ANA Discussion Forum
General Category => AN Issues => Topic started by: robynabc on August 03, 2008, 12:52:16 am
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Okay,
Some of you are familiar with Eric and his paralized vocal cord and swallowing problem. The doctors have told us that it could take up to a year for this nerve to get better. This has come and gone. Eric still coughs when eating sometimes or sometimes just for no reason. He has a sort of itchy feeling. That sounds like the nerve, right? When Eric had the surgery they tested the nerve and they said that it was responding. So they said they don't believe that it was severed. We have always wondered if the fact that Eric got a bad case of thrush after the surgery had anything to do with this. (thrush was caused by his asthma meds and heavy steroids)We read that thrush can cause a syndrome with the same symptoms as the nerve issue.
Here is my problem. I kept telling Eric that it would probably get better. The docs said this complication has never happened before to them. It is a rare complication. That makes me wonder about what they know about it. And now I don't know if I should keep telling Eric that it will probably get better. Living with this forever is sort of scary to me. Even though I know he will be fine. We still feel lucky. I know he is. I just don't know how we should think about this. Is it time to believe that this may not get much better. Has anyone else here had this? How long did it take to get better? Or are there people where it never got better? I can't remember the number of the nerve involved. He has his voice even without the vocal cord. But the coughing with his asthma is a bummer. The bad coughing attacks are the worst. They only happen occasionally. Is there any specialists in this nerve area that would know more than our docs on this complication? Any help is so appreciated.
Robyn
PS. Oh and this is interesting. Eric had his wisdom teeth out two weeks ago and for about 5 days the whole coughing thing went away. I think it was because he was on soft foods.
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Firstly, I understand your worries
Lets talk a little about nerves
I lost 1/2 the "touch/taste" sensation on my tongue, post surgery
even though that nerve was only close to the surgery
- ie just local bruising and swelling post op was enough to knock it down
6 months later the dead zone was down to 1/3
a year later - a coin size with no feeling
Now 3 yrs later the dead spot is about the size of a pin head
I guess my point is these things really do take an amazing
amount of time to settle down
So I think there are two possible action points here
One, is there any therapy that will help progress the healing process ?
if your docs dont know then
Two, is it worth to get a second opinion and a steer on the therapy option ?
In terms of recovery type therapy - you really do need the services
of someone who has done this before - home exercises once a week
to help things along ?
Overall yes it will take time
but there might be a way of easing that forward a bit
Good Luck
and
Best Regards
Tony
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I don't have experience with the vocal/swallowing nerves however it's been 4 years since my surgery and I still have recovery. In fact just recently I noticed I can lay on my AN side and it feels normal.
I would talk to a facial nerve specialist to get the full scoop. I saw Todd Henkelmann in Pittsburgh, UPMC. He has done a lot of research in facial nerves. He told me that he saw a woman who had facial nerve recovery after 15 years!!!
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Has he ever been evaluated lately by a speech pathologist with a video swallowing study to see how it is going? They might have some ideas on how to improve it. Has he ever been told to do the chin-tuck when he swallows food. My experience has been to be more around stroke patients who cough with eating but some of it may be similar. Many of them have to be on a pureed diet until it does improve for them.
It is hard to know about the time needed for healing as so many here do see improvement long after you think there would be.
Cheryl R
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Robyn:
I have no real personal experience with swallowing/coughing issues, post-op, but I will echo Tony's comment that nerve healing can take far longer than a year. I have a small AN-related 'numb' spot on my tongue. While it has grown a bit smaller and less noticeable in two years, it remains very much there. On a recent visit, my neurosurgeon said that until my AN shrinks down even further, I may experience this sensation. Fortunately, it is not a real problem and obviously less annoying than Eric's issues.
My point being that doctors don't have all the answers all the time. I believe the one-year time-frame Eric was given is a bit optimistic. I also think that some sort of therapy, as suggested by both Cheryl and Tony (before me in this thread) might be beneficial to hastening the lessening of Eric's difficulties with swallowing.
Most AN patients have to deal with some level of discomfort long after surgery or radiation. That being the case, I would face the reality that Eric still has swallowing issues and tell your son the obvious - that the one-year time-frame was obviously wrong. Then I would encourage him to be pro-active in his healing and attempt to find and implement some sort of 'swallowing therapy'. I would take the attitude that 'it doesn't have to be this way'. Counting your blessings, as you have, is also helpful to maintain a positive attitude.
None of this may be useful to Eric but I offer it with all compassion and good will. :)
Jim
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Thank you everyone for your help.
One thing is the swallowing isn't too much of an issue it is the coughing and irritation. He can swallow but he has numbness there so if something is stuck he doesn't feel it and that makes him cough bad sometimes. Then he gets irritation from the nerve. Like an itchy thing going on. He has to have water with him at all times. Don't get me wrong it isn't an all the time thing but it is daily some days worse than others. But he is living with it pretty good.
I so appreciate your thoughts. I don't know why I didn't get more proactive with this sooner. I guess I was waiting for that one year thing. I am usually very proactive about this stuff. I talked to Eric about what you guys said and he would love to do physical therapy. Do you think I should look for a physical therapist or call a bunch of ENTs. I am not very confident that the ENTS will know what to do. The last two we have talked to have said just wait. They did say this is the longest nerve of them all and it goes down into the chest then back up to the throat so they said it takes a long time for the healing of it. But that being said I don't know why they had this year time frame.
One of these days I will have to get Eric on here to say HI. Just know I relay what you guys say to him. And he relays back.
I am so proud of how he handles this stuff. You would be surprised how little he complains.
Sending Sunshine.
Robyn
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Hello. I am still for having a speech pathologist evaulate him. They may have seen others with something similar but caused by a different problem. Any dr should be able to know of one. The study is done at a radiology dept. They will know hints of what could help him have less coughing. I am not exactly sure what a physical therapist could do to help this.
I am a retired nurse and saw many of our small hospital patients get checked out if they had much problem with coughing with eating.
Cheryl R
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I don't have experience with the vocal/swallowing nerves however it's been 4 years since my surgery and I still have recovery. In fact just recently I noticed I can lay on my AN side and it feels normal.
I would talk to a facial nerve specialist to get the full scoop. I saw Todd Henkelmann in Pittsburgh, UPMC. He has done a lot of research in facial nerves. He told me that he saw a woman who had facial nerve recovery after 15 years!!!
I think I'm on the 15 year plan ... I can sort of smile , but my lower lip is still frozen .... however I still get - pins and needles and "zaps" now than then ... there is still something going on !!
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just my two cents here, my dr. told me that after i had the 7-12 jump that the nerves only grow 1 cm a month,not sure if thats helpful or not but thats what i heard,out of my good ear,ha,ha.
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At the risk of sounding like a quack, and FWIW, raw garlic -- eaten in large amounts -- can possibly help regenerate nerve endings. Many years ago, I lost all feeling on the inside of one of my legs below the knee due to an accident. I had no feeling -- not even pins and needles -- in that area for six months. After reading medical research in an AMA Journal that stated that garlic raises the respiration rate of cells (therefore increasing oxygen in the cells), EVEN IF THEY HAVE NO BLOOD FLOW TO THEM, a bell went off in my head. I had heard before that oxygen regenerates nerve endings. So, I theorized, if I ate a bunch of raw garlic and increased the respiration rate (oxygen content of cells) throughout my body, possibly the damaged nerve endings in my leg would regrow and I would get some feeling back. I ate an entire raw bulb -- not one clove, but an entire bulb -- of raw garlic for 14 days (a very difficult task). After 3 or 4 days of doing this, I began to get sensations of pins and needles in my damaged leg for the first time in half a year. After 10 days, all feeling had returned to my leg. The loss of sensation (or any numbness) never returned.
Many years later, I had a numb sensation on top of one of my collar bones due to the shoulder strap of a heavy backpack bruising the nerve there. I remembered my garlic therapy and ate a bunch of raw garlic for a few days. The numbness went away. Mind you, this second example is of a condition that might have self-corrected anyway. But the leg injury was retractable for 6 months, with absolutely no sign of improvement until I ate the garlic.
In order to make the garlic more easy to eat -- after eating several cloves, the rest of the bulb tended to burn my mouth a bit going down -- I ate it with oily foods such as avocado. The garlic must be eaten raw, to get the full benefits of the volatile oils which seem to be the active ingredient. I also ate only a couple or 3 cloves in one sitting and spread the entire allotment out over the course of each entire day.
I have no idea if the garlic will help your son, especially after 1 year of having his condition. The brain and cranial nerves are very different from peripheral nerves. And I should say that I tried eating a bunch of raw garlic to improve the condition of my vestibular and hearing nerves after discovering I had an AN, and I can't say it helped. That said, I only ate about 4 or 5 cloves a day for the AN-related problems; I couldn't stomach eating an entire bulb. I think it's easier to do something extreme like that when you're younger.
I was hesitant to post this message because it's really such a radical idea, but since you said "any help is so appreciated," I thought it was my duty to tell you of my experience on the off chance that it might help your son. I hope it does.
Best wishes,
Tumbleweed
P.S. I'm not a medical professional, but a paralyzed vocal chord and swallowing difficulties sound more like it could be from a brainstem injury than from damage to cranial nerves, as the brainstem controls the ability to speak and swallow, among other higher functions.
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Hi,
Thanks for both of your posts. The fact that it may take 1 CM a month would make sense since this is the longest nerve according to the docs.
You know maybe we will try some garlic too.
This commment is making me think.
not a medical professional, but a paralyzed vocal chord and swallowing difficulties sound more like it could be from a brainstem injury than from damage to cranial nerves, as the brainstem controls the ability to speak and swallow, among other higher functions.
Eric's brainstem was really compressed. On the MRI the tumor really pressed and of course the docs said we didn't have a ton of time to get the thing out. So now I am wondering about brainstem injury. >:(
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Robyn,
Sorry for the late reply but I was out of the country lately and I am just catching up with all the posts on this board.
I had my second surgery on the same day as Eric so I feel compelled to answer! Vocal fold paralysis (paresis if incomplete) comes from cranial nerve X (10), another name for which is vagus nerve. Here is the website that I found very useful: http://www.voiceproblem.org/disorders/paresis/index.asp
20 years ago preservation of vagus nerve was under question because separation of the tumor from it was difficult. Vocal fold paralysis was not unusual after surgery. Now thankfully it is very uncommon and I am sorry that Eric has it. The neurosurgeons told me that separating the tumor from the vagus nerve now is generally not difficult. Brainstem injury is usually referred to the loss of the swallowing reflex which necessitates tube feeding and limb paralysis/ paresis. However, all the cranial nerves have their roots in the brainstem and the nerve can be injured at any point, including at the brainstem, so it can misfire as the result of AN surgery.
I also had severe brainstem compression and Xth cranial nerve involvement both times. In fact, I had mild coughing for the first 3 weeks after my second surgery followed by intermittent pain in my throat on the AN side and frequent itchy/ scratchy feeling. I drank a lot of water and had cough drops handy to lubricate the throat and keep myself from having coughing fits.I also avoided hard to chew foods with sharp angles that precipitated the coughing attacks and increased itchy/scratchy feeling. I am not into deep fried foods but I preferred my vegetables cooked and avoided raw salads. The first week after surgery I also felt the food getting stuck in my throat on the AN side so I simply avoided eating on that side. A few months after surgery I regained enough strength in my voice to yell at my teenager for not cleaning his room! He thought he was in seventh heaven but it only lasted for a few months! ;D
I agree with everybody's posts, you have been given wonderful advice. From my experience I would like to add that ENTs usually can determine degree of vocal fold paralysis/ paresis while speech language pathologists can evaluate/treat swallowing and voice function. I would look for voice/swallowing clinic in any big hospital in your area, especially the one that specializes at ear/eye. They can give Eric an evaluation (including the swallowing study) and refer him to an ENT who specializes in voice/swallowing disorders. It is an area of narrow specialization so if you go to any local ENT, you might not get any information because he/she does not deal with it on a daily basis.
Best of luck to both of you. Eric is very lucky to have you. Please, let us know how he is doing.
Eve
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I really feel for you. I was told that my affected nerves may grow back but they never did. I think its the luck of the draw.
Now nearly 20 years after my AN ( a large one ) was removed I still have numbness on the right side of my tongue, a lack of taste sensation and sometimes difficulty in swallowing especially when tired. I have got used to it now.
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Robyn~
Sorry for the late reply - I read this & thought that I didn't have it but after more thought, I'm wondering if I did - or at least to some degree. I don't know if it was "paralyzed" (probably not) but I did have a LOT of trouble and really just within the last year or two, don't anymore. I always described it as feeling like one side (AN side) didn't work right. I know that when you swallow, things just go down your throat, but it seemed "2 sided" to me. I had to always have something to drink by me, in case I got choked or that side of my throat dried out and brought on a coughing fit. I don't know if this is anything like your son's problems, but thought it worth mentioning. Now, I rarely have problems so I guess time does heal...
K
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Eve, that was a really great post. Very informative.
Best,
Tumbleweed
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Hi,
Thanks for all your posts on this. Yes, Eric has to have water with him at all times because of the coughing fits. Knowing that this is the 10th nerve helped alot. I always get confused on this. We are going to go to a therapist. Right now I am working on getting our insurance to pay for one that is not on our plan. The one we went to before was terrible. This is not going to be too good for him if he has to live with it forever. After reading a bit about the 10th nerve (and there is not much out there) I think the big problem is he is haveing spasms and that is where the choking thing is coming from. You guys gave us some great info.
Kaybo you had the same doc as Eric, if I remember right, Dr Jenkins. I am starting to realize this has something to do with the brainstem problem. And Dr. Jenkins told me he did not feel at any way comfortable with leaving any of the tumor. So, from what I read they can help him with learning how to maybe eat different. The last therapist was not very good and no one seems to know much about this. BUT, someone has to know something so I won't give up until I find them.
Thanks agian.
You guys are the best.
Robyn
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Robyn:
If Eric is having spasms, as you suspect, then valerian root extract might help him. Valerian root is an antispasmodic herb. Eric could try taking one dropperful (about 30-40 drops) of the liquid extract 3x/day and see if that helps. I've taken much larger doses than that to stop coughing fits when sick, and it works like a charm. But I'd be careful about giving Eric too much at once; I just don't know how safe it would be for him to take large doses for his specific condition. 30-40 drops at a time should be very safe.
The valerian root might make Eric sleepy, so he shouldn't drive or operate heavy machinery while taking it.
If it seems to help a little and he has no adverse reaction to the herb with the standard dose (30-40 drops, 3x/day), you could slowly and incrementally increase the dose to see if it helps even more. The goal is to quiet any nerve irritation and stop the spasms, and then slowly wean himself from the valerian root. It's not something he should be taking in large amounts for a very long period of time (because it'll make him dopey). But a week or two shouldn't hurt; in fact, it very well might help him.
Just a suggestion...
Best wishes,
Tumbleweed
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I am amazed to hear this is possible. Is it also possible with the hearing and balance nerves? Is there a book or reference anyone can recommend? Thanks, Linda Rene
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I am amazed to hear this is possible. Is it also possible with the hearing and balance nerves?
Unfortunately, I've found valerian root extract to be of minimal or no benefit when it comes to the hearing and balance nerves. It is extremely effective (at the right dose) with coughing fits, abdominal cramps and even insomnia (as it is also sedative in action). There are many herb books that have information on valerian root, as it is a popular herb. However, I've never read any reference to it being used to quell coughing. This I learned from personal experience many years ago. I had a dry, ticklish cough that went on for days, finally getting to the point where I was coughing every 5 to 10 seconds and couldn't sleep. I could feel the pleura in my chest starting to get painful with every cough and reasoned I had to stop coughing to avoid landing myself in the hospital. Knowing valerian root is an antispasmodic, I began dosing myself every hour on the hour until it stopped the coughing and put me to sleep.
Again, this is an approach that should be taken with extreme caution with Eric, as his other health issues make him potentially more vulnerable to side effects from large doses of herbs that affect the central nervous system (like valerian root does very short-term). I was otherwise healthy at the time (this was many years ago) and also very experienced with taking valerian root extract, so I knew what I was doing and could monitor my response.
But yeah, valerian root is an amazing herb for spasmodic conditions. :)
Best wishes,
Tumbleweed
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A month and a half after my AN removal, I had partial parlysis of my left vocal chord diagnosed by an ENT dr after a nasl scope exam....Its been about a year now and I still see an ENT dr for follow ups, last visit which was 6 weeks ago, redid the nasalscope and he said that I no longer have paralysis of my vocal chord but theres "guck" sitting there, maybe thats why my speech isnt all there as yet so he perscribed nexium, I have to go back next week, so I say theres still hope!
Takes time to heal.
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Thank you for your responses. We so appreciate them. I can't tell for sure but I think I have noticed a tiny bit of improvement lately in Eric. We were talking yesterday and he got a new job a few months ago. He is so happy to be working and making some money. They are really good about letting him keep water around and he hasn't had too many issues at work. He had a big coughing attack in one of his classes but I seem to notice his cough is better. But, it may just be I am not around him as much so don't see it. I asked him and he said he thought it was maybe a bit better. I think maybe because now that he is busier he isn't thinking about it as much? Not sure. But it gives us hope that maybe it is healing just a bit more. You know I looked at him today and really if that coughing thing clears up He will actually be better than before surgery. Except for the deaf ear, that really hasn't bothered him at all. He will sometimes lament about the cough but if it gets better he will be so great. We are blessed.
I want to thank you guys for your time in helping us.
Robyn