ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Suu on March 21, 2012, 06:56:42 pm
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Hello cyberbuddies extraordinaire :)
How long after having a 12/7 nerve graft should speech therapy be started?
Do I need a therapist/pathologist that has dealt with this sort of surgery or would any speech therapist do?
I saw the speech pathologist for the barium test due to my vocal cord stopping working after the surgery and was aspirating food and was put on a regimen of adding thickener to all fluids. She didn't tell me about moving my head to the right to get it down so it doesn't go into my lung (my specialist did though). My doctor tried to get me into the hospital speech therapist where I had the surgery but they say I live outside their area and will not take me as a client.
The pathologist that saw me near to where I live (and did the barium swallow test) only works 3 days a week and said she'd ring to make another appointment but hasn't and is not taking calls because she's too busy??!!
My tongue has already gone half numb and I found a pill, that I'd taken last night, under the left side this morning while cleaning my teeth! Yikes!
Please help.
Lovenhugs to all of you for being a big part of my family.
Suu xxoo
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Oh dear Suu,
I also have a vocal cord paralysis. I don't know the details of yours but the specialist in the country is Dr. Roger Crumley at UC Irvine south of LA. You need Vital Stim Therapy and not all speech therapists are trained in this. I signed up for the training but since I am retired I couldn't get certified to give the therapy for my father. Call around to all the Rehab Hospitals to track one down. I found that the regular hospitals have one on staff or maybe none and you have to wait until you are discharged. My father had the pre barium test to indicate that he needed this therapy. At the Rehab Hospital, there were 10 Speech Pathologists on Staff that were certified in Vital Stim Therapy. Scheduling was a breeze there and after three weeks of this therapy 3 hours a week as well as tongue strengthening exercises with a spoon, my father's post Barium Swallow results were so dramatic and that he was allowed to eat regular food, not the pureed food and the fake ice cream pudding cups that you have to order from Hormel. After four months he had to go back for more therapy to get back the tone so be prepared for follow up barium tests as the tone doesn't last. The speech pathologist will be your new best friend. Let me know how it goes. What was the nerve graft? Was this an anastomosis of the ansa hypoglossi to the recurrent laryngeal nerve? Sometimes it works and sometimes not. It took five years for some effect but I still have breathing problems so I cannot run or talk tonal languages such as Chinese.
Mei Mei
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Hi Mei Mei
My surgery was the 12/7 graft (called Hypoglossal-facial nerve interpositional-jump graft) from facial nerve to tongue.
The reason I've lost my vocal cord movement on the left is because the doctor 'stressed' it instead of moving it out of the way during the surgery.
I live in Australia.
The doctors and the first speech pathologist that I saw, both said they don't want to stimulate the vocal cord as they want to give it a chance to come back on its own which could take up to 12 months. The ENT is livid about the lack of follow-up and is going to phone tomorrow I hope.
I'm worried about being left for 6 weeks without followup or speech therapy of any sort. Another barium swallow test is to be done then but what am I supposed to be doing in the mean time about trying to speak and eat? I'm getting no answers back from the messages that my husband has left the speech pathologist.
I'll stay on the thickeners for fluids and will keep pureeing my food but I would love a goal to move toward.
Deep breaths, in out, in out, in out.. .. .. ..
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Well they are giving you the right information about the 12 month wait. That's what I did before I went out to California to have the anastomosis of the ansa hypoglossi to the recurrent laryngeal nerve. It reinnervated slightly after 5 years but I have a Bernoulli effect and get out of breath on any sentence, can no longer sing and cannot tolerate a stress test as the dyspnea is so bad.
You need them (the speech team) to write out a short term list of goals and go month by month. If they don't do that can you find someone else perhaps at a rehab hospital?
Mei Mei
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Thanks for the information Mei Mei.
The ENT rang today and so did the speech pathologist. The ENT has given me a list of 4 private pathology/therapy centres to phone for prices and the speech therapist is going to ring on Monday and make an appointment.
I get very out of breath also with trying to speak normally so I go back to whispering as it's less of a strain to do. This worries me because of the risk of pneumonia and isn't a good sign.
Can you speak normally when you take a deep breath or does is sound like you have a cold?
Do you have to do barium swallow tests often to make sure you aren't asperating food or liquids?
Are you on thickeners and if you are do you find that your food and drink are quite like a mud mix?
Thanks for being at the other end of my computer.
Suu xxoo
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MeiMei and Suujoy,
I too have vocal cord paralysis. I had a laryngoplasty/medialization. Basically, they insert a small prosthetic device that props up the paralyzed cord. Very easy surgery - local anesthesia, one night in the hospital for observation. Absolutely the most helpful thing I have tried. My throat was raspy for about a week, but a huge improvement after that.
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Hi Suujoy,
It can be very hard to find folks that really know what to do in this situation. It is even harder to know how long to be patient. While I was in ICU I saw a specialist several times, had a barium test, and given the advice to turn my head over my shoulder to eat and drink. Some winks after leaving, I had a few sessions with a speech therapist who really wanted to be cautious about the types of exercises to give me. Over that first year, I had three larynogplasties (injections) of the paralyzed vocal cord to plump it up and move it more to the center. While these helped, they never lasted as long as they generally should have and so my voice was very soft and strained. Just before seeing the ENT handling my vocal cord issues to schedule the same sort of surgery that Susan mentioned, i noticed significant changes that were very brief, but very real. We decided to forego the surgery and let the recovery continue unharrassed. It seems to have been the right decision for me. I still have limits, but in most indoor situations the normies can't tell.
If the nerve was not damaged only stressed/strained, I would think you would have good hope of eventual recovery. The key of course the word "eventual" and what you should/should not do during this time. Hopefully you will find a doc or therapist that has a good amount of experience in such things.
For months I was very particular about my diet. I really avoided things with crumbs or that were very dry. Breads, cookies, even pork and steak, I avoided or saturated and ate in very small bites. Even now I tend to avoid things with small particles or are very dry as they still irritate both the vocal cord and my throat (I still have impaired autonomic swallowing). However, once I got used to what I needed to do, it wasn't so bad. In fact, it was an overall improvement in my life to be intentional and thoughtful about my eating.
I wish you well. Life is good and I wish all my friends to be able to enjoy it the way I do.
-Tod
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Hi Suujoy,
My daughter (17 years old at the time) had a 2 phase resection surgery for her right AN tumor-5+cm in 2006. She had many complications including right vocal cord paralysis. She was in the hospital for 3 months including neuro-rehab. Approx 5 weeks after the initial surgery she had surgery on her vocal cord where they cut the muscle and moved the right cord to midline. This was to allow the left cord to move toward the midline and produce her voice and help with swallowing. At that point she was on a feeding tube and remained that way for some time. After the vocal cord surgery her VP shunt failed and she went back into surgery again. The tube that was used to intibate her knocked some stitches out of place from the vocal cord surgery. Her Head and Neck surgeon decided to wait before he scheduled another surgery and let her heal.
Before she left the hospital she had to have 4 shunt revisions on top of the resection surgeries and vocal cord surgery. Her immune system was shot and as a team decision her surgeons decided since she already had a feeding tube that she would go home...do her 28 FRS treatments and spend several months healing before attempting the vocal cord surgery repair. Her Head and Neck surgeon felt sure that she would be fine (without additional surgery) and regain her voice within 12 months and ability to swallow again. At the 4 month mark she was able to carefully swallow a few things and at 7 months her voice returned and was completely back before the 12 months.
In 2009 she had significant regrowth and had another resection surgery that left her with facial paralysis. The surgeons had been told to use a small intibation tube so as to do as little damage as possible to the vocal cord. She was unable to swallow for about 2 weeks after that surgery but has been able to eat just about anything since. Her voice is strong and clear! She had a cross-facial nerve and '5-7' nerve graft surgery last March 2011. She will have the gacillis muscle flap surgery this coming June. So far....So good!
I know...it is hard to be patient but time does heal.
Keeping you in my thoughts,
Michelle
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Hi All,
I really feel for all of you with vocal cord paralysis. I've had mine since 1988 with the error made on taking the wrong cervical disc. The following year I had surgery to reinnervate the cut nerve. I think I explained it above.
Around that time the video came out The Little Mermaid and I shared this experience with Tod. When the Witch took the Mermaid's voice tears ran down my face. I didn't share this with my Children. I was followed up by the ENT who saw Clinton with his voice problems while campaigning in Philadelphia. This doctor said that I would develop an enlarged heart due to the shortness of breath and my Chinese tones would be disabled as well as not being able to speak long sentences and sing. I just tell people that I am an American but actually I was an excellent speaker. Now I have to concentrate gliding each tone together.
Last week someone sent me a song that I love on Facebook and I tried to sing along but I couldn't sing and singing was also such a joy to me. Observe yourself and watch out for the emotional component of vocal cord paralysis.
Mei Mei :(
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Mei Mei,
Please ask an ENT about the procedures that Tod and I have had. I am a prosecutor. I am back trying cases after 2 years on the sidelines. I still don't sing in public (as I once did), but the procedure was SO EASY and so helpful to me. Keep me posted.
Susan
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I put an ice pack on my incision last night and woke up this morning with terrible pain and tenderness which got worse by the day. I coincidentally had a primary care two week follow up and he saw how swollen it was. Now my ear is hurting very much as is my neck and entire right side . I will see my surgeon on Monday morning. This is much more painful than day one of the surgery on March 16. I didn't know an ice pack could do this. I am taking antibiotics for a possible infection and now I can't find the bottle. Also took two Percocet and some Morphine.
I wrote to an ENT in Cincinnati when the doctor assigned to me for the 15 minute session noticed my breathing problem. Over the year he has been corresponding but I'm not sure what he wants to do. Had another strobe a few months before and the doc said I have the Bernoulli effect.
I didn't know that the ice would be so harmful to my incision.
I will follow up after I recover from this episode.
Mei Mei
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Hiya Tod - yep, I agree that it's making me wait to see if it will come back on its own and I watch how I drink all the thickened foods as I'm dreading the thought of any of it going into my lungs.
Michelle - Thankyou for telling me of your daughter's trials. I am so proud of you for being the mother of someone going though this with the great understanding that you have.
Mei Mei - I was told to put heat packs on my neck and ear. Cold is used for swelling and warm for pain.
I have a form of voice of a morning. It sound's like I've swallowed a frog but hubby could hear me in the other room a couple of days ago but it's gone again now. I reckon that's good news though ;D
Brewers7 - the ENT wants to wait. I don't think I could go for any more procedures just yet anyway. My brain is addled, I'm nervous, and I want a rest from seeing the operating room for the rest of this year if possible.
Tomorrow I finally see the speech pathologist again and have another barium swallow under x-ray. With my tongue now more than the half-numb I expected, I can't make words properly even at a whisper and that's something I'd love to start working on (how to form words) even if I'm told that I have to still have the thickened water/coffee and pureed foods.
Back tomorrow with an update.
Hugs to all,
Suu xxoo
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Suujoy, whatever happens tomorrow, you may wish to consider Beach Therapy. There can be very little that is more therapeutic than sitting in the warm sun for several hours each day, doing very little. You don't actually need the beach, but it adds ambiance.
In other words, don't forget to be good to yourself and let your body heal.
-Tod
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Sigh, Suujoy, I'm really with you and
Tod...that's the same place I go to when I meditate....the ocean.
Mei Mei
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Thanks Tod and Mei Mei - that's a great idea. I haven't had much of a break from being inside the house to being inside a hospital and started getting that way of not wanting to go outside.
Tomorrow I've asked hubby to take me to the lake near here. We'll take a thermos of tea and spend some quality quiet time there.
I had the barium swallow test under x-ray again and only some of the liquid went down the wrong way but I managed to bring it back up with a cough. They tried me on small stewed apple pieces but I couldn't get it between my teeth to chew it for some time but it finally went down and it took only 3 swallows to do it. Two better than last time.
The poor girl standing beside me with the pump (suction hose) nearly rushed in but I said I was ok.
I'm now on unthickened water, tea, and coffee!! WOW! This is a big step for me. My food doesn't have to be pureed but does need to be minced and wetted with something like gravy or custard. There's a lot more to choose from on the list and I'll write out a shopping list today. I don't want to lose any more weight this fast again. 8kg (18 pounds) in 6 weeks is too fast.
Julie the pathologist is going to ring me next Tuesday to make arrangements to give me speech therapy and teach me how to eat even though she said that she would normally wait until I had my voice back completely. Dr Eisenberg's letter got through to her so she is helping me a bit more thankfully.
I had my first meal tonight - minced turkey and vegetables. I took nearly 3/4 of an hour to eat half a bowlful but it tasted pretty darn good. I needed quite a few sips of water in between but all went well. ;D
There's only the one warning I was given - if my temp goes up and I feel sick I'm to get to the hospital as soon as I can.
Now the waiting game continues for my voice to return and for some normalcy (yet another new kind of normal I reckon) with eating.
Thanks for everyone helping me so far. You are in my thoughts daily.
Suu xxoo
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Suu, this is great news! I do believe the more you can make your body do that is closer to normal, the better your recovery can be. And sitting at the lake with your hubby and a thermos of tea is just what I mean!
Keep going,
-tod
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Hi Suujoy,
My daughter (17 years old at the time) had a 2 phase resection surgery for her right AN tumor-5+cm in 2006. She had many complications including right vocal cord paralysis. She was in the hospital for 3 months including neuro-rehab. Approx 5 weeks after the initial surgery she had surgery on her vocal cord where they cut the muscle and moved the right cord to midline. This was to allow the left cord to move toward the midline and produce her voice and help with swallowing. At that point she was on a feeding tube and remained that way for some time. After the vocal cord surgery her VP shunt failed and she went back into surgery again. The tube that was used to intibate her knocked some stitches out of place from the vocal cord surgery. Her Head and Neck surgeon decided to wait before he scheduled another surgery and let her heal.
Before she left the hospital she had to have 4 shunt revisions on top of the resection surgeries and vocal cord surgery. Her immune system was shot and as a team decision her surgeons decided since she already had a feeding tube that she would go home...do her 28 FRS treatments and spend several months healing before attempting the vocal cord surgery repair. Her Head and Neck surgeon felt sure that she would be fine (without additional surgery) and regain her voice within 12 months and ability to swallow again. At the 4 month mark she was able to carefully swallow a few things and at 7 months her voice returned and was completely back before the 12 months.
In 2009 she had significant regrowth and had another resection surgery that left her with facial paralysis. The surgeons had been told to use a small intibation tube so as to do as little damage as possible to the vocal cord. She was unable to swallow for about 2 weeks after that surgery but has been able to eat just about anything since. Her voice is strong and clear! She had a cross-facial nerve and '5-7' nerve graft surgery last March 2011. She will have the gacillis muscle flap surgery this coming June. So far....So good!
I know...it is hard to be patient but time does heal.
Keeping you in my thoughts,
Michelle
My heart goes out to your daughter and your family as well my prayers and thoughts will be with her I cannot imagine what your daughter is going through at such a young age...
Best Wishes,
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Hiya Tod - yep, I agree that it's making me wait to see if it will come back on its own and I watch how I drink all the thickened foods as I'm dreading the thought of any of it going into my lungs.
Michelle - Thankyou for telling me of your daughter's trials. I am so proud of you for being the mother of someone going though this with the great understanding that you have.
Mei Mei - I was told to put heat packs on my neck and ear. Cold is used for swelling and warm for pain.
I have a form of voice of a morning. It sound's like I've swallowed a frog but hubby could hear me in the other room a couple of days ago but it's gone again now. I reckon that's good news though ;D
Brewers7 - the ENT wants to wait. I don't think I could go for any more procedures just yet anyway. My brain is addled, I'm nervous, and I want a rest from seeing the operating room for the rest of this year if possible.
Tomorrow I finally see the speech pathologist again and have another barium swallow under x-ray. With my tongue now more than the half-numb I expected, I can't make words properly even at a whisper and that's something I'd love to start working on (how to form words) even if I'm told that I have to still have the thickened water/coffee and pureed foods.
Back tomorrow with an update.
Hugs to all,
Suu xxoo
My thoughts and prayers are with you I cannot even imagine what you have gone through.....
Best Wishes,,,
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I don't want to lose any more weight this fast again. 8kg (18 pounds) in 6 weeks is too fast.
Julie the pathologist is going to ring me next Tuesday to make arrangements to give me speech therapy and teach me how to eat even though she said that she would normally wait until I had my voice back completely. Dr Eisenberg's letter got through to her so she is helping me a bit more thankfully.
I had my first meal tonight - minced turkey and vegetables. I took nearly 3/4 of an hour to eat half a bowlful but it tasted pretty darn good. I needed quite a few sips of water in between but all went well. "
Suu - that sounds very familiar. I am a man and lost 24 pounds ( 184 to 160 pounds ) in the first six weeks after surgery. Fortunately I was able to start swallowing some foods or I was headed for some medical intervention. I also had to drink several times to get food down all the way, but that has improved to the point that I can swallow on my own probably 80% of the time - this is at almost 6 months post-op ( April 6 is exactly 6 months.)
As the swallowing has improved in the last 2 months, and my voice as well, I have a cough that comes from my throat after talking or swallowing. While it is annoying, it is not really a problem.
My surgeon's office feels it may be related to vagus nerve improvement, but have not seen a cough response before.
My voice has improved, but I cannot "raise " my voice. I can be heard and understood by someone in the same room, but not in another room. I do not yet sound like myself, but my speaking is improved. One point about improving over 6 months, it was not gradual, but rather quantum. I'd go a couple months with no change and then suddenly one day I spoke better. Then another several weeks before I suddenly moved forward again. I don't know if this is common or not. But improvement does happen.
Good luck
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LakeErie, I am little over two years post surgery. I went through three laryngoplasties (VC injections) to allow me something of a voice and the ability to swallow thin liquids. The improvements you note are very similar to what I went through,
The coughing is still present, although it is nowhere near as prevalent. In my case, the cough is a result of the loss of autonomic swallowing, peristaltic action of the small muscles in the throat. Any mucous, including the normal mucous that coats these passageways, just gets stuck and needs help. Dry foods I still struggle with and have to be careful. I drink a lot with meals.
However, things are so much better. In normal environments, at normal volume, my speech is normal, with some coughing. In louder environments, not so much. As you have probably noticed by now, your body tries to pitch your voice differently and with greater volume - regardless of your intent. I think also that SSD compounds this. Again though, I have significant improvement. I still can't sing more than a few a bars, and it seems I will never sing tenor again, but that's okay.
It is very difficult to be always be patient, but it seems to be what we need.
Best to all,
tod
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Tod - this is where we went to today. It's on the Central Coast of New South Wales, Australia -
(http://i12.photobucket.com/albums/a228/Joshua1/centralcoast.jpg)
It was a great tonic!
LakeErie - I'm the same. Every now and then I feel like I'm talking normally (with a croak) and can even feel air going down my throat a lot more easily as well. Then it's gone and I wonder when the next time will happen and if maybe it's our body saying that it needs to 'practice' coming back.
Yelling out for the dog to be quiet is my testing platform LOL The day that happens I'll know it's back for good! ;D The upside of this is that hubby and I don't argue at all because I've given up trying to put a point across :D :D :D
I'll update each time I see the speech therapist. It's a long road home ay?
Hugs and thanks,
Suu xxoo
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Good on you, Suu! It looks like a great place to spend the day.
Yelling at the dog(s)? Yep, that's the real test. For months I had to bang on the BBQ to get mine to come in.
-Tod
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Good on you, Suu! It looks like a great place to spend the day.
Yelling at the dog(s)? Yep, that's the real test. For months I had to bang on the BBQ to get mine to come in.
-Tod
ahem... focus on topic, folks? thanks! :)
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Tod,
I have wondered how much of the voice change I hear is because of SSD, if any. I sense a hollowness to my voice if that makes any sense. I seem to be adjusting to it, but I notice it more for awhile when my voice gets stronger periodically. Thanks for your reply.
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Beautiful place and love your sense of humor so important in recovery keep up the humor and thank you for putting a smile on my face about your husband and dog. Hmmmmmm.... dog and husband must be a connection there have to give this more thought...
Best Wishes,
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LakeErie, as my voice returned, and at times it was like being a teenager, it was very odd to hear it as SSD. I had my BAHA surger almost year post surgery, and it was a few weeks after that I/we decided that the next planned surgery (an implant) for my vocal cord was not necessary. Especially during those three months from then to receiving my BAHA, hearing my voice in the moments it was "normal" was very strange. That did become less noticeable once I got the BAHA.
When you go for a period of time with a very a weak voice, one that takes a lot of wind and effort to use, it is very hard (in my opinion) to get used hearing your voice as SSD.
-Tod
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When you go for a period of time with a very a weak voice, one that takes a lot of wind and effort to use, it is very hard (in my opinion) to get used hearing your voice as SSD.
-Tod
This is so true of what's happening to me too. With my tongue not having the feeling after the 12/7 graft, I feel like my voice is all garbled and when it comes back will I be understood or will I sound like I've had a stroke?
Time to worry about that later though.
I'm swallowing a lot better since putting my head to the side and if something gets stuck I get my bottle of water and take out the straw and just pour a lot at once to move it while trying not to inhale at the same time. It's like a circus performer trying out a new trick! ;D
PJB - you're welcome. My SOH is the thing that has my friends and family baffled at times.
LakeErie - I see your point about hearing our own voice differently. Can you ask someone directly how much of a change there is? I was surprised that people thought I sounded the same (this was before the graft and the probs since tho).
My voice is 'breaking through' more often now so all is crossed that it's returning permanently.
Thankyou all for following this journey.
Suu xxoo