New Spinal Cord Tumor Growth 10 years post op

[wintersmd]

Hi everyone.  10 years ago I was diagnosed with my little grape sized buddy on my left auditory nerve.  I had it removed at the Mayo Clinic in Rochester MN by Dr Michael Link and his team.  Just like most on here I lost hearing, balance issues, and headache pain, but was able to get back to my regular life after about 6 months.  Life was going great, enjoying retirement life, riding my bike, working in my little woodshop, watching football, Basketball, fishing, ect. I did have a few setbacks over the past couple of years, having fallen off my bike do to balance issues, but I solved that problem by selling my upright bike and buying a recumbent tadpole 3 wheel trike to ride (and I ride all over Iowa).  Life was really good, that was until last September.

I started having some back pain at night when sleeping and just figured it was my laziness and the need for a new mattress.  I went to the doctor and they sent me to a physical therapist and Chiropractor.  I went to them for a few months, getting treatments and working on stretching exercises but it never really go better.  I did not think much more about it thinking that maybe the years in the Army were worse on my back than I thought.  Then last Thursday, 22 Feb 2023, my wife took me to the emergency room with severe lower back pain.  This was the worse pain I have ever experienced, not being able to stand, sit, lay, walk and so on.  While in the hospital I received an MRI of my lower spine only to find a grape sized tumor on my spinal cord, not the spine itself but the cord.  HOLLY SH*T!!!!!!! (please excuse my language)  The doctor that diagnosed the tumor called it a MYXOPAPILLSARY EPENDYMOMA (sp?) So many feeling started rushing back to me from the day I found out about the acoustic neuroma. From my understanding, a myxopapillary Ependymoma is also a benign slow growing tumor similar to an Acoustic neuroma.

I have had a week to digest my situation, and starting the "Way forward plan" with my doctors.  I am trying to go back to the Mayo Clinic to get the tumor removed, but my question is this

Has anyone had any tumors that have reappeared in other parts of your body?  Is this common with AN tumors, or am I just one of the lucky ones that this happens to? 

Has anyone requested a full body scan to see if there are any other tumors that may be lurking in your body?  I have had the normal MRI scans (one last summer), but only on my head.  I think that if I would have had a full scan they may have been able to find the new tumor early enough than now. 

I am really curious if anyone else has happened to anyone on this site.  I try to keep people informed of what happens. 

Thanks for letting me share this. 

Mike

[rupert]

There  has been some research that says people who have NF 2 have a greater risk of developing this type of tumor.    Obviously having regular MRI’s you would be aware if you have  NF-2.    I have a relative that was having lower severe back pain and it turned out to be multiple myeloma, tumors that grow on the spine but are cancerous and numerous.    not a good situation.  I believe in your situation it can just be  removed and chances of living a long life are really good as they are not nearly as bad as some tumors on the spine.    I think your question about AN’s and relations to other tumors is something we all think about.    Actually a good thing to think about as we are constantly aware about things do to our AN’s and know when something up.   Early intervention is key to a lot of medical issues.

[wintersmd]

thanks for the reply Rupert!!  I am so sorry to hear about your relative that is batteling this issue, but in a selfish way glad to hear I may not be the only one going through this.  I never really gave much thought to getting full bpody scans to see if a tumor may appear in a different part of my body

[Cheryl R]

Those of us that have NF2 can have the bilateral ANs.     Am AN or some other benign brain tumors.       Or the spinal tumors.    You are now one to be considered with NF2.     This means closer watch for an AN or the other tumors and having other spinal tumors.       Since you did not have the bilateral ANs,spinal MRI was not considered for you,  It has to have been growing for a long time like the AN can do.      You will be  needing closer watch now for any other possible tumors in the future.     I had 2 ANs and a facial neuroma so am NF2.       Last surgery in 2008.    I personally go to Univ of Iowa for my wonderful care.      I am on 5 yr MRIs.       I am having some less hearing in my only hearing ear so did have a MRI this spring  with no new tumor.  Age now is catching up with me.            Now will be 3 yr MRIs.       Hearing aid time which have an appt to check out in a few days.
      My AN on the other side from my first did not show up till 2 yrs plus from the first.   The facial neuroma was 2 yrs past that.        I am not of the hereditary version of NF2 as sounds like you are not also.                            I hope this is it for more tumors for you.                                 Cheryl R

[Cheryl R]

I will add here that have had MRIs with contrast since 2001 and no issues.  Do have the blood work done prior to the MRI.
                                                                    Cheryl R