William Olsen, Volunteer Mentor | @hrhwilliam | Nov 29, 2023
Hello @suzannekay753 and welcome to our H&N group. Although some of us have had Mandible and upper jaw reconstructions, let's see if someone pops in with skull base experience. Can you pinpoint where at the skull base this is/has been done?
Hi Suzanne, I extended the title of this discussion to describe your question. While osteoradionecrosis is a rare complication of the treatment of skull base tumors, surgical treatment like free flap reconstruction has a high success rate.
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.
Due to radiation I’ve had the worst time swallowing. It’s been 9 years cancer free. Unfortunately the radiation has caused so much damage I am now dealing with Osteoradioncrosis. January 2023 I had a 12 hour reconstructive. surgery to remove infected tissue and bone which was replaced with new tissue and veins from my arm into my skull base. Quite a surgery I must add. Yuk. For the past several months I have had major problems swallowing and now have thrush.. it’s been over 2 weeks and not getting better. I’ve had one electrical stimulation session. My swallowing seems to be getting worse. M coughing a lot and sometimes I feel like I’m choking. I coughed up a small amount of blood . More pink than red then blew mucus and blood clot from my nose. I don’t know what to do anymore or who to see.
Due to radiation I’ve had the worst time swallowing. It’s been 9 years cancer free. Unfortunately the radiation has caused so much damage I am now dealing with Osteoradioncrosis. January 2023 I had a 12 hour reconstructive. surgery to remove infected tissue and bone which was replaced with new tissue and veins from my arm into my skull base. Quite a surgery I must add. Yuk. For the past several months I have had major problems swallowing and now have thrush.. it’s been over 2 weeks and not getting better. I’ve had one electrical stimulation session. My swallowing seems to be getting worse. M coughing a lot and sometimes I feel like I’m choking. I coughed up a small amount of blood . More pink than red then blew mucus and blood clot from my nose. I don’t know what to do anymore or who to see.
Due to radiation I’ve had the worst time swallowing. It’s been 9 years cancer free. Unfortunately the radiation has caused so much damage I am now dealing with Osteoradioncrosis. January 2023 I had a 12 hour reconstructive. surgery to remove infected tissue and bone which was replaced with new tissue and veins from my arm into my skull base. Quite a surgery I must add. Yuk. For the past several months I have had major problems swallowing and now have thrush.. it’s been over 2 weeks and not getting better. I’ve had one electrical stimulation session. My swallowing seems to be getting worse. M coughing a lot and sometimes I feel like I’m choking. I coughed up a small amount of blood . More pink than red then blew mucus and blood clot from my nose. I don’t know what to do anymore or who to see.
Thank you for sharing. I’ve had feeding tube on 2 occasions. Now the surgeon says it’s too risky to have another tube. I’m going to keep trying with swallow therapy and the stimulation. At least I’ll be trying. We shall see. Right?
Due to radiation I’ve had the worst time swallowing. It’s been 9 years cancer free. Unfortunately the radiation has caused so much damage I am now dealing with Osteoradioncrosis. January 2023 I had a 12 hour reconstructive. surgery to remove infected tissue and bone which was replaced with new tissue and veins from my arm into my skull base. Quite a surgery I must add. Yuk. For the past several months I have had major problems swallowing and now have thrush.. it’s been over 2 weeks and not getting better. I’ve had one electrical stimulation session. My swallowing seems to be getting worse. M coughing a lot and sometimes I feel like I’m choking. I coughed up a small amount of blood . More pink than red then blew mucus and blood clot from my nose. I don’t know what to do anymore or who to see.
Absolutely! Keep on trying and stay positive. You never know. Our ENT suggested a total laryngectomy in order to eat. My husband is not sure if he wants to go through it. I don’t blame him, but it’s so hard not being to take anything by mouth. May I ask why you had to have the tube removed ? Did you have a PEG tube in?
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Hello @suzannekay753 and welcome to our H&N group. Although some of us have had Mandible and upper jaw reconstructions, let's see if someone pops in with skull base experience. Can you pinpoint where at the skull base this is/has been done?
I’ll have to look it up so give me some time. Sorry
Extended endoscopic resection/debridement of lesion of midline Clive skull base including sphenoid sinus and nasopharyn
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1 ReactionThanks. Now I’ll have to look up the Latin translation lol.
Hi Suzanne, I extended the title of this discussion to describe your question. While osteoradionecrosis is a rare complication of the treatment of skull base tumors, surgical treatment like free flap reconstruction has a high success rate.
Are you scheduled for free flap recontruction?
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.
-
Like -
Helpful -
Hug
1 ReactionDue to radiation I’ve had the worst time swallowing. It’s been 9 years cancer free. Unfortunately the radiation has caused so much damage I am now dealing with Osteoradioncrosis. January 2023 I had a 12 hour reconstructive. surgery to remove infected tissue and bone which was replaced with new tissue and veins from my arm into my skull base. Quite a surgery I must add. Yuk. For the past several months I have had major problems swallowing and now have thrush.. it’s been over 2 weeks and not getting better. I’ve had one electrical stimulation session. My swallowing seems to be getting worse. M coughing a lot and sometimes I feel like I’m choking. I coughed up a small amount of blood . More pink than red then blew mucus and blood clot from my nose. I don’t know what to do anymore or who to see.
My husband is a larynx cancer survivor. He had electrical stimulation but it didn’t help him. He has a feeding tube for the last 2.5 years.
Thank you for sharing. I’ve had feeding tube on 2 occasions. Now the surgeon says it’s too risky to have another tube. I’m going to keep trying with swallow therapy and the stimulation. At least I’ll be trying. We shall see. Right?
Absolutely! Keep on trying and stay positive. You never know. Our ENT suggested a total laryngectomy in order to eat. My husband is not sure if he wants to go through it. I don’t blame him, but it’s so hard not being to take anything by mouth. May I ask why you had to have the tube removed ? Did you have a PEG tube in?