542342 tn?1227528754

Last urgent MRI showed another one of these things

Ok, first of all I had a lot of pain in my neck (literally) so I saw a neuro and had my first MRI in 1991.  He had the results and showed me the MRI's of my c-spine.  First he told me that I had a buldging disc at level C 4-5 and I was very relieved until he saw that relief and stated quite compassionatly "that's not the problem we are concerned with...you have a glioma in your spinal cord  and no one would touch this with radiation or with surgery due to the severe consequences."  Okay.  I was referred to a team of neurosurgeons and was told with one holding my hand, with tears welling up in his eyes..."you may have as long as six months. We will try to make you as comfortable as possible and I will treat you as if you were a member of my own family."  Long story short- when I got worse and couldn't move my left hand, couldn't feel the bottom of my left foot, and my brain showed signs of "swelling" with what was possibly that the glioma had prevented the flow of CSF ... I was admitted into hospital immediately - started on solu-medrol and one surgeon in that team had experience in doing "laminectomy and intra-spinal cord micro-surgery" and opened up the cord, removed the 2 cm lesion.  He sent it to Mayo Clinic for pathology report.  A month later, it came back as a MS lesion.  Back then, if only 1 lesion was present - it was not deemed as multiple sclerosis.  Hah!
This past June (after losing my own mom to the same diseases I inherited: Crohn's and M.S.) I felt so much pain that I had be seen in hospital and yep... another MRI was done.  This one came back with such weird sounding results but I was open to them..."a parenchymal mass ON the cord located at C 6-7"  Spinal cord injury showed due to the surgery and the stenosis of the cord at that sight too.  Now I'm having to have another MRI (with contrast) to determine if it may be a tumor or a possible AVM.  
Either way, I already had done my medical proxy work during the same time I was helping my mother make her's.  I had and still opt for no more surgery...and if something is deadly... I have my best girl friend from high-school to  make sure that my wishes are carried out.  My dad of course is stunned and keeps saying..."don't give up -- if you do need surgery, you should go ahead for me"  I am wondering if anyone out there knows about this new thingie growing on my cord.  I have already had the blood tests for liver and kidney function just as a protocal my doctor follows since gadolinium is pretty dangerous for some people.  I explained to him that I've had MRI's since 1992 with and without contrast - he explained that my body may be different since the last one with contrast that was done in 2004,  

I'm not scared, but yes I am seeking some kind of answer so that I 'm more prepared for the possible outcome.
It's not been a good few years for me...only child - no children or siblings and an ex-husband ... trying to take care of my mother and trying to keep her in her own home as long as possible.  That started in early 2006 and she finally became so disabled by blindness and ataxia, I couldn't do all that I wanted ... she went into a nursing home in 1/27/2007 and died in hospice on 1/25/2008.  Maybe I'm seeing my own mortality from her swift progression into the abyss.  
OH I just just run on and on!  Could either one of the doc's here or someone who knows about my particular new findings.  I would be ever so grateful for your reading and answers or even just a little old "encouragement".  
Thank you.
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147426 tn?1317265632
You are always welcome back.  You are going through such a lot.  

First it astounds me that having found the lesion to be MS on biopsy, they would negate that just because no other lesions were visible - as if MRIs were that good then, but they probably thought they were.

Second, the danger of Gadolinium has been shown ONLY to be in people with moderate or severe renal failure.  If your kidney function is normal then the danger DOES NOT apply to you.  Since there is such a question I would encourage you to have the contrast.

Let us act as your support system.  Try to post every day until you get to know us ans we know you.  Or use your  journal to say stuff.  Being so alone you probably are not in the habit of routinely revealing yourself.  You have a lot on your plate and have clearly been through hard times.  I applaud your feeling that you are "ready," but hope that this is from deep thought and faith and not from a sense of futility and fatigue.

Please stay with us and just talk.  It's not the same as talking in person, but it can help you through hard times and heard decisions.  It has helped me.

Okay?  Will we see you around?


Momma Quix
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Avatar universal

Glad you came back to us, and I'm sorry so much has been happening to you.  

I can't give you an educated answer, but I can give you encouragement and support.  

Don't make any conclusions until all the tests are back and you know for sure. And always come here and talk to us, we're here to listen and support you through whatever happens.

I pray that your tests will reveal something not as drastic as you suspect, and you will have more time to spend with your dad.  I to was an only child and know how it feels to be so close to your parents.

Take care and let us know what's happening with you.  

Helpful - 0
542342 tn?1227528754
Thanks to everyone of you who offered encouragement and your support.  It's all so greatly appreciated.  As to how the prior surgery left me...I have a dividing line from head to toe on my left side that has hardly any feeling and I have to be very cautious when doing tasks even grasping objects from the microwave.  I don't feel the burn, but oh yep it happens. lol!  I was told by the neurosurgeon that this dividing of my body producing these weird conditions was from the surgery causing nerve damage.  
I am going to listen very closely to my options, whatever they be and heck they may not be are bad as the "unknown" (as all of you have found on the journey into this lovely thing called MS! haha...)
Once again, thank you for reading and replying with such warmth and wisdom.  

I'm here for all of you (I've been kind of Missing in Action on this site) so...
thanks again,
Helpful - 0
648910 tn?1290663083
First I am not a doctor I am here for the encouragement part of it.   I am so sorry you have been through so much, but it sounds as if you are a really strong person.  I know that strong ppl are often so tired they can't stand themselves but hide it well to protect those around them. I cannot on my worse day imagine being told I needed to prepare to die, then finding out it was a mistake.  Don't get me wrong I would grateful it was a mistake but really pi**ed that I had been but through that.  You say you do not have a support system, everyone needs someone to talk to.  Have you consider a counselor?  Just being able to tell him/her anything you want to without fear of judgment or them spreading it around can provide a mechanism for letting off the pressure.  Keeping everything to yourself can make you as sick as having a physical disease.  Just something to think about.

As to the medical stuff...if I understand it right you are preparing to have another MRI of your spinal cord.  If you were dx with MS and they had confirmed the one leison through surgery it would not be unreasonable for new lesions to occur. I did look up the definition of parenchymal mass.  If this is what the MRI showed I would at the very least listen to my options and the possible side effects before I made a decision.  I would get a second opinion.  Then the decision would be yours.

Whatever  happens we will be here for you, terry
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Avatar universal
My thoughts and prayers are with you.

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572651 tn?1530999357
Good morning, I am not a medical expert and reading your history leaves me a bit concerned.  After your initial surgery, how was the quality of your life, excluding taking care of your invalid mother?  As you list the lack of family other than your dad, you must feel very alone in making these decisions and I';m sorry for that.  

In consultation with your doctors, what prognosis do they give you if you would have this surgery done?  I can certainly understand your worry that you will end up like your mother, but that is not a definite prediction.  
someone more knowledgeable than me will be along here to give you some guidance, until then I wanted you to know I had seen your post and heard your concerns.

My heartfelt best to you, Lulu
Helpful - 0
494672 tn?1254152672
I do not have any knowledge re: your findings but the one thing I can do for you is send a big hug your way until someone with more knowledge jumps in here.  Take care of you & know that we care!  Janette un dx
Helpful - 0
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