Previous Thread
Next Thread
Print Thread
Botox for swallowing problems #199126
09-26-2019 12:13 PM
09-26-2019 12:13 PM
Joined: Jul 2009
Posts: 1,395
Los Angeles
D
David2 Offline OP
Patient Advocate (1000+ posts)
David2  Offline OP
Patient Advocate (1000+ posts)
D

Joined: Jul 2009
Posts: 1,395
Los Angeles
So a week ago my ENT injected Botox into my upper esophageal sphincter to relax the muscles. For a few years following my treatment in 2009, like many of you, I had numerous dilations. Those seemed to do the trick for awhile, but in recent years nothing has worked. The procedure was done in the OR under full anesthesia. He'd done a dilation a couple of months ago - in his office fully conscious (me, that is; well, he was too) - but it only lasted a couple of weeks. This was the next step. The one after this would be permanent: surgery to cut the muscle. So this was kind of a test drive.

He'd told me the Botox would take 3 days to kick in, and last 3 months, after which we could evaluate to see if I wanted to go ahead with the surgery.

Well... there have been complications. Specifically, it seems as though the 'tox has spread out to some of the surrounding airway, the result being a 50% drop in my airway opening. Imagine my surprise. I'm having to make a conscious effort to draw in breath all the time and really never feel as though I have a full lungful of air. The effect is most pronounced when I'm standing and a bit less sitting and less still lying down, which is fortunate. Having to work to breathe would be detrimental to sleep, to say the least. I can expect this to continue until the Botox wears off in mid-December.

There are two other things though that are possible in relief. One is a drug normally prescribed for myesthenia gravis and that my doc had never in fact used and had to look up. Apparently the SEs are significant though, and he advised me to use it only if things get worse. Which he could not predict but certainly didn't seem to rule out. Finally he could do surgery to attach part of my vocal cords to the side of my larynx. Let's hope this isn't necessary.

He did allow as that he had never seen this before in a patient treated in the OR. It's only been an issue with in-office procedures and their lack of precision. Nice to know, but doesn't help me breathe.

Bottom line: if your ENT offers Botox for swallowing difficulty be sure to bring this issue up!

Thanks for listening.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Re: Botox for swallowing problems [Re: David2] #199128
09-26-2019 03:12 PM
09-26-2019 03:12 PM
Joined: Oct 2012
Posts: 1,134
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,134
Toronto, Canada
Oh dear, David! That’s most unfortunate. It’s a surprise that the Botox has caused constriction of the airway when its effect is supposed to dilate. I’m so sorry that you have to go through this.

Thank you for the warning to others who might have the treatment suggested. This is how this forum is valuable — where those who have experience shine the light for those following in their footsteps. Thank you so much.


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.
Re: Botox for swallowing problems [Re: gmcraft] #199143
09-28-2019 10:30 AM
09-28-2019 10:30 AM
Joined: Jul 2009
Posts: 1,395
Los Angeles
D
David2 Offline OP
Patient Advocate (1000+ posts)
David2  Offline OP
Patient Advocate (1000+ posts)
D

Joined: Jul 2009
Posts: 1,395
Los Angeles
Thanks, Gloria. I really appreciate the good words. The crazy thing (well, it's all crazy actually) is that the whole deal really didn't help the swallowing issue and probably made it worse, adding episodes of acid coming up into my throat to everything else going on.

Oh well. Caveat emptor!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Re: Botox for swallowing problems [Re: David2] #199144
09-28-2019 12:21 PM
09-28-2019 12:21 PM
Joined: Jul 2012
Posts: 3,240
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,240
NYC
David2,

Thanks for the heads up! I saw several years ago Botox, and others being used for the head and neck, and vocal cords. I actually saw a top ENT for the vocal cords who did this with another agent, but I declined at that time due having other things going on.

Thanks!


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







Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,384
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,744
Newest Members
japerdue, LMC5183, TheWombat, Andorea, oc12
12194 Registered Users
Forum Statistics
Forums23
Topics17,583
Posts194,225
Members12,194
Most Online306
Aug 21st, 2016
Powered by UBB.threads™ PHP Forum Software 7.7.1