1. < Head & Neck Cancer

Possible nerve damage from head radiation

Posted by psgstl @psgstl, Dec 20 9:37am

At age 60 in 2010, I was diagnosed with a spindle-cell squamous carcinoma on my right temple. After 5 stages of MOHS which did not remove the tumor, dermatologist referred me to ENT surgeon. After 7 hr parotidectomy, I received 8 wks of max dosage radiation. In 2016, I had sinus surgery due to side effects. In 2017, rejected for right lower dental implant due to bone deterioration. In 2018, diagnosed with radiation-induced carotid stenosis on right side, which shortly became totally occluded. Over past 18 months, I have been experiencing daily imbalance and difficultly walking with normal gait. Two weeks ago, I had comprehensive vestibular system evaluation and everything checked out...no indication of any radiation effect. Now considering neurologist evaluation. Anyone experienced something similar? Comments? Thank you.

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jcl2018 | @jcl2018 | Dec 20 5:17pm

I was treated for tonsil cancer is 2008. I had 33 radiation and 6 chemo treatments.

While I don't have carotid stenosis, I have arthritis and nerve damage in my neck, which primarily affects my arms and cheek. I also have a number of other radiation induced side effects.

I attached a research paper I found a few years ago. In the table you will see commentary on neurological damage. The one thing all of us long term survivors have in common are side effects which vary from person to person based on the cancer location and treatment. If nothing else, hopefully the paper helps provide some information/potential answers.

Shared files

Radiation Oncology - Brook (Radiation-Oncology-Brook.pdf)

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1 reply
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Dec 20 5:21pm

Hi @psgstl and welcome to the Head and Neck cancer group. Radiation is the gift that keeps on giving. While I have had osteoradionecrosis (bone death due to radiation) of the left mandible, I was fortunate enough to have a section of the mandible replaced with a bone and tissue transplant from my leg. Not sure if this is an option for you at this point.
It also seems that you are having other issues as well and whether or not this is related to radiation or some age factor. It probably wouldn't hurt to find a good research hospital or clinic and get a full neurological evaluation as to what is going on with you. In the meantime it is great that you hopped on this train and started a discussion which might possibly bring others with similar experience into the conversation. One never knows who or where someone has gone down this road prior. Having cancer is like crossing over a cold mountain with a mean horse, an experience like no other that you would rather have never had and can never really fully explain to others the trip.
Welcome and as I often say, "Courage."

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psgstl | @psgstl | Dec 20 8:21pm

Thank you for your commentary. I went ahead and got on the neurology wait list, not knowing outcome of vestibular system evaluation.
Fortunately, here in St Louis I live only 5 min from the Barnes/Wash U medical complex where I
have been treated since 2005, starting with kidney transplant. The immunosuppressants caused
first cancers to appear in less than 12 months. Blessed with the health I have after almost 20 yrs.
Thank you again for your contribution.

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psgstl | @psgstl | Dec 20 8:48pm
In reply to @jcl2018 "I was treated for tonsil cancer is 2008. I had 33 radiation and 6 chemo treatments...." + (show)
@jcl2018

I was treated for tonsil cancer is 2008. I had 33 radiation and 6 chemo treatments.

While I don't have carotid stenosis, I have arthritis and nerve damage in my neck, which primarily affects my arms and cheek. I also have a number of other radiation induced side effects.

I attached a research paper I found a few years ago. In the table you will see commentary on neurological damage. The one thing all of us long term survivors have in common are side effects which vary from person to person based on the cancer location and treatment. If nothing else, hopefully the paper helps provide some information/potential answers.

Jump to this post

Thank you for your comments and the article. Because of the carotid stenosis,
I felt sure there was some damage in the vestibular system. Just now starting research on possible neurological affects, so I expect the article to be quite helpful. The wait list to see neurologist here is 4 months. This all started with a kidney transplant in 2005 and skin cancers from the immunosuppressants showed up within 12 months. After almost 20 years, I am grateful for the health I have and access to first-class medical care. Thank you again for taking the time to reply.

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1 reply
jcl2018 | @jcl2018 | Dec 21 4:34am
In reply to @psgstl "Thank you for your comments and the article. Because of the carotid stenosis, I felt sure..." + (show)
@psgstl

Thank you for your comments and the article. Because of the carotid stenosis,
I felt sure there was some damage in the vestibular system. Just now starting research on possible neurological affects, so I expect the article to be quite helpful. The wait list to see neurologist here is 4 months. This all started with a kidney transplant in 2005 and skin cancers from the immunosuppressants showed up within 12 months. After almost 20 years, I am grateful for the health I have and access to first-class medical care. Thank you again for taking the time to reply.

Jump to this post

Best wishes as you address your issues. As WIlliam (mentor) noted, it becomes hard to distinguish what is treatment related and what is age related. As you stated to anyone who read your note, be grateful for the years we've been given and continue to address what comes our way.

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