Some Updates About Me Lately.

timreichhart
timreichhart Member Posts: 194
in Head and Neck Cancer #1
Hey All
I know I havent been posting on here as of late but just been dealing with doctors apts. I am still cancer free as of last fall but still dealing with some really nasty side effects from post cancer treatments. Like my light headness all the time and shoulder/neck problem and numbness in the legs/arms.

So today I finally went to see a neurologist after dealing with the light headness/shoulder/neck/numbness in the legs and arms for little over a year and that didnt turn out very well and the neurologist said that I could have a possible spinal injury from the radiation treatments since I had NPC (Nasopharyngeal carcinoma) and I was pretty much blasted in the neck and the head with IMRT so now I have to get MRI done on my brain and my spinal cord to see what is going on (which the MRI is going to be done next monday). The neurologist did some other testing like laying me down and checking how well I do with my light headness issue and turn's out that I might also have a blood pressure issue because when they was taking my blood pressure when I was laying down it was lower and when I got up it was way higher. So I also got to get a blood test done for B6/B12 deficiency issues. Let me tell you I wasnt 2 happy after seeing the neurologist.... I am so mad my radiation doctor for not telling me all the information like they post to.

For my lung issue like I was having before I seen the lung doctor and he said he cant see any other problems in the lungs but he thinks it can be a sinus issue so I have to wait and see my ENT doctor in 6months to see what they can do.


So my main question to everybody how much should I be worried about this possible spinal injury from radiation treatments? Bc I seen the searches on it that it can lead in to MS and down the road that I cant walk anymore.

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Hi Tim
    Its all a process. From diagnosis, through treatment and recovery. Its a process with many moving parts, and many possible stopping points, while we regroup and figure out where we're at, in order to go on as best we can.

    The treatements are severe. But then the disease they treat are fatal, if left uncheckeed. Many of us have to be pushed to the point of severe disability/ permanent loss of function in order that we can live. It is fortunate that we don't all have permanent severe complications, but that is what we risk at the outset.

    You are now back in the process. That process is to figure out these other health issues and make the best out of whatever is found. It will take some time and effort on your part, and that of your health-care team to get this right.

    Please be patient with yourself. Don't jump to conclusions regarding cause and effect, nor what your future may have in store. You may surprise yourself at the result that your prognosis turns out better than your current fears.

    MS and post radiation spinal cord injury are not the same thing at all. They have no relationshipto each other. MS is a diagnosis reached ONLY by excluding all other causes, so there is no way that you bear this label today. Spinal cord injury from radiation tends NOT to present with upper and lower limb defects, nor equal right and left sided effects in its onset. For NPC occasional spinal injuries are seen post radiation, but they tend to be injuries involving the spinal nerves, which effect head and neck, not the longer tracts that involve extremities.

    Metabolic problems tend to be what cause the types of symptoms you are exhibiting. So try to take each step in the workup as it comes, and frame no conclusions until they become obvious. Its hard, I know. It would have been wonderful to just cruise into the sunset after braving cancer therapy and not have to look back.

    Best wishes to you, brother.

    Pat
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
    another
    another blood issue to check would be vitamin D3 problem. they found by total accident that mine was on the low end of critical. once i was able to get it back up i felt a huge difference in several things. never know and worth a small price to check.

    i agree don't jump to conclusions, have fun while your doing your survivorship

    john
  • timreichhart
    timreichhart Member Posts: 194
    #4
    fisrpotpe said:

    another
    another blood issue to check would be vitamin D3 problem. they found by total accident that mine was on the low end of critical. once i was able to get it back up i felt a huge difference in several things. never know and worth a small price to check.

    i agree don't jump to conclusions, have fun while your doing your survivorship

    john

    Updates
    Alright after meeting with my neurologist he told me I might have a spinal cord injury from radiation treatment. I also have mild arthritis in the neck and my B6 and B12 count is good but they still dont know whats causing my light headiness either. When I had my MRI done they said my MRI of the brain was with in normal limits what ever that means and I also found out I have Right Sphenoid Sinus Mucous Retention Cyst so I have to wait until I see my neurologist on the 30th of this month to see what he wants to do. But most likely I am going have to contact my ENT doctor to get this: Right Sphenoid Sinus Mucous Retention Cyst removed to see if that is the problem causing my light headiness.

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