Relief from Radiation Fibrosis Syndrome

Stephen, it is great to hear about your success. My treatment was in 2012 and my fibrosis has been getting worse and worse for the last 6-7 years. Been getting botox for 3 years with varying relief. I can get injections every 12 weeks but I have never had more than 6 or 7 weeks of relief. The last round in February did nothing. I would love to hear more on the plastic surgery option. Any insight on how to get into the Mayo Clinic? I can get a referral but would love to know the process.

I've never received such a diagnosis, nor is this something I've ever heard of or have been offered over the past 19 years. The silver lining in the uptick of neck cancer is the new treatments being tried. I'm glad it worked for you. If you haven't seen my post, keep an eye on your BP. Up to 80% of patients experience baroreceptor failure after neck cancer treatment, causing one's BP to fluctuate wildly. Good luck!

@56tburd I just created an account to connect with other people having long term complications from the radiation therapy that saved my husband's life. His baroreceptor function was so messed up for too long and his doctors were not comfortable with the newer Barostim device. So he suffered and his heart was so affected by the BP fluctuations and overreaction caused by the ANS dysfunction over the years that he just had to have a pacemaker/defibrillator device implanted a week ago.
His cancer treatment was in 2012 so it's been 14 years of one health condition after another. Still though, he's powering through because he's "Always a Marine" and I'm grateful he's still here with me.

@mwpcaretaker Semper Fi to your husband. It's been quite the journey, and the baroreflex issue has definitely been a complication. Just when I think I have it under control, I am greeted with a ridiculous BP reading. When I first learned of it, one cardiologist told me I wasn't his bread and butter, and another told me I'd have to learn to live with it. I'll be seeing another cardiologist soon as I've developed more complications. Research suggests having an autonomic specialist on my team. I'm still looking into that. One great source for the latest research is Google Scholar. Good luck!

@56tburd I just created an account to connect with other people having long term complications from the radiation therapy that saved my husband's life. His baroreceptor function was so messed up for too long and his doctors were not comfortable with the newer Barostim device. So he suffered and his heart was so affected by the BP fluctuations and overreaction caused by the ANS dysfunction over the years that he just had to have a pacemaker/defibrillator device implanted a week ago.
His cancer treatment was in 2012 so it's been 14 years of one health condition after another. Still though, he's powering through because he's "Always a Marine" and I'm grateful he's still here with me.

@56tburd I tried to get him into Vanderbilt Autonomic Dysfunction Center because they list Baroreflex Failure as one of the disorders they see people for, but after almost a year of being unable to get him in, we moved on to seeking other treatment.
Besides wild blood pressure fluctuations, he began having overreacting fight/ flight symptoms. Sometimes just a minor startle reaction caused so much cortisol and adrenalin release that his BP would shoot up, face turn really red and sometimes not able to form words correctly. The first time I saw that, I was really afraid he was having a stroke because he didn't realize his words weren't correct. I understand what that was now and we try to avoid anything that could cause a reaction like that again.
I'm not a doctor but I'm POSITIVE the constant strain on his heart of the fluctuating BP and stress reactions is what caused the heart failure of unknown origin that his doctors called it.
It seems like it's always something new to add to the list. I'm sure it seems that way to you also...

@mwpcaretaker Semper Fi to your husband from me as well (USMC 1989-93). I’m 3 years out from surgery, chemo and radiation on my left side of my neck. No major complications so far other than mild fibrosis and lymphedema but I’m apprehensive about the years to come reading about others long term struggles. Thank you for sharing his story. It seems to me the same folks that help save our lives don’t have much to say about long term radiation effects. I want to be proactive and do everything I can to minimize them.

@mwpcaretaker Semper Fi to your husband from me as well (USMC 1989-93). I’m 3 years out from surgery, chemo and radiation on my left side of my neck. No major complications so far other than mild fibrosis and lymphedema but I’m apprehensive about the years to come reading about others long term struggles. Thank you for sharing his story. It seems to me the same folks that help save our lives don’t have much to say about long term radiation effects. I want to be proactive and do everything I can to minimize them.

@mwpcaretaker I'm currently taking 100mg Labetalol first thing in the morning and 400mg at night. I have on hand .1mg Clonidine to offset hypertension spikes and 5mg Midodrine to help with hypotension lows. It took a long time to come up with this combination, but research now supports it. They suggest it can't be controlled, rather to treat the symptoms for quality of life. So far it has helped even though I still experience exaggerated highs and lows. It sounds like your husband's condition is a challenge. I hope he finds what works for him.

Stephen, it is great to hear about your success. My treatment was in 2012 and my fibrosis has been getting worse and worse for the last 6-7 years. Been getting botox for 3 years with varying relief. I can get injections every 12 weeks but I have never had more than 6 or 7 weeks of relief. The last round in February did nothing. I would love to hear more on the plastic surgery option. Any insight on how to get into the Mayo Clinic? I can get a referral but would love to know the process.