Speech Therapy

[Tod]

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

[pjb]

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,

[pjb]

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 

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,,,

[LakeErie]

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

[Tod]

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

[Suu]

Tod - this is where we went to today. It's on the Central Coast of New South Wales, Australia -



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!    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 

I'll update each time I see the speech therapist.  It's a long road home ay?

Hugs and thanks,
Suu xxoo

[Tod]

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

[ppearl214]

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!

[LakeErie]

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.

[pjb]

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,

[Tod]

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

[Suu]

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! 

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