once had the misfortune to develop an acoustic neuroma on the sheath of a cranial nerve that was surgically re-sectioned and radiated.  I don't pretend to be a doctor (or a soothsayer) but I believe the same goes for you, Lynn.  Please don't allow a doctor's casual comment based on outdated information to overly concern you.   

Jim

[loose screws (tightened)]

I think your doctor may have a very insensitive sense of humor. Ironically I find it funny that there's a practicing physician that's actually dumb enough to make a comment like that. My advice. Get another doctor.
Mike