Do late effects of sinus radiation contribute to TBI/concussion?

Hello @ponygirlnd, I had radiation directed at base of one ear for SCC 13 years ago at University of Michigan. The old radiation oncologist (head and neck specialist) at the time said I would have some memory loss as the primary brain injury from the photon radiation to certain areas affected. At the age of 72 it is hard to know what was radiation and what may be just age. New radiation "gifts" this year are neck fibrosis and facial and neck muscle atrophy, which I am addressing with my Mayo team next week. Since my surgery involved removal of much of the temporal bone of the skull, dizziness and balance were a big challenge back then. The medical staff....mostly the great nurses.....kept telling me that we can retrain the brain, create new pathways, and cause improvement. Nerve tissue is slow to heal though, and it took time, but by challenging myself physically I have overcome many of the issues. I don't know if you have had any therapy or had discussions with your medical team about this because we can lose touch with them over the years, but can you pursue it? I also recommend reading about Lion's Mane mushrooms for nerve growth and repair. I think that supplement has helped me.

ThankYou Sue! What a gift that someone has responded.I did not have any rehabilitative follow up. My cancer was treated at Dana Harbor Institute in Boston and I live on the northern Canadian border of Maine so it is quite a trip and thank God for angel flights. I am a retired equine learning facilitator and do ride so balance is only part of the issue not all of it however I have been falling off horses all my life so I do have some TBI/post concussion and I believe that the radiation has made that worse with scarring and other factors. I am 71 now and stay as active as possible, but have downsized to two horses and a cat in a small house from 12 horses and ponies and six kids in a big old house. Pain is a huge issue. Chronic pain which there is no understanding of TBI and related issues in this area. I traveled to Minnetonka Minnesota to the functional neurology center for some diagnostics and rehab and still do my homework which is painful to my eyes, but I do what I can do. I started having TBI issues of flooding about six years after my cancer and radiation. This was well before any significant head injury and includes hyperacusis. Great website in Canada: nbia.com has some nice videos that I couldn’t relate to at the time and help family understand what I was going through. Meanwhile, getting old it doesn’t work lol doctors just keep telling me to keep doing what I’m doing now; caring for a little farm with two horses and riding whenever possible with friends that come by. Outdoors is my medicine and volunteer work as well. I guess there is no cure for surviving cancer treatments? But I am sure so many people live with greater burdens. Will check out the mushrooms, don’t forget the beet root!

Started having TBI symptoms 6years after sinus rad. Had head injury after

Hi @ponygirlnd, I see with this recent post, you continue on your quest for answers and support. I have merged the 3 related discussions into one discussion so you can see the helpful replies you've received from several members like @hrhwilliam @sepdvm @mojo244 and @jw9. You can read them from the beginning here:

- Do late effects of sinus radiation contribute to TBI/concussion symptoms? https://connect.mayoclinic.org/discussion/does-late-effects-of-radiation-contribute-to-tbi/

I appreciate your sharing more of your story in this post https://connect.mayoclinic.org/comment/1515477/

@hrhwilliam will also be interested to learn that you are a retired equine learning facilitator.

@ponygirlnd, can you share a bit more what TBI flooding looks or feels like for you? What helps you when this happens?

My radiation for maxillary and ethmoid sinus cancer, after surgeries, was in late 2006. First thing my smelling glands were scarred over so I lost my sense of smell completely. Then dry eyes was causing migraines so I use Restasis eye drops daily forever. Then osteoradionecrosis was at work and I had several teeth removed after hyperbarics. Later I had more teeth removed and wear dentures and partials when I go out now. I started feeling the effects of flooding with hyperacusis more sensitive to the side of my surgeries and radiation in 2012. Flooding is like walking into a room where there’s a radio playing and two people talking and feeling like you are in Grand Central Station during rush-hour being run over by a train. I found a Canadian website which had some very nice videos explaining. http://www.nbia.ca it is the Northern brain injury association in Western Canada. When I mentioned flooding to my doctor back then he thought that only happened when there was too much rain. Obvious I don’t have a lot of TBI support in this area of very Northern Maine.
Horses: well, I have been passionate about horses since I was six and finally got to own one in my 20s(now71) when after teaching beginning writing lessons and 4-H with my own family, I started the therapeutic work with them in the early 90s. The most meaningful part of my life has been using my passion to help others. I have been blessed to be able to work with people of all types from nonverbal autistic toddlers still in diapers and their families through kids and families and teens and adults and even veterans with PTSD. Some of the most remarkable results are with traumatized children, in foster care, but I am very amazed at people who have just stopped in with their family for an hour’s visit and written me back at Christmas to say how much an experience they had changed their life for the better. Most of Equine assisted psychotherapy is done unmounted. I am an educator not a clinician so over here it is Equine assisted learning philosophy. my mantra is that you can disable someone quickly by doing something for them that they can figure out for themselves. I am mostly retired from this now and a few clients come back as friends to visit or ride in the woods together. I have to say I’m clumsy, and my balance is poor and would be a lot worse if I did not ride horses bareback most of my life. The two that I still have are a blessing as they work on me to set me straight when I am not thinking the way I should. I could talk God and horses with anyone even when they stop listening! (EAP is based on the fact that a horse is intuitive. Radar built into them for survival is good for over 5 miles on a calm day. They will even sense the emotions of something or someone coming from a distanceand will often, most of the time, let you know how your behaviors and emotions are affecting you and those around you when they are with you… Even though stuff you’re trying to hide lol true!)
Did I answer everyone’s questions? Now onto the other links that you shared or is this all one one feed? Please feel free to write again. I will look forward to it. PS: I also recommend the Functional Neurology Center in Minnetonka MN. TheFNC.com

@hrhwilliam
OK, my surgeries for maxillary-and ethmoid cancer followed by radiation for six weeks was in late 2006. This scarred my smelling glands so I have no sense of smell now. Then dry eyes set in and migraines so I use Restasis eye drops for the rest of my life. Then osteoradionecrosis meant the loss of teeth after hyperbarics. Dentures and partials when I leave the house. In 2012 I started having issues of what I now called flooding. This can be seen in videos on the Northern brain injury association website in Canada. (www.nbia.ca) and I thought I was having some symptoms of hyperacusis also. Many ENT‘s will try to tell you it is caused by mental health issues when actually it is damaged to the inner ear caused by surgeries or trauma, etc. We do not have support services where I live and remote Northern, Maine. I did travel to the functional neurology center (www.theFNC.com) Minnetonka, Minnesota for diagnostic treatment and homework for TBI/post concussion because I have been falling off horses most of my life also. As an equine assisted learning facilitator I noticed my patience a bit short with people around 2016 and attributed that to TBI? Thankfully I still have two horses that keep me busy and balanced emotionally and spiritually. I am sorry to hear about your memory issues. At 71 I do repeat a lot, but still sit on a horse whenever possible venture out into the woods to help my physical balance and prayer time.

@ponygirlnd Small world. In the 70’s I lived on Fort street in Caribou. Had my horse at a farm just north of town. You are correct in the fact that the nearest good health care is likely Portland or Boston. Not very convenient.
At times folks end up with health issues that the doctors have no clue. And rather than admitting they have no clue, they put the blame on you. My wife has MS and there are times we are astounded by the ignorance of professionals who claim to understand what MS actually is.
As for you, since you know how to get to Minnesota, perhaps you could get a referral to the Mayo Clinic and have those wizards give it a go. As they say in Skowhegan, they are wicked smart.
I’m not trying to sell you on anything or any place but Mayo looks at healthcare from the patients point of view. It is healthcare like I have found nowhere else.
I hope you have a favorite horse that connects with you enough to comfort you. If you lose patience doing EAL, that’s not good for you, the horses, or the student/patient.
For some reason I am imagining you riding a chestnut horse along the cliffs by Calais. I hope you find what you need.

@sepdvm
There is so much in your post that is helpful to others. I had to reply because I also talk about "radiation gifts"! We have to keep finding humor! Because all that you talk about that is loss and/or healing takes work. I had surgery and radiation 30 years ago and have daily talks with those gifts. I also have neck fibrosis and facial and neck muscle atrophy. Just today I noticed in a picture that my face/mouth droops which is new. Tomorrow I'll schedule an appointment with my ENT.
Honestly, I never thought I'd get so much from this particular support group but it's been good for me to identify these ongoing changes from radiation.

@mojo244 try traction for neck spasm headaches (Botox for migraines is toxic)

@ponygirlnd nothing seems to help. My damage is twofold, radiation and toxic water from Camp Lejuene.
I have cervical dystonia as well which makes for other problems too 🤷‍♂️