Hi @pauley I'm sure by now the thought has gone through your head "What have I done to myself?" or similar. The feeding tube, what a joy that is to deal with. You try to wrap it around your ear during a shower but manage to snag it anyway. Then you get soap in your trach. Ouch! Meanwhile everything hurts. You look in the mirror and you see the Elephant Man!
Amazingly it gets better and it does so rather quickly compared to what got you to this point in the first place. A month from now you will feel a heck of a lot better than you do now. By Halloween you will wish you still looked like you do now, just to scare the kids, haha.
I'm headed up to Mayo Clinic this morning for a five year check up for the same surgery. I have the rather common occurrence of flap tissue growing around my prosthesis, which must be ablated from time to time. I've finally got used to the numbness in my lower lip but still find it difficult to hold a steady note on the bugle. Anyway, better days ahead for you my friend. Courage.
@hrhwilliam
I so appreciate the humor you drop in your comments. I don't see any bugeling in my near future. Lol
Thank you for sharing your experience. They actually took both the trake and feeding tube out this morning. As long as i can eat a purad diet today I may be sent home tomorrow.
I pray all goes well with your check up.
Pauley
I've had ORN after right lateral mandible was excised and reconstructed using bone from left fibula. Will have reconstruction. Three possible surgeries to choose from: Not replacing mandible with bone but filling with free flap; replacing with acapula; or replacing with right fibula. Models being constructed but leaning toward gueling third option because it could offer the most functional relief.
I've had ORN after right lateral mandible was excised and reconstructed using bone from left fibula. Will have reconstruction. Three possible surgeries to choose from: Not replacing mandible with bone but filling with free flap; replacing with acapula; or replacing with right fibula. Models being constructed but leaning toward gueling third option because it could offer the most functional relief.
Hello @m0h1pp I am trying to understand what you are facing. Are you having a second reconstruction due to failure or perhaps poor initial surgery? And "filling" with free flap I don't understand as well. Typically the bone is replaced with bone and attached quality free flap which is meticulously connected to the blood supply to keep it all alive and healing. This entire procedure is highly technical and normally done at only a handful of centers in North America, Europe, and Asia although I understand some local surgeons try to give it a go as it were. I hope that isn't the case for you. Do you have some background?
Hello @m0h1pp I am trying to understand what you are facing. Are you having a second reconstruction due to failure or perhaps poor initial surgery? And "filling" with free flap I don't understand as well. Typically the bone is replaced with bone and attached quality free flap which is meticulously connected to the blood supply to keep it all alive and healing. This entire procedure is highly technical and normally done at only a handful of centers in North America, Europe, and Asia although I understand some local surgeons try to give it a go as it were. I hope that isn't the case for you. Do you have some background?
I had a right segment of the lateral mandible removed due to stage 4a cancer. The left fibula was used to reconstruct the mandible and a free flap placed. I underwent 30 rounds of radiation. Four years later, a second superficial cancer was found on the floor of the mouth near the back of the tongue. I had a partial glossectomy and resurfacing of the floor of my mouth with blood vessels and and free flap from my left arm. within several weeks, it became obvious that osteoradionecracy had been stimulated, which resulted in one plate's screws coming out through my cheek and my lower jaw dropping a bit and moving to the right. I insisted on a PEG tube so I could take in enough calories, then agitated to get corrective measures done. Physicians checked to assure no cancer had recurred. The is being planned, hopefully for this fall. It is at a cancer center.
I had a right segment of the lateral mandible removed due to stage 4a cancer. The left fibula was used to reconstruct the mandible and a free flap placed. I underwent 30 rounds of radiation. Four years later, a second superficial cancer was found on the floor of the mouth near the back of the tongue. I had a partial glossectomy and resurfacing of the floor of my mouth with blood vessels and and free flap from my left arm. within several weeks, it became obvious that osteoradionecracy had been stimulated, which resulted in one plate's screws coming out through my cheek and my lower jaw dropping a bit and moving to the right. I insisted on a PEG tube so I could take in enough calories, then agitated to get corrective measures done. Physicians checked to assure no cancer had recurred. The is being planned, hopefully for this fall. It is at a cancer center.
That explains it well. Some of us just get beaten so badly from cancer it seems so unfair. For me I get my mandible checked yearly and so far so good. I do know of cases where the blood supply to the tissue has failed, which resulted in likely what you are going through. I wish you well and pray all works out this fall. Sorry that you have to go through yet another battle.
That explains it well. Some of us just get beaten so badly from cancer it seems so unfair. For me I get my mandible checked yearly and so far so good. I do know of cases where the blood supply to the tissue has failed, which resulted in likely what you are going through. I wish you well and pray all works out this fall. Sorry that you have to go through yet another battle.
To clatify ORN, women on my mother's side have all had severe osteoporosis due to excess calcium excretion by the kidneys. I was disgnosed about 6 years prior to the cancer. The radiation after my initial surgery may have been the onset of ORN, but it went on a rampage after the partial glossectomy. After several months of antibiotics, it was mostly contained but seems to be present at a very low level now. The plan is that after the next surgery, a massive dose of antibiotics. Carotid artery intima have also become calcified due to radiation and will eventually have to be reamed out.
I had the red flap surgery January 3 2023. 12 hour surgery. Gruesome but it worked which I’m grateful for. I’m dealing now with radiation damage in jaw and my inability to swallow is worse. I’m doing swallow therapy and purée my food. Hard work but I want a taco hahaha
Thank you for responding.
suzannekay753m i understand the wanting a taco with all the problems that go along with our journey. so one day i thought well, i willput in some taco seasoning in the food processor chic peas. so the taste was there but of course not the "crunch". also, it might make you cough more too as i did, so i weakened it down with some applesauce. wishing you the best. i will keep you in my prayers. lilyann
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@hrhwilliam
I so appreciate the humor you drop in your comments. I don't see any bugeling in my near future. Lol
Thank you for sharing your experience. They actually took both the trake and feeding tube out this morning. As long as i can eat a purad diet today I may be sent home tomorrow.
I pray all goes well with your check up.
Pauley
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2 ReactionsI've had ORN after right lateral mandible was excised and reconstructed using bone from left fibula. Will have reconstruction. Three possible surgeries to choose from: Not replacing mandible with bone but filling with free flap; replacing with acapula; or replacing with right fibula. Models being constructed but leaning toward gueling third option because it could offer the most functional relief.
Hello @m0h1pp I am trying to understand what you are facing. Are you having a second reconstruction due to failure or perhaps poor initial surgery? And "filling" with free flap I don't understand as well. Typically the bone is replaced with bone and attached quality free flap which is meticulously connected to the blood supply to keep it all alive and healing. This entire procedure is highly technical and normally done at only a handful of centers in North America, Europe, and Asia although I understand some local surgeons try to give it a go as it were. I hope that isn't the case for you. Do you have some background?
I had a right segment of the lateral mandible removed due to stage 4a cancer. The left fibula was used to reconstruct the mandible and a free flap placed. I underwent 30 rounds of radiation. Four years later, a second superficial cancer was found on the floor of the mouth near the back of the tongue. I had a partial glossectomy and resurfacing of the floor of my mouth with blood vessels and and free flap from my left arm. within several weeks, it became obvious that osteoradionecracy had been stimulated, which resulted in one plate's screws coming out through my cheek and my lower jaw dropping a bit and moving to the right. I insisted on a PEG tube so I could take in enough calories, then agitated to get corrective measures done. Physicians checked to assure no cancer had recurred. The is being planned, hopefully for this fall. It is at a cancer center.
That explains it well. Some of us just get beaten so badly from cancer it seems so unfair. For me I get my mandible checked yearly and so far so good. I do know of cases where the blood supply to the tissue has failed, which resulted in likely what you are going through. I wish you well and pray all works out this fall. Sorry that you have to go through yet another battle.
To clatify ORN, women on my mother's side have all had severe osteoporosis due to excess calcium excretion by the kidneys. I was disgnosed about 6 years prior to the cancer. The radiation after my initial surgery may have been the onset of ORN, but it went on a rampage after the partial glossectomy. After several months of antibiotics, it was mostly contained but seems to be present at a very low level now. The plan is that after the next surgery, a massive dose of antibiotics. Carotid artery intima have also become calcified due to radiation and will eventually have to be reamed out.
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Helpful -
Hug
1 Reactionsuzannekay753m i understand the wanting a taco with all the problems that go along with our journey. so one day i thought well, i willput in some taco seasoning in the food processor chic peas. so the taste was there but of course not the "crunch". also, it might make you cough more too as i did, so i weakened it down with some applesauce. wishing you the best. i will keep you in my prayers. lilyann