Treatment Options > Radiation / Radiosurgery

Side effects after proton beam radiotherapy

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kantera:
Hi. Just completing proton beam RT at Mass Gen for a growing 1.8 cm AN. Have significant vertigo but no hearing loss. I️ have now developed facial nerve issues and trigeminal neuralgia. My vertigo had been improving but is worse again since RT. The dr says the facial nerve stuff will improve and if the trigeminal nerve issues worsen I️ can start tegretol which I️ really don’t want to do. Does anyone have experiences with how long they had nerve issues after completing proton beam RT?

KeepSmiling:
I am sorry to see you have had nerve issues. My husband had a somewhat smaller AN and he had none. I hope you feel better soon.

notaclone13:
Hi Kantera,
So sorry to hear you are having some problems after proton therapy. Vertigo is definitely upsetting. I have had some very bad episodes in the past due to a problem unrelated to AN. I have found a low dose of clonazepam (brand name Klonopin) to be helpful as it is a vestibular suppressant. It has a longer half life than Valium so it doesn’t wear off quickly. Another forum member with vertigo has found  Orphenadrine to be very helpful. That comes in an extended release form that does not make him sleepy. Has your doctor given you anything to help with that issue? I have heard that the facial nerve is relatively resilient and will recover with time. Many on the forum have had transient issues with the facial nerve after radiation and have experienced improvement with tegretol. All forms of RT,  whether delivered by CyberKnife, GammaKnife or proton beam are complex medical procedures. The healthy tissue will need time to recover.  Please continue to post as you recover to let us know how you are doing.

JLR:
Hello I had Trigeminal Neurslgia 5 years after Cyberknife. The Tegetol worked great for a few months. But the tumor was still growing and leaning on the nerve root causing the pain.  Had surgery 2016. I now have facial issues.  And now this is odd... I always had a slight wave with my hair but it overnight recently became curly. I mean tight curls. Anyone have same problem.

Freelander:
Thank you for posting this, as there are few messages relative to the experiences of people who have had proton therapy for their AN.  I  recently met with a doctor at MGH who stated that proton therapy is supposed to reduce impacts to the facial nerve, compared to photon radiation due to the low daily dose of 1.8 gray.    Did your doctor say whether your facial symptoms are common or unusual so soon after treatment?   And what did s/he say about the worsening vertigo?  Knowing that your hearing was unaffected has to be reassuring.

I hope these symptoms quickly disappear and you start feeling better soon.

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