#41183 05-13-2007 06:54 AM | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jan 2007 Posts: 346 | Now I just want to eat. My jaw was 40% bottom removed and replaced with bone from my back but that was rejected agfter 22 days and I had emergency surgery because I hemoraged and lost so much blood they had to give me blood and then they just never replaced my jaw. I can swallow now but my teeth do not meet and cannot chew. Is there any hope? Anybody had this old fashioned surgery these days?
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO. Had 14 hour operation which included reconstruction of jaw. Reconstruction failed. Some radiation, no chemo. | | |
#41184 05-13-2007 09:05 AM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Hey Peace
Surely they are going to try another replacement. are they not?
I can hardly eat solids but I eat all soft foods and mash them up. Chili, stew, soups. I cut everything into very small peices, then I only have to chew a little. I know this may not be much help, but it works for me.
There is Always Hope! Hope is a Good Thing! Petey
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#41185 05-13-2007 11:41 AM | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jan 2007 Posts: 346 | Thanks Petey, but I tried twice and do not want another 14 hour operation although they do not want to do another operation either. I am just done this way. Quess I should just be lucky to be alive but I yearn to eat anyway!
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO. Had 14 hour operation which included reconstruction of jaw. Reconstruction failed. Some radiation, no chemo. | | |
#41186 05-13-2007 12:04 PM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Peace there's always hope..don't ever give that to the Beast. I had my jaw removed and rebuilt with titanium and fibula. Thankfully, I've have no issues at all.
I have no idea whether they would try another recontruction of your jaw or not. If they don't, there is still lots to life that needs to be lived, and it doesnt depend on eating the way you used to.
I'm not sure what you mean by "old fashioned" though. the micro-vascular work involved with mandible reconstruction and donor bone is by no means old fashioned. It's only been in the past decade or so that it's even been possible. Beoyond that, the solution often was to simply remove the jaw completely; there just wasn't much else they could do.
Have you talked to the surgeons about future restorative work? I would want to exhaust every possibility in that regard
Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#41187 05-13-2007 01:00 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Hey Peace
I'm no Doctor and know very little about dentistry except that I went every 4 months for cleaning trying to save my teeth from gingivitas. I had deep scrapings, special mouthwash, etc. but I lost the battle and had to get dentures. I have a full bottom and a partial removeable top, that clips to 4 teeth.
What I'm trying to get to here is there must be a way to reshape your teeth, or do something to correct your "bite". Caps, bridge, partials etc. If you could get to chew on one side in the back would that be a big improvement? Maybe wilckdds aka Dr. Jerry Wilck DDS will chime in here and give you some advice.
If you go to the "Introduce yourself" forum, go to page 2. There is a topic titled "May I be at your service" by Dr. Dai Phan DDS MS. posted on 3-24-07(READ IT). He offers advice and you are in the scope of his work. I know there must be something that can be done besides a third attempt at reconstruction.
I am sending him this thread. You should look him up and send him a PM.
Remember, HOPE IS A GOOD THING! Peace Out, Petey
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#41188 05-13-2007 03:24 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Peace, I had half of my lower jaw replaced here in Virginia, the bone from my lower leg was used. That was four years ago and my jaw is fine so far. I strongly suggest that you ask about this procedure. There isn't any need for you to go the rest of your life missing your jaw. Not with the advancements we have with medicine now. Good luck, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#41189 05-14-2007 06:33 AM | Joined: Mar 2007 Posts: 21 Member | Member Joined: Mar 2007 Posts: 21 | Hello all,
I hope I can offer some advice to the OP. With today's advancement in surgical and reconstructive techniques, the entire jaw or part of the jaw can be reconstructed that will restore functions that were lost before. However, it should be noted that these types of surgeries are not for everyone. A surgeon must take into account the patient's overall systemic health and the prognosis of the case. Sometimes the risks or the end results may be too limited to justify for the commitment of the surgery. If the reconstruction is not recommended, be sure to find out the reasons. Is it because your medical center does not have the personel to do the surgery and specialists to restore your dentition? Or is it because of your systemic condition considerations that put you as a poor candidate for surgery? Or perhaps there are other options that may be better than reconstruction of your jaw? It is always wise to seek second or third opinion regarding your situation.
Let's assume that surgical reconstruction of the lower jaw is not possible, then what is next? When a jaw is resected, you will loose the normal relationship of the upper jaw to the lower jaw. That is the resected side tends to rotate out of the position due to the lack of equal muscle pull. However, there are oral prostheses that can restore occlusion (teeth coming together) and allow you to masticate the food properly. From what I read of your post, you do not have problem swallowing nor having part of your tongue removed so I would say that the prognosis of having an appliance that works for you is good. However, these types of appliances are best left for prosthodontists or maxillofacial prosthodontists. Another point to consider is to monitor your ability to open your mouth. If you notice a decrease in your mouth opening, contact your dentist or physician and inquire about a trimus appliance at once. Untreated trimus will cause a huge complication for prosthesis construction. What is the world's simplest trismus appliance? A: Taped together tounge blades.
It should be noted that these appliances will not look normal and they will not allow you to eat all kinds of foods like before. However, they will provide adequate teeth contacts during function. DP | | |
#41190 05-14-2007 04:29 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Peace,
Sorry to hear what you are going through. Dr. Phan is certainly more qualified to answer your questions and I am happy to see that he has done so.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#41191 05-15-2007 04:30 AM | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2006 Posts: 388 | Quick question for Jerry or Dr. Phan - Does the Vizilite and/or VELScope light up OTHER problems besides just oral cancer, like lichen planus or leukoplakia? THANKS! JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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#41192 05-15-2007 02:51 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | These devices are NOT DIAGNOSTIC for cancer, they are discovery devices. While the VELscope is more sophisticated, if you don't know what you are looking at, these things are not going to be a substitue for knowing what you are looking at. They will find EVERYTHING including pizza burns, and cheek bites. You have to understand how to do a proper screening first, they are ADJUNCTIVE devices. They will find leukoplakia, lichen planus, herpes simplex and the list goes on and on.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#41193 05-15-2007 04:26 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Jane,
The points Brian makes are right on the money, of course.
The procedures we follow in our office is to first do a very thorough clinical exam. We do a visual and palpation exam and note any red or white areas that are clinically visible. When using the VELscope, these areas will be visible too and we will confirm that what we have seen are not precancerous or cancerous areas as they will not show up as black areas under the light. Any suspicious areas that go away when an instrument is pressed over them are areas of blood.
We have had several areas biopsied and to date, none have come back as cancer.
Hope this helps.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#41194 05-16-2007 03:11 AM | Joined: Mar 2007 Posts: 21 Member | Member Joined: Mar 2007 Posts: 21 | Hello all,
I have heard of the Velscope but have not used it or seen it first hand. My opinion is that you do not need any gadgetries to diagnose or indentify "trouble" spots. All you need is to do a complete oral screening and perform biopsy if you are in doubt. It would be nice to have but I am afraid that it may give you more false positives than it is worth. DP | | |
#41195 06-02-2007 02:01 PM | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2006 Posts: 388 | We were gone to Minnesota for a couple weeks for emergency surgery for my 91 year old Mom (who will now be moving down to Florida near us, soon), so I am just seeing your responses now. Therefore, Gary, Jerry, and Dr. Phan, THANK YOU for your clear and concise answers. My Mom had a strangulated bowel, which compared to oral surgery and radiation therapy, was a breeze . By the way, Jerry, I haven't had any more dreams about you, but when they are that boring, I guess that's for the best :rolleyes: Thanks again....JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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