Six month check up...Clean

wmc
wmc Member Posts: 1,804
in Head and Neck Cancer #1

Well my six month check up was all clean and good to go. NED. 

However I am having some trouble with my laryngectomee as my TEP [vioce prosthies] leaks when I cough. They think it is ok, and no need to worry. But in the next breath, they want to put a custom gasket in to stop the leaking. Well that didn't work and I had to drive [215 miles] back and get that washer removed ASAP. That made for a long day with only three hours sleep and a four hour drive each way, but I got it removed and feel much better. Still leaks, "But I should be ok, It's only when I cough". With COPD that is about upwards to 50 times in a day.

Sorry, just needed to vent a little.

Bill

Comments

  • Guzzle
    Guzzle Member Posts: 710
    #2
    NED

    Well done mate. 215 miles. That would take you from the Irish Sea to the North Sea coasts of England. Your country is huge! It is like travelling around Europe!

  • lornal
    lornal Member Posts: 428
    #3
    Glad

    Glad your tests were NED.  Sorry to hear about your TEP.  I can't get one for a few more months because I had prior radiation.  But I have heard lots of not-so-pleasant stories about them - I think I'll pass and stick with my ElectroLarynx.  Fortunately, I can do some esophageal speech at home - one or two words.  I have actually found - with coaching from my husband (a marine in his earlier life) a lot of curse words I can say well with esophageal speech  Cool

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #4
    Ned

    Congrats on the NED. Sorry the custom gasket didn't work. as you know this is the greatest place to vent.

    Vent and heal on

          Jeff

  • Greg53
    Greg53 Member Posts: 849
    #5
    Duggie88 said:

    Ned

    Congrats on the NED. Sorry the custom gasket didn't work. as you know this is the greatest place to vent.

    Vent and heal on

          Jeff

    Bill

    Bill,

    Congrats on the NED.  Here's to many more to come.  Sorry about the TEP.  Good mojo being sent your way for that issue!

    Positive thoughts!

    Greg

  • donfoo
    donfoo Member Posts: 1,773 Member
    #6
    glad ...

    Great news on the NED. The other stuff is what happens, I see no venting, just stating facts of what happens and you showing you just dealing with it. Good for others to see what life is like for us now. Don

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #7
    Who do you see?

    Who do you see at Stanford?  My crew:  Dr. Sunwoo, Dr. Divi, Dr. Steven Chang, Dr. Loo.  Where are you in California?  I am in Merced (Central Valley).

  • wmc
    wmc Member Posts: 1,804
    #8
    KTeacher said:

    Who do you see?

    Who do you see at Stanford?  My crew:  Dr. Sunwoo, Dr. Divi, Dr. Steven Chang, Dr. Loo.  Where are you in California?  I am in Merced (Central Valley).

    Who I see...

    Dr. Kaplan in my Head & Neck Oncologist and surgen. I know I have been seen by Dr.Sunwoo, and Dr. Tomeh when in the hospital as well. I'm in Visalia, about 100 miles south of you. Between Fresno and Bakersfield.

  • wmc
    wmc Member Posts: 1,804
    #9
    Guzzle said:

    NED

    Well done mate. 215 miles. That would take you from the Irish Sea to the North Sea coasts of England. Your country is huge! It is like travelling around Europe!

    It is huge....

    Yes it is very large and driving is a big part of it. I'm from the center of the state and we drive everywhere and don't really think of it most times. When I go to that doctor I drive four hours and stay there only one or two hours then drive back home, five hours back because of the time of day. Heavy trafic and all. That makes it a 12 hour day for me. Doing it two days in a row took it's toll on me a little.  Thanks...

    Erin Go Bragh Laughing  [I'm Irish as well; 5/8]

    Bill     Oct 2013

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #10
    Venting NED

    Bill,

    It leaked out, your 6 month NED, that is.  Congratulations!

    50 coughs a day sounds normal.  My coughs come in spurts of 5 to 15 at a time, many times when just swallowing.

    I hope your next 215 miles is fruitful.

    Matt

  • wmc
    wmc Member Posts: 1,804
    #11
    lornal said:

    Glad

    Glad your tests were NED.  Sorry to hear about your TEP.  I can't get one for a few more months because I had prior radiation.  But I have heard lots of not-so-pleasant stories about them - I think I'll pass and stick with my ElectroLarynx.  Fortunately, I can do some esophageal speech at home - one or two words.  I have actually found - with coaching from my husband (a marine in his earlier life) a lot of curse words I can say well with esophageal speech  Cool

    TEP is Great Really

    Yes I have had some problems with my TEP. Most of my problems our from other conditions that I had before. I have worked in manufracting for over 40 years and have had to project my voice, [talk loud] and I still need to do that at work. I have GURD, acid reflex and a heital hernia as well as COPD. Both Broncitus and severe bullous emphysema that add to my condition. However I have a 98% O2 reading they can't explain why it is that good but just except that I do. Now you put that all together and the cutting of so many mucels in the throat, and you get some blow-bye when I cough. As for having the TEP, I do love it. My voice is mine just a little hourse sounding. With the TEP, I can blow my noise, whistle and so much more because of it. I will have problems that most others won't have, but I'll fight to keep my TEP. I just need to vent every so often. I always have the choise to have it removed, but I'll keep it.

    Thanks

  • wmc
    wmc Member Posts: 1,804
    #12
    Thank you all

     

    Thank you all for understanding the need to vent to the ones that really do understand. 

    This is one of the only places that I feel really does understand what we all go through. 

    Yes, we are all different and heal differential, but still understand the pain, fear, anxiety, 

    joy and happiness we go through on a daily bases just to survive. For that I thank you all.

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #13
    bill, woooowhoooooo on the

    bill, woooowhoooooo on the NED!!  fantatic news!  sorry to hear about the tep.  i was told if my tep starts to leak it just means it needs changed.  so far so good.  i hope they figure out why yours is leaking and fix it, i know it is very important to me to be able to talk and I'm sure you enjoy it also.  praying for it to all work out for you.  please let us know if they fix it.

    God bless,

    dj

  • patricke
    patricke Member Posts: 570 Member
    #14
    PROSTHESIS PROBLEMS

    Hey Bill,

    First of all, congratulations on the six month NED report, that's great!!  I'm also a laryngectomee since 6/11, and had similar problems with my prosthesis leaking all of the time.  At one point I almost put a tent in the loby of my speech therapist I was there so often.  My problem sounds like it was a litttle different than yours, in that, my leaks were caused by fungi colonization on my prostheses, which prevented the one way valve from trachea to esophagus from closing securely, which allowed fluids into my trachea, which would cause me to cough, which would often cause me to hurl.  Long story short, in 2013 my TEP fell into my esophagus because the fistula tissue that my TEP was placed in, damaged by radiation (the gift that .....) instead of sealing around the TEP, gradually began to expand into a cavernous opening.  Last September I had it patched closed, so I now no longer have a TEP, and utilize an electronic larynex device for speech. I should also mention that last summer the leakage caused me to aspirate a couple of times, causing aspiration pneumonia, resulting in a couple of hospitalcations; not even a little bit of fun.  So, Bill, I hope that your speech therapist, and /or ENT is/are checking on the health of the tissue surrounding your TEP, and do be very aware of the possibility of getting aspiration pneumonia from the leaked fluids.  Finally, you may already be aware of the Internatonal Association of Laryngectomees and are utilizing the information offered by the organization and members, but if not, I urge you to look them up on the web, it's another great group of folks.  You might find others in the IAL who have had problems like yours, and what they did to remedy the situation.  I hope that you are able to resolve the leakage issue very soon.   Oh, and last, lastly, remember that in addition to coughing due to COPD, the leaking provolks coughing, thus perpetuating the cycle.

    PATRICK

  • dunedintech
    dunedintech Member Posts: 90
    #15
    Great News

    Great to hear NED. Onwards. 

    CPC

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