| Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 |
Earlier this week I had surgery to release the floor of my mouth/tongue flap + a skin graft. When my jaw was reconstructed the original tongue flap had to be re-done because of damage from radiotherapy/chemotherapy - osteoradionecrosis (ORN). The treatments destroyed my mandible, (lower jaw) and also the flap that was anchored down to perform and function as a tongue and floor of mouth. Since the cancer was removed in 2007, I no longer have a mobile tongue.
The 2nd flap was built with skin and tissue from my hip that was extended through to the neck dissection join - the flap was incredibly tight and unmovable. Others familiar with flaps know how frightening and uncomfortable they can be, let alone when radiation has been given on and around the flap to create further complications with movement, healing etc.
I hope this release will provide more mobility to improve my speech and ability to swallow soft foods. Dribbling and drooling has been an issue since my jaw bone was removed and reconstructed. Once our facial bone structure has been re-arranged, the aftermath can be incredibly difficult in many ways. Anyone who has had their mandible jaw cut and shut would understand EXACTLY where I am coming from.
The skin graft on the tongue flap is full of stitches and looks ok. (ugly and gross to others. HA - that�s what they get for wanting to look!!) Judging from what I can see through the dressing, the donor site on my hip where the skin graft was taken, has a wound about 5 inches long. The plastic surgeon also pumped some fat into my chin to improve the contour and appearance of my lower face.
Due to my airways, and the possibility of complications with swelling etc, I spent a couple of nights in hospital under observation.
My follow-up appointment with the Plastic surgeon is next week. I�m not sure if the stitches in my chin and hip will be left in for longer or removed. I wouldn�t be surprised if the chin stitches stayed in longer because of radiotherapy damage to that area.
I will keep you updated following my check-up next week.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | That's nnot. Fun surgery - but you sound kie you are doing good - baby steps right? Good luck - heal quickly!!!
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Karen,
So good to hear from you. Wow, what a complicated procedure! I hope that this gives you the increased mobility you want. I know what you mean as I see Clark struggle with that tightness and pulling sensation every day. My best to you as you heal. May it be smooth and uneventful! Hang in there.
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Thanks Cheryl and Anita.
Anita. Most days the tightness from the neck dissections, radiotherapy and lack of muscle etc, feels like I�m being strangled. Elastic with out the elasticity!! It is incredibly uncomfortable and limits mobility internally and externally.
About a month ago I was referred to a physiotherapist who had oral cancer + bilateral neck dissection in 2009. Since that time, he has practiced many exercises on himself to improve the tightness and pulling. So far, he has concentrated on exercising the muscles and stretching of my lower face, mouth and neck. Over the past few years, I have been to a couple of physios, but wasn�t happy because I made little, if no progress.
I will write down the exercises and pass them on to you so Clark can try them, or check with his physio if it is ok for him to do them.
Take care
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Hi Karen, I'm glad that you had the procedure and the fat transfer that you told me about. What an ordeal! I hope it achieves all the things that you hope it will achieve! You are beautiful.
Sending you a hug and kiss!
Love, Sandy xoxox
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Thanks Sandy, I appreciate your kind words. ((hugs)) back at you!!
So far the skin graft is looking good. The wound on my hip is still tender. (hmmm any wonder, surgery was less than a week a go)
Only time will tell how much the tongue flap skin graft surgery has helped. If it creates a gutter, improves the flap mobility or some how helps me control saliva, it will be well worth it.
My lower face along with my rebuilt jaw structure can�t be changed or improved since the mandible reconstruction due to ORN in 2008. As a result of that surgery, I have to do what ever it takes to improve mobility and other issues with what�s left in my mouth/oral cavity. Unfortunately, I don�t have many options available to improve my situation. Fingers crossed....I will take what ever I can - a small improvement is better than nothing!!
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | 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 | Karen, thanks for posting your procedure. I always read what you are having done and turn around and ask my doctors if those things can be done to help me. The answer is always "NO". One of these days my doc has to say "YES". You are amazing being able to go thru so many surgeries!
Wishing you all the best with your 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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Thanks Christine!. I have experienced the, �No way, what you�re asking can�t be done Karen,� and �Gees Karen, you�re pushing the envelope� replies a couple of times. Hearing those words felt like the roof caved in on me. I was shattered! Since my jaw and face was re-arranged, I have cried more often driving home from medical appointments than I have about anything and everything that has upset me rolled into one throughout 40 + years.
I understand one thing in my favor is I had a bone mandible reconstruction, not a metal/titanium mandible reconstruction, otherwise I would have more complications and restrictions. My story would be different. It has taken a while, but I�m coming to terms with the fact I can�t get the shape and length of my lower face or chin back. Obviously this upsets me, but I�m doing my best to deal with it.
I�m on a mission to stop the dribbling and drooling I experience all day. (similar to a stroke patient ) It drives me bonkers! If I get that under control, I will be satisfied and in a better position to deal with the permanent swallowing and speech issues I have.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Hi Karen,
What an ordeal you have been through. I will keep you in my prayers that the surgery achieves what you wanted! Keep us posted.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | It sure has been an ordeal Susan! Thanks for your message.
Today�s check-up went well. My Plastic Surgeon is pleased with the release of the tongue flap and skin graft.
For the first time in 3 years I can move /lift the back of the tongue flap (left side) and feel it touch my upper teeth. The tongue flap and graft is swollen, but the tongue flap can now be moved. In a few days I will massage the tongue flap- skin graft to ensure it doesn�t stick down while healing.
Fat transferred into my chin is holding well. At the moment it feels firm. The fat has filled and shaped it a little. In a healthy chin, 80% of fat transferred remains, the rest usually dissolves into the body. When fat is transferred into a damaged radiated area like my chin, the percentage of healthy fat that remains drops dramatically, it doesn�t survive.
My chin and hip is bruised. The nurse removed the stitches from my chin. The stitches on my hip (donor site for graft) are dissolvable, as are the stitches on the tongue flap holding the skin graft.
The Plastic Surgeon said in a couple of months, once my tongue has settled, she would be happy to release the right side as much as she can. The reason she wouldn�t release both sides at once was incase the surgery turned ugly. The risk of damaging blood circulation in the tongue flap could destroy it causing the entire flap to die. Thankfully, everything went according to plan.
Next check-up is in a week.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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