Another Mountian to

By Rena Wednesday, June 06, 2012

     Last week (tuesday) after 8 years of cort. shots, carpul tunnel surgeries on both hands, ulnar nerve anterior submuscular transposition on my right arm (elbow) and ulnar nerve decompression in my left arm (elbow) and my hands arms not responding to all these treatments, a neurologist ordered MRI's of my neck and arms plus a referral to another specialist.  The MRI of my neck has found ground zero of all my arm/hand issues.  I have a large tumor in my spinal cord in my neck.  It extends from C8 to T1.  It has completely filled my internal vertebral cavity at these two vertebra.  This tumor also has a possible "tail" extending up to C4.  We will not know for sure until the surgeon gets into my spinal cord and sees for sure.  It could also be inflammation from the tumor.  It is hard to tell from the MRI's.   

     I have spent the last week really thinking this all through.  I have to have this surgery, due to the fact that this tumor will continue to grow and eventually cut off the use of my hands/arms.  I have what my hand surgeon calls severe muscle atrophy in my right hand and I have the "someone is hitting my funny bone with a hammer continuously" in my left arm causing constant pain from my elbow to my arm pit.  I am ready for this all to go away!  It has been a long 8 year struggle.

     According to my Neuro-surgeon, this is "very rare".  He says that he seens one of these cases about every 10+ years.  My Neurologist who found the tumor says that she has never found one and that I am the first.  I like to be original but...this is a bit to original for me.  LOL

     I have been researching this issue for a week now.  My neuro-surgeon spent 2.5 hours talking to me about it and the specifics of the surgery.  (How often does a Neuro-surgeon who is booked out 2+months, spend 2.5 hours talking to a patient?  I was very impressed by this.)  I am one of those people who wants to know everything about it.  I find it facinating really.  I now know exactly how he is going to perform the surgery and remove the tumor by going into the back of my neck, slicing the spinal cord opened and extracting the tumor small pieces at a time to minimize the risk of damaging my spinal cord.  I have discussed recovery time and requirements.  I feel more comfortable the more I know.  It is a way for me to get my mind around the task at hand.

     I have had 4 surgeries on both hands and elbows in the last 14 months.  These have all been to help me...to correct the issues I have going on in my hands and arms.  It has not helped that I also have rheumatoid arthritis, which has slowed my diagnosis process, as I have thought for the logest time, that these symptoms were just my RA.  Doctors are not gods.  The do the very best they can.  I like my primary MD, my rheumatoiogist, my neurologist and my hand/arm surgeon.  They can only diagnos the symtoms that I have and start with the most common diagnosis first and then work from there.  I don't blame them for not finding this sooner.  It was just circumstances.

V, Health Guide
6/ 6/12 9:34pm

Hello, Ms Rena,

 

I have been wondering what you have been up to, and now I see. My, my, my.  I always knew you were special!  Wink   It seems as though you have done your homework, and you are in good hands with your doctors.  I will be praying for you July 3rd.  You have a wonderful attitude, and I am so blessed to know you. You are a special lady.  You are right.  You can do this.

 

Peace be with you...........

 

V

6/ 7/12 2:44pm

     Thank you so much for posting.  You are so sweet.  I just wanted to post so everyone could learn from this, as I have.  I have been occupied with this for a while, and now I need to get this taken care of and get back on my feet.  I am hoping that removing this tumor will make me feel better than I have felt in 8 years.  Plus, then I can focus on my RA and be able to really see how my RA medications work and can actually help this time to make me feel better.

     Thanks again for posting V.  And thank you so much for writing here.  I may not always post a comment, but I always read your posts.  I learn so much from all of you who put in you valuable time posting.  You are very much appreciated!  Have a wonderful week.  :)

V, Health Guide
6/ 7/12 11:04pm

Thank you, Rena.  You take care of yourself and keep checking in, okay?  Will keep you in my prayers, sweet girl. Smile

 

Blessings,

V

6/ 9/12 5:09am

Thank you V.  You are the best!  :)

6/ 6/12 11:24pm

Just wanted to chime in to wish you the best. All that is just a little too special! I hope your surgery goes well and helps your hand and arm issues in the future. I'll be thinking of you and wishing you well!

6/ 7/12 2:50pm

     Thanks very much Leslie.  You are right, it is a "little bit to special".  I love to be original and unique, but this is over and above!  It will be so nice to have this issue finally taken care of.  I can't wait for the surgery to be over and be on the mend.  I think I will feel better than I have in years.  Upward and onward I say!

     Thanks again for posting.  Take care of you!  Have a great week.  :)

6/ 9/12 2:19am

i often think that a chronic illness muddies the waters which tends to cause doctors to attribute all symptoms to the original diagnosis.

 

at least you know now and your attitude will help you a lot

thinking and praying for you

6/ 9/12 5:11am

     Thank you wonderwoman.  I appreciate the reply alot.  The water sure has been muddy, but I think that now it will clear up and be better.  Take care of you.  :)

Lene Andersen, Health Guide
6/13/12 1:17pm

holy crap,. Rena! On one hand, I am so happy to hear that your doctors have found the source of your problem. When the other hand, I wish this was a much less intensive problem. it sounds as if you have an excellent neurosurgeon and that's making me feel a lot better about this whole thing (I can imagine that it would make you feel even better than that). One of the people who help me with my daily care had something that sounds sort of similar - her leg got weaker and weaker and she had to see several neurologists before she found one who kept looking for the cause ( instead of telling her that they were stress related???). In the end, he found a benign tumor on her spinal cord, she had surgery and rehab and is now back to normal. I don't know if that's helpful or irrelevant... Rehab may be more of a longer process for you due to your RA, but I'm sure you'll get there eventually.

 

When is the surgery? We need to know when we should be sending thoughts, prayers and healing vibes your way.

6/14/12 2:43pm

     Thanks for your reply Ms. Lene.  It always helps when I here from you.  It sounds like one of your people had a simular issue, just in a different location in their spine.  My tumor has grown from the inside of my spinal cord and I am now learning that I have been having symptoms of it being there for 8 years.   Pesky little thing!  LOL

     My sugery is now set for July 2nd.  It was previously scheduled for the 3rd.  I just found this out yesterday, along with the fact that the surgery may take up to 10 hours.  Holy Cow...my neurosurgeon is going to have to take a couple of coffee/tea break and a lunch!  

     I have a new tumor surgery theme song...It's The Climb, by Miley Cyrus.  Love that song.  It makes me feel powerful.  It is amasing how music can make you feel.

     I also wanted to say, I love your photos on your blog.  They make me smile.  I especially loved the horses, the dogs and you vibrating from excitment in the horse stables.  So cute!  :) 

     I have a next door neighbor dog who is a full grown of the welch corge you posted.  His name is Sammy.  My house is his second home.  Love him.  :) 

     I am rallying all things that make me happy for support, lately.  It must be a natural soothing mechanism.  Music, my little dogs and neighbor dog, sitting on my back patio, enjoying the birds, the fresh air, the sunshine, reading your blog/posts/this site sipping on an ice tea.  I never take the time to do this, but I should.  It is nice.  :)  If I feel attached to others like me, I feel so much better!  We all need to slow down, smell the roses, enjoythe day and remember that everyone is fighting a battle of some kind.

     Thanks so much for posting Lene.  You give me strenth.  :)

Lene Andersen, Health Guide
6/15/12 11:17am

I always wonder what surgeons do about potty breaks during long surgeries...

 

So good to hear that you're putting yourself first and identifying things that can help you feel stronger. Remember that after the surgery, too - and especially when you're getting closer to recovering. Sometimes, something really big has to happen in order for us to take a look at our lives and reassess how we want to spend it. This may be yours, so perhaps it's a blessing in disguise (or is that entirely to Pollyanna-ish?).

 

I'm here for you, as is the rest of our community. Please do let me know how you're doing.

 

 

 

 

6/15/12 12:15pm

You are absolutley right about making time for yourself and for what makes you happy.  I don't do this, but am learning this lesson now.  And...I love Pollyanna!  Thanks for replying.  Have a wondeful weekend!

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By Rena— Last Modified: 10/01/12, First Published: 06/06/12