Neck stiffness, pressure in head

Hi

im 9 weeks post radiotherapy to palate and neck. Had neck dissection December. 
is it usual to be so stiff!! My neck hurts pretty much all the time on any movement and i can feel it crunching when i move my neck and head. My head feels full like a pressure cooker !! Im deaf with terribly loud tinnitus in one ear. Its so debilitating. My head feel likes like it’s throbbing and doesn’t help because i can hear my heart bear in my ear. Is this usual and will it get better? So tired still and feel weak and wobbly. I feel like im getting worse not better. Anyone else experience this? 
thanks x

  • Good evening ER1, are you still seeing your consultant as you should not be feeling like this in my opinion, so i would recommend you phone the Maxillofacial Department (head and neck) for an appointment A.S.A.P. Its most probably something simple but its always best to get it checked, you should get a quick appointment due to your history. Especially with the tiredness and fatigue. wishing you all the best, take care.

                                                                                Chris x

    Its sometimes not easy but its worth it ! 

  • Thanks Chris 

    i have an appointment next Tuesday. Spoke to my GP yesterday and he said radiation sickness but dr Google says should be settling by now. I feel really sick and dizzy this morning 

    thank you 

    Elaine 

  • Hi Elaine Would go with Chris you need to see consultant. I would go with radiation fatigue can’t recall radiation sickness lasting this long. Hope you get something sorted soon. It’s all very debilitating,do you have a scan booked in for later ?if not ask them. How’s your blood pressure ?mine was erratic the first few months after treatment.
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Hi ER1

    I agree with Chris, please get an appointment and get checked over. I have had neck dissections at different times on both sides of my neck and radiotherapy both times and although my neck was a little stiff initially it was not for long and it healed fairly quickly although there are some ongoing changes in sensation. I was deaf in my left ear after my maxillectomy to that side but did not have tinnitus. My surgeon put in a grommet to drain the fluid and it fixed it in no time. I did feel weak and wobbly for a while after radiotherapy but after about 3 months had regained my energy and was pretty much managing everything I could before.

    Hope you get some results from your medical team to help with the issues you are experiencing.

    Lyn

    Sophie66

  • Thanks Hazel 

    no scans booked but do have appts pending. My BP is often on the lower side 95/ 60 

    I feel like inm in the last chapter of my life! Even though the surgery was curative :( 

    xx

  • Thanks Lyn

    thats good to know. I have an appointment next Tuesday so fingers crossed, i feel like theyve stiched my neck too tight lol and it’s straining the neck all over. Hope they sort something out. I was referred to ENT about my hearing and tinnitus to be told i had about a 5-6 months wait! I do have an ent appointment in august but i think thatz only because the oncology nurse who discharged me (and doesn’t know me) thought i needed follow up with ent rather than max fax ! So im keeping quiet about that one and fingers crossed ill get help. Feel i ant it now though, august seems so long away :( 

    thank you x

  • Hi ELaine  wonder if it’s lymphodema ? Just a thought. Are you swollen in neck area ? 
    I was extremely lucky no lymphodema in fact apart  from a little bit of fibrosis which I easily manage my necks fine. 
    Hugs Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Not sure theres a slight overhang of skin around my wound but ive lost a good amount of weight so more like “old lady sag” lol x

  • Oh bless you. Radiation fibrosis I can only describe cas a poker being in your neck mine is slight started  2 years after treatment don’t think yours is thst but worth asking tgrm to investigate  o both lymphodema snd fibrosis xc

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Cheers for that Hazel, 

    ive just been googling!! I do have a slightly squidgy chin and certainly some of my symptoms point towards that as a diagnosis. I have found a really good exercise video on massage for the neck and it actually feels quite nice. So im going to fo this as it wont hurt. 

    xx