What is your understanding of 'late onset side effects' please?

Good evening, i personally think that 10 years is a long time for a side effect to appear, however, I'm not medically qualified, i would try and get a second opinion to clear the matter up then go from there. It sounds as if its a "we can't be bothered attitude ". My advice would get yourself checked again, good luck and all the best .

                                                                                                Chris 

Thank you very much for your kind words and what you have said is what I thought (about the length of time and the cant be bothered attitude). I will have to see someone else as this is too important to just forget about it because I am dizzy/off balance 24/7, its severely life affecting. 

You are welcome, you must do what you feel is best as you cannot live like this for the rest of your life, All the best, take care.

                                                                                             Chris 

Hi UsernameTaken, 

I’m so sorry to read your post 10 years post treatment.

Dizziness does feel pretty awful. I know it can be a late effect of treatment but 10 years seems like too far down the line. 

I'm about 15 months post treatment and I’ve suffered with dizziness throughout my recovery. It’s very debilitating so you have my total sympathy whatever the cause of yours.
I've had several suggestions and investigations about the cause of mine; initially I was treated as a vestibular issue which was easily remedied by a physio with exercises that improved my balance. but did not cure the fuzzy feeling in my head, More recently my GP suggested it was migraine, or stress and fatigue. I’m still not sure.

I’m trying to learn to live with it and manage daily tasks differently. 

I've read an article by Dr Brook that I’ll try and add to my reply. 

I hope yours can be resolved soon 

best wishes 

Carrie 

LIGHTHEADEDNESS, DIZZINESS, FAINTING, AND HEADACHES AFTER RADIATION TREATMENT (RT) OF HEAD AND NECK CANCER

Lightheadedness, dizziness, fainting, and headaches can be one of a late side effects of radiation of the head and neck. Damage to the peripheral and autonomic nervous system can lead to dizziness and sometimes fainting when standing up from a sitting or lying down, due to the development of low blood pressure (orthostatic hypotension). This can be prevented by standing up slowly, wearing of compression stockings, exercises and by keeping well hydrated. It is best to consult one’s physician to prevent and treat this condition.

Dizziness and lightheadedness can also be treated by physical therapy. This includes vestibular rehabilitation and exercises that stretches the fibrotic muscles, reduce neck stiffness, and increase the head and neck range of motion. One needs to perform these exercises throughout life to maintain good neck mobility.

Vestibular rehabilitation therapy is an exercise-based program designed to promote central nervous system compensation for inner ear deficits as well as misinformation sent to the brain from other parts of the body (eyes, skin, muscle, joints etc).

Muscle tightness and fibrosis can often serve as trigger of headaches which may eventually lead to migraine. Treatment of muscle fibrosis can often alleviate and reduce the frequency of such headaches.
Itzhak Brook MD
read more at the Laryngectomee Guide Expanded Edition http://bit.ly/2Si9TNm (FREE) or dribrook.blogspot.com/.../radiation-side-effects.html

Hi UsernameTaken

Yes, 10 years is a long time but according to The MacMillan Guide to Managing the Late Effects of Head and Neck Cancer Treatment "late effects are a delayed response to treatment.  They don't appear during treatment, but can happen months or even years later".  My oncologist warned me that there could be lifelong consequences of the treatment and that I should have regular checks with my GP for the rest of my life so they're not unheard of.

Have you seen your own GP to rule out any other causes for your dizziness and loss of balance?  It may not be related to your treatment.

I do hope you manage to get it sorted and wish you all the best.

Linda

Thank you very much for all that info Carrie. I may be deluding myself but I honestly dont think its late onset side effects of the radiotherapy, I think its a vestibular issue and as such I have made an appointment to see vestibular physiotherapist to see about some of those exercises you mention while I await another appointment to see

Thank you Linda. I got regular checks up until last year and then they discharged me (but I was fine at the time of discharge and had been since a few months after the cancer/radiotherapy).

Yes, ive been to the GP and she didnt know so thats why she referred me to the consultant (who said he thought it was late onset radiotherapy side effects). 

I was warned too that the consequences could be lifelong but the way it was explained to me that if something was going to happen (I was told possible deafness) it would occur during or soon after or within a year or 2 after treatment, not a really long time afterwards.

I wonder what the definition of 'years' later is in your quote above lol, it could mean anything. I assume 10 years is possible but I also assume 10 years is rare. 

Thank you very much for your kind wishes

Thanks for your reply UsernameTaken If you are right, which I hope you are, I can add that my vestibular rehabilitation exercises were very effective and I only needed 2 physio appointments. My balance was much improved after the first week  

I hope all goes well for you 

best wishes 

Thank you, that's great to hear. I hope that will be the case for me too

Carrie

Thanks very much for the link to the side effects blog

Two hours later and after much sidetracking I have finished reading it. There are quite a few useful snippets there.