#79715 08-31-2008 06:10 PM | Joined: Aug 2008 Posts: 3 Member | OP  Member
Joined: Aug 2008 Posts: 3 | My pain specialist says I have nerve damage and so my mouth pain will take years to go away. He wants to do a glossopharyngeal. nerve block followed by a nerolitic procedure. The doctors intentionally damages the nerve so the possibility of no pain. Unfortunately, the proceedure kills another salivary gland(I already have extreme dry mouth), it causes less taste and makes your heart beat faster. The last downside is that sometimes it can make the pain worse. Any comments or experiences. I'd really appreciate it. | | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | Hi Laurel - I am in stanwood but used to live in B'ham for years so wanted to say Hi neighbor!
I have not had this done but it sounds like a catch 22 to me.
I think I would get a second opinion and see if there are other options to deal with the pain issues you are facing. Losing a salivary gland can make life complicated in and of itself for eating and everyday life ... and if it can possibly make things worse not better in the pain category too along with the other side effects you listed ... i yi yi ... Can they not do something else to deal with the pain until the nerve damage heals?
I am so sorry you are dealing with this. I will pray that you get good counsel and that a solution is found that will be to your betterment. Hang in there.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Laurel:
Welcome to OCF. I do not have experience in that type of procedure. It does sound like the side effects are risky, a second opinion sounds like it would be the way to go.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Laurel,
From what you described I would at a minimum get other opinions and I doubt I would risk all the downsides for the upside which you really didn't go into that much. So without more knowledge about the years of pain you would have to go thru w/o this procedure and based solely on your descriptions of the downsides I personally wouldn't do it.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I think I would be after at least 1 more opinion and maybe 2 more. Sounds like that procedure hasn't proven out yet.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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