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#193590 12-15-2016 11:56 AM
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Uptown Offline OP
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I have been struggling with sinus drainage and saliva sliding into my lungs because my left vocal cord is paralyzed. Yesterday, I had filler injected to try and stop that and the vocal cord specialist thinks a side effect will be full restoration of my voice. While he was in there, he also dilated my esophageal sphincter to try and compensate for my weakened and atrophied swallow muscles. He also decided to dilate a little kink just before the sphincter that happened as the radiation damage was healing. He also did an EGD since I haven't had one since April 2012. Then he also did a bronchoscopy to assess the condition of my lungs. I feel like I really got my money's worth on all that. If things work out, I will be back to a year ago with some food in the picture for comfort eating.

I also was approved for Real Food Blends and have some on the way. It's been a pretty good week for me.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Your doctor is really conscientious! Hang on to him for dear life.

I hope it all works out for you, Uptown.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Patient Advocate (old timer, 2000 posts)
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I also have left vocal cord paralysis, and left lateral tongue paralysis, aspirate. I was sent twice several years to two different voice specialists, who are highly regarded, for collagen injections to help strengthen my voice, but had just completed one surgery, and too much going on, and ultimately declined at that time.

I'll be looking for your follow-up post to see how it went, and hopefully it will help with the aspiration too.

Good luck!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2003
Posts: 2,606
Likes: 2
Uptown Offline OP
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My high range is already working for the first time in at least 10 years and I have a little voice coming back. I have had 2 mornings of thick mucus pooled up around the pyriform sinus that usually just runs into the lungs so it's working so far.

The irony is I have chased this with my Otolaryngologist since February 2013 and because it was firing every now and then, he felt it wasn't a problem, even reviewing videos over and over with me. During my swallow therapy last summer, we used blue dye and a laryngoscope and I could visually see what was happening as the left vocal cord stayed open and blue dye penetrated the larynx. The SLP referred me to the best vocal cord specialist in the area who is a colleague of my Otolaryngologist. He seemed a little surprised to see me in the hall coming out of my appointment next to his office. The voice specialist took less than a minute scoping me and seeing the vocal cord was paralyzed. The entire face to face time was less than 10 minutes.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Sounds positive so far, Uptown! I heard there are different type of injectables, and some do it in the office, and some under sedation, I think as out patient. I wasn't how sure how mine would have been done. I thought I was getting by fine, and said so, but the colleague Dr who was interviewing me, testing my vocal range, asked if I was able to call out loud enough for help, if I needed, and I said no, so that made me think. My vocal cords were completely blocked too, besides the left paraylsis, from edema from two recent mouth surgeries, and the Dr, who was the director of the voice center, said it would be difficult to do. but he could do it, and had like 4 or 5 colleagues there showing the scope, and all, that I was happy to get out, and wound up being sent to SLP boot camp instead.

Maybe I'll have it done.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2003
Posts: 2,606
Likes: 2
Uptown Offline OP
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
I was coughing up a lot of blood Monday so i went to the ER and they ended up admitting me to do the standard protocol for allergy to IVP contrast because a CT shows a better picture of the lungs. The went ahead and did the throat because there was concern about the vocal cord injection. Everything looked fine but they were concerned about something that showed up in the right lung and after a day of consults with pulmonology, otolaryngology and neurology, everyone decided it was most likely pneumonia. I think it was the vocal cord injection material. I was discharged Thursday and returned for a couple swallow tests on Friday and they are now allowing me to resume eating pudding and nectar, chased with water. I can experiment a half of a teaspoon at a time, 2 times with the head to the right and 2 times with the head to the left. I also had the upper esophageal sphincter stretched and had a bronchoscopy and EDG while I was in there. The net of all that is my airway was unbelievably good as was the esophagus and they think my Nissen Fundoplication stitch caused the bleeding from a bad acid vomit that most likely caused the pneumonia, too. My voice range is the best it's been for 12 years and I'm starting back in swallowing therapy January 10 to work on food. It won't be meals or anything that excited, only comfort eating but that's pretty exciting.

Paul, the VFI I had was the longest acting, 12-24 months and only done with a microlaryngoscope in a hospital. I had to have a cardiac anethesiologist in the room during everything, but they only assigned a nurse anethstetist who just happend to have had 2 years cardiac experience, because of the baroreceptor issues, but I hydrated up for a day before the procedure, they hydrated me well before the procedure and they did an oxygen preload up to 100%. I had zero events for 2 hours for the longest period in the last 7 years. The NA even changed the IV tubing to a wider diameter with a backflow filter so if they had to medicate me for the congestive heart failure, it needed to be quick and precise.

I guess the VFI was a success. Time will tell.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Sounds like a mixed bag of everything, Uptown, but hopefully some subside, and injection eventually proves beneficial in the long run, but also have heard some being treated again over time.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2003
Posts: 2,606
Likes: 2
Uptown Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
All VFI cases require repeat injections, some office procedures every 3 months. The longest is 12-24 months.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023

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