| Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | OP "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Help/Advice Needed - I have searched OCF & found one other member who had the the rebuild procedure I did. "Pete D" for those of you who remember him.
His experience was: "They removed all of my tongue, except one portion on left side at top of tongue base (that leaves me with some taste buds). Since the thigh donor site isn't apparently as vascular as the wrist site, they wrapped Doppler sensors around the major vein and artery, with wires hanging out to listen to the vessels. That meant that instead of sticking pins in my flap every few hours, they listened to the blood flow (and still made some sticks)."
For me, that surgery was 8 years ago (on Friday April 6th), and wouldn't you know it - I have a bizarre side effect. At the time of the surgery, the wires instaled went from the doppler system, into my tongue and somehow went across my neck (near the surgery line).
I recently had a biopsy on a weeping lump in my neck - which - thankfully - was not cancer. Turns out what it is is the broken end wires of the doppler system that was put in 8 years ago. They are protruding and causing a weeping lump. My body does tend to - eventually - hit the "reject" button on things other people retain such as certain sutures. My surgeon says that I am "unusual" in this regard. And now, for some reason, my body has hit the Reject button on these wires.
Since the 1st surgery, both sides of my neck have been radiated.
I am concerned that removal of the wires will be difficult and/or dangerous. I am also concerned that I cannot leave these things in there.
Anyone have any experience with this? My surgeon expected this result and during the biopsy process explained to his new staff that this doppler wire monitoring was a throwback to something they "used to use in the old days". (I think he was bugging me there - but frankly I'm happy to be around to remind them of the "old days")
What to do? Is this an issue for the Plastics Team?
Hope to hear from someone!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | 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 | HHHmmmmm!!!!???!!!!
Leave it to you Donna to have something so unusual that only one other member ever mentioned having it done before. Of course I remember Pete. I loved him and his little furries! He was always so upbeat and humorous even when things werent good he still found the positives to cling to.
Im sorry but I do not have info about whats going on with you. I wish I did. Which doctor did the Doppler sensors? It could be plastic surgeons who would do such intricate work. I know they worked right along with my ENT during my 10 hour surgery.
Hope you keep us posted as this is something that others may need help with down the line.
Best wishes!!! 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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | I did a search on doppler wires and found references to heart and breast cancer surgeries, but not to your particular issue. People can 'carry' all sorts of foreign bodies (thinking of bullets and shrapnel) with varying degrees of distress. Sorry that your cancer war-wound is being annoying, and best wishes for a successful fix!
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hmmm - I would say have it removed by your ENT - it shouldn't stay particularly when your body wants it gone!!! Glad it's not CA !!!! Woot! Hopefully this far out you'll heal up normally!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hello, Kris had the Doppler with wires inserted to monitor his new "tongue" - or rather the blood flow to the tongue. His surgery was 4 weeks ago. Prior to discharge home yesterday, I asked the nurse what the 1cm bit of wire ? Suture was hanging out of his neck wound. She took one look and pulled. A 6 inch piece of thin wire came out. She told me that when the Doppler was removed it must have broken off. Fortunately the surgery was recent so the wire was easily removed. I would think that after all the years yours has been left in that simply pulling it won't work. What does your surgeon say? I would think it will need to be removed surgically. Wishing you all the best, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | OP "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Saw my surgeon today and they are going to do a minor procedure on Friday to remove at least part of the wire which my body is now, after 8 years, rejecting. Normally the wire would remain, but turns out I'm not "normal". Was this their first clue?? Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | [quote=Pandora99] but turns out I'm not "normal". [/quote] Well thank goodness for that!!
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | 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 | Wishing you all the best your your procedure on Friday. Hope its quick and you are able to go home afterwards. Also wishing that you have a quick, pain-free recovery. 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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Normal is boring good luck!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | |
Forums23 Topics18,168 Posts196,927 Members13,104 | Most Online458 Jan 16th, 2020 | | | |