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HPV Throat Cancer

Head & Neck Cancer | Last Active: 14 minutes ago | Replies (62)

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@justwow Hello, if it will be a help let me pass you my experience; I had radiotherapy all the way and rejected any intervention but as a result after 3 years i have developed Radiation Induced Bracial Plexus in other words I have lost the ability to use my arms.

During and after radiotherapy for some time I couldn't swallow, taste etc. but within the following 6 months I was over 80% recovered from everything until one day(3 years later) I started feeling tingling on my neck and within next 18 months I have lost the ability to use my arms. So there is no guarantee also for Radiotherapy, nevertheless I have been told that a cut can heal but for a burnt nerve there is no coming back; I really want to verify this with the doctor that has given you the heads up on this matter, if you could pass me his/her details I would like to get in touch with him/her because whenever I talk to a doctor about RIBP they seem to be surprised, I have never met a doctor that is aware of this side effect.

In short, if I would go back in time; initially I wouldn't like to go trough this but since it happened I would go for an intervention since the side effects are more or less proceeds the same way.

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Replies to "@justwow Hello, if it will be a help let me pass you my experience; I had..."

@burakb
@burakb
First, I am so, so sorry this has happened to you. Is there hope for regaining use of your arms? I pray there is!

Each time I think I’m brave enough to commit to the neck dissection, I end up greatly terrified. I read medical studies showing a very high percentage of people who undergone this surgery have shoulder pain, mobility issues, shoulder droop, winging, facial paralysis, lip droop… sure, *some of it gets better with time (12 to 18 months) but not all.

I thought about Proton therapy and its many side effects…. I’ll make it past the mouth sores. And losing my taste doesn’t bother me, it happened once before and lasted a year after taking medication for a fungal nail infection… the Dr said “don’t worry , it’s extremely rare for people to lose their taste”, and of course it happened to me 😮‍💨😂

And then I read your post and just cried - for you and for me…

My current doctor wants me to treat very very soon and not sit on this.

I know I have to do something

@burakb
May I ask where you were treated? Was it your neck?