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NPC Tongue Paralysis

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

Hello everybody!! 

I was just wondering if anyone has had tongue paralisys post NPC treatment?  And if yes, is there anything that can be done?

I am almost 5 years post NPC treatment and last February the left side of my tongue paralyzed and now it is the right side.  Also have vocal cord paralysis (mostly left sided), dry mouth, thick saliva, trismus, dammage to neck muscles, you know, the usual ...

I can only drink liquids and it takes me a long time.  I'm trying to avoid the feeding tube because I had it when going through treatments and had a very hard time with it.  Most Doctors here (in Canada) are good to say that everything is radiation related but don't really do anything about it...

So I was wondering if you guys could help me with your experiences... If you have suggestions...                                                         Thank you all Smile

sportsman
Posts: 98
Joined: Feb 2010

I practically have all these same symptoms now after almost five years post treatment. My doctor always states to me is that radiation is the gift that keeps on giving. I was not told this when I received radiation for my cancer but I understand this is probably the worst radiation anyone could have. My cancer has just returned and without a very radical operation it will be terminal. The paralysis with my tongue seemed to start about a year or so ago and has got worse in time. The radiation burned up my thyroid, my saliva glands has ruined many of my teeth and etc.. Fortunately I no longer have a feeding tube as my was removed about four months after treatment ended. Now I understand without it after this new cancer continues to grow that I will not be able to swallow and basically starve to death. Not much of a way to go is it. I pray that things will get better for you my friend.

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

I'm really sorry to hear about what you are going through and hope and pray that things will get better for you.

Yes the gift that keeps on giving indeed, one of my doctors said the same thing...  Never did the docs tell me about tongue paralysis as a radiation side effect but then again they did not tell me much.  Also, was wondering if the tongue paralysis was a radiation side effect cause no one seems to have brought it up.

Just wondering how did you manage with the paralyzed tongue to eat/drink?  Did the docs do anything about it?  Are they going to put back the tube?How did you find out about you cancer returning?  If you are not confortable with the questions then please don't answer.  I ask because I am curious and often wonder if the protocol in the USA is the same as in Canada.

My thoughts are with you Sportsman. Big hug,

 

Paula

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Sorry I can not help with your questions.  I'm only 1 year out from treatments base of tongue w/ one lymph node.  Your post however was enlightening.  That's that first time I have ever heard of tongue paralysis..

 

All the same...whispered a prayer for sportsmen and you that you can find soem good happening soon.

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

Thanks Tim.  I think it's a rare side effect.  I hope things go well for you.  It a long bumpy road ahead, some bumps bigger than others!!

I wish you all the best.  Big hug!

Paula

sportsman
Posts: 98
Joined: Feb 2010

Paula these doctors seem to tell you very little about the horrible side effects from radiation. I went into throat cancer blind and scared and did not check out treatment and treatment options enough before surgery, radiation and chemo.  I have been a student for this cancer for almost six years now and have learned many things I wish I would have known when I was first diagnosed. I did have my PEG taken out after about six months and through much agony trained my throat muscles to swallow again. There is no joy whatsover in eating anymore and I only eat to survive. It has ruined any social life I had in regards to going out with friends or on trips etc..  All my food has to be specially prepared. I have had my esophagus dilated I think six times now. During my last dilation the doctor saw some suspicious tissue while doing the dilation. She did a biopsy on the tissue and it was cancerous. I have had a CT and PET scan now confirming this. I never try to scare anyone facing this but I never sugar coat anything as well. I am presently under Hospice care and I am deemed terminal. I was only offered a horrific operation which would have basically disfigured me. This would have including removing my voice box and rebuilding my throat with tissue from othe parts of my body. They then only gave me a thirty per cent chance to live.

Me being a person who does a lot of research decided to research more on this. I am now being told by a cancer treatment teaching hospital here in North Carolina that I am a candidate for Transoral Laser Micro Surgery. This is a less invasive operation and will give me another chance at living. I will be meeting with the surgeon who performs this operation on January 23. I will make my decision then as to what I desire to do. Always and I say absolutely always get all the information you can before pursuing treatment for this cancer. There is numerous options out there. Hope this information helps you.

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

First let me tell you that I am really sorry to hear about the situation that you are in and truly hope that you get better really soon!!

I definitely agree with you and also think that the doctors do not tell you enough about the side effects nor inform you about what to do in order to try and prevent these side effects (or delay them).  When it comes to do the treatment it self, no problem but don't go back to see them if you have side effects.  At first back in February, I was sent around from Dr to Dr.  I was never followed by one specific Dr.  I would try to make appointments with them and they would not call me back.  I truly felt, with some of them, that I was a nuisance in their daily routine!

Now, I feel like you.  No joy in eating, no social outings (restaurants, cafés, trips, ...).  At the moment, I prefer to hang out by myself and sometimes that is not too good.   I still hope that the doctors will find a way to make my situation better because I don't know if my patience will run out (especially if things get worse).  I admire the strength and courage of everyone on this site and it helps me to move forward and to have hope that one day things will get better.

Sportsman, when you say that you trained your throat muscles to swallow again, what did you do?  Exercises, Vitalstim, or other?

I am doing exercises but always wonder if there is something else out there.

Thanks for sharing your story and I will keep you in my thoughts. 
Get better soon.  Big hug!!

Paula

 

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

There is a member on here named HONDO (Tim)...

I can't remember if he had paralysis, but I know he is out there as for years of recovery from NPC. I do know he has a lot of problems with not being able to open his mouth very far, that leading to some dental issues.

More than likely he'll respond if he sees your thread..., you might put NPC in the title to draw more attention to that.

Like Tim, I too was different...STGIII SCC Tonsils and a lymphnode.. going on four years post Tx, so you are a little a head of me..super congrats on that.

Best ~ John

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

Thanks!I was diagnosed NPC with one lymphnode.  Right after I finished my treatment, I found another sub-clavical lyphmode (thank God cause the docs had missed it) and had to go redo the treatment all over again (different chemo and more radiation but different location).  Looking back, I think I did relatively ok through both treatments even though it was very hard (well you know!) and came out of it, I thought, not so bad.  Bust since Feb 2012 things have gotten a lot worst in terms of side effects and I am having a hard time dealing with the tongue paralysis... So I wanted to see if any one had been in this situation.

Congrats on your 4 years and I wish you many many more!! Big hug!

Paula

corleone's picture
corleone
Posts: 156
Joined: Jul 2012

Hi Paula,

I was wondering where (in Canada) you have been treated for NPC. I have the same beast (please check my profile for details regarding timelines and treatment, if interested) and have been treated at PMH in Toronto. I am concerned that they missed the subclavicular node during your clinical exam, which is scary. In my case, so far so good (you know, sort of), but I am only 1.5 months post last chemo.

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

I looked you up.  By the way, love your hungry bird photo cause that's how I look sometimes!

I was treated in Montreal at RVH and GH.  The thing is the doctors were saying that my cancer had come back (1 month after I had finish the treatment!) because they did not want to admit it was an error from their part.  But the problem was that the area targeted by the radiation did not go as low as it should have... 

I remember when I went back to let them know about that new lymphnode they were like: no, impossible, 99% chance that it's nothing, can't be,... but would you like for us to do a biopsy to put your mind at rest?  Hell yes I would!!  And then when they saw it was positive for cancer they blamed it on my cancer coming back!!! 

And you, how are you doing now?  Are you still using the feeding tube and how is that going?  How were the doctors at PMH? (because I thought about going there for my 2nd treatment)

Big hug,

Paula

 

corleone's picture
corleone
Posts: 156
Joined: Jul 2012

I am 5 months post rad and 1.5 month post last chemo, and I doing quite well! I learned to always refer to the grueling time during and shortly post radiation, as opposed to the pre-treatment era, when I didn’t have any health issues. Taste almost back (except for sour), saliva not yet (~10%), I am eating “normal” and haven’t been using the G tube for the last 3 months! By the way, I got rid of the tube today (see my most recent post). Otherwise I had an endoscopy performed 2 weeks ago which show no abnormalities. I am waiting for the chest CT scan scheduled for Jan 18th (as I had previously some hot spots that need to be followed-up) and H&N MRI in March.

I am relatively new in Canada (7 years) so I can’t tell for sure which Hospital is better, but looks like PMH is among the best in the world. All the medical personnel looked very knowledgeable and very friendly (well, with some time constraints, understandable) but there is no way for me to do any objective comparison with Montreal Hospitals except perhaps, that those in Toronto might not have so many financial hurdles, you know what I mean.  Personally I would opt for Toronto (PMH, but not any other Hosp in Toronto), but this is strongly biased. In the end it comes to how well you get along with your doctors.

Liviu

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

Sounds like things are going well for you and I hope that they do for a very long time and congratulations on getting the tube out!!Smile  I hated the tube...

You are probably right about the financial hurdles.  I have now switched to another hospital, the Jewish, because I hear that they have better post cancer care.  So I will see what they can do about the tongue paralysis and if they can't do anything I will try outside Qc.  I've been a bit through the posts and did not really see a lot of info about tongue paralysis post radiation so I don't know!!  Is it because it's a rare side effect? 

Well best luck with it all.  You seem to be off to a good start.

Take care, big hug,

 

Paula

corleone's picture
corleone
Posts: 156
Joined: Jul 2012

Hi Paula,

After reading some article summaries, I concluded that the Bilateral hypoglossal nerve (that innervates the tongue) paralysis after irradiation therapy is actually a known but rare complication. Cancericidal doses of irradiation therapy to be the head and neck may be followed by paralysis of cranial nerves due to fibrosis of tissue about the nerves and infiltration of the nerves with fibrous tissue. The hypoglossal nerve is particularly prone to this delayed effect of irradiation therapy and cases are cited were there was bilateral hypoglossal paresis appearing 2-10 years after therapy.

Unfortunately it looks like there is no effective treatment (I wholeheartedly hope I am wrong), except maybe the Pentoxifylline with tocopherol (Vitamin E) to break up scar tissue. In case this last treatment is not acknowledged by the oncologist, you can present him/her with this article:

 

http://www.thegreenjournal.com/article/S0167-8140(12)00462-8/fulltext 

Wish you all the best!

 

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

Some places in the internet do say that there is no cure but I will keep looking.  I had never heard of the Pentoxifylline with tocopherol (Vitamin E) so I will look into that and will look into the article.  I will definitly print anything that is pertinent and bring it to the docs.  They  love me when I do that (not)!!I saw a new ENT at the Jewish hospital today. He said that he never saw a case like mine. Said that it is most likely the radiation but wants to rule out any other cause. I'm supposed to be doing a MRI of the nerves (hypoglossal canal) very soon. Then, depending on the outcome, they will send me to a neurologist (or not). Here we go again...

Thank you so much for your response!!!  It is very appreciated.  Keep me updated on your road ahead and best wishes to you too!!

Big, big hug Laughing

 

Paula

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

NPC the end of August....reading what has happened to you because of rads is very sobering....I felt from the beginning that I'd been lucky, since I didn't seem to suffer near as much as others during radiation.  Your story just keeps me in touch that things are never really over....even 4 or 5 years out....I don't have any advice, or experience of course....but if there is a place to get it, it's here....

p

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

My advice to those that just came out of treatment is to daily exercise the muscles of your neck (swallowing muscles), face, tongue and so on... This to keep things from hardening and changing.  If I had known, if Drs had told me, I would have started earlier on in order to try and prevent some of the dammage from the radiation.

I got the Therabite to help open the mouth more and it does help to a certain extent but the Dr should have prescribed it to me way before.  By the time they spoke to me about it, some dammage had already been done...

Here, I have a feeling that Drs are only interested in treating the cause but they neglect to talk about what measures can be taken to prevent certain things from happening post radiation.

Also in the States you have Vitalstim and that is not available in Canada.  Don't know if any of you have tried it for swallowing problems.

P, I wish you a long and successful road ahead!!  Big hug!

 

Paula

wmolivertx's picture
wmolivertx
Posts: 5
Joined: May 2013

I went through radiation in 2000 and did not have the vocal cord problem until sometime in 2008 and then the paralyzed tongue in 2009.  As you all mentioned, the doctors at MD Anderson blamed it on the radiation treatments.  I guess I am a bit lucky in the fact that I can still eat, although rather slowly and with lots of clearing food off of the tongue.  My worst problem is with the speech difficutlties.  I lost my sales job and now find day to day communication a lot tougher.  I am considering acupunture although the doctors tell me it will do no good but what the hey.  I'm beginging to wonder if it can also affect the optical nerve?

Good luck to all.

wmolivertx's picture
wmolivertx
Posts: 5
Joined: May 2013

I have had a procedure that injected a botox like substance into the vocal cord to move it closer to the functioning cord and it seemed to help for at least 12-18 month.  I also learned that a friends wife had the cord moved by surgery ckoser to the working cord and it seemed to help with the hoarseness and swallowing issues.  According to them, the surgery was fairly simple and was done through a small incision in the neck.

wmolivertx's picture
wmolivertx
Posts: 5
Joined: May 2013

I have had a procedure that injected a botox like substance into the vocal cord to move it closer to the functioning cord and it seemed to help for at least 12-18 month.  I also learned that a friends wife had the cord moved by surgery ckoser to the working cord and it seemed to help with the hoarseness and swallowing issues.  According to them, the surgery was fairly simple and was done through a small incision in the neck.

wmolivertx's picture
wmolivertx
Posts: 5
Joined: May 2013

I, like you were never informed by my MD Anderson doctors this might occur.  My tumor was on my left tonsil so most damage to left vocal cord and left side of tongue.  I have found it easier to eat solid foods by cutting them up in very small pieces.  For breakfast I use Cheerios, milk, bananas, protein powder, liquid vitamins, and any other fruit I may want to add.  I then blend the hell out of it and drink away.

on another note, I have been receiving injections into my left vocal cord that helps with my swallowing.  More times than not prior to injections food would invariably get caught which induced a round of coughing.

Hope some of this helps and good luck.

 

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

 

About six years after me second treatment of radiation for NPC I started to have problems speaking. It was not long after that I could not swallow very well, then lost the ability to swallow anything and had to get a PEG tube. None of my doctor at MDA or here in Lafayette said anything about late side effects of Radiation treatment. What happened is the radiation damaged the nerve that works the tongue and voice there is no reversion the damage. I have been like this for just about two years now and it does not bother me anymore just another part of my life that I live every day. I am still working full time with some very wonderful people who accept me as I am, God has been so good. I use to preach but can no longer speak so I now write my sermons and post them on my web-site I call it Restoring Gods Truth. I am still here no sign of anymore cancer just trying to live as normal a life I can everyday with God’s help.

 

 

Hondo

 

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