Hoping for a better year than last year.

By Rena Sunday, January 15, 2012

     I haven't done a share post in a while, so I thought I'd share.  I've been through a rough patch this last year.  I had carpul tunnel release surgeries on both hands which required me to stop my Enbrel for a while.  That caused a nice RA flare. 

     Then after years (5 to be exact) of my complants of pain in both my elbows, I started showing signs of severe muscle atrophy on my right hand and slight muscle atrophy/wasting in my left hand.  Up until now, my Rheumy as well as my Primary MD have told me it is "just my RA".  Both my arms hurt.  It feels like someone is hitting my funny bone with a hammer all the time.  The shooting, electrical shock type pain up my arm to my arm pit and down my arm to my ring and pinky fingers.

     After the visual signs started showing, my Rheumy referred me back to the Hand Surgeon who did my carpul tunnel surgeries.  To make a long story short, mmy Ulnar Nerves in my arm (often referred to as "the funny bone") are not fitting into the grooves in my elbows right.  My grooves are to shallow.  The ulnar nerves are pulled tight and across the bones at my elbow every time I bend my elbows.  This has caused my ulnar nerves to be smashed flat and frayed. 

     My surgeon says the ulnar nerves are very comparable to an outdoor electrical extention cord with lots of little electrical wires, each wrapped in a protective coating and then all wrapped inside another, thicker protective coating.  Mine, he said...just happened to look like it was run over by a truck multiple times, smashed flat and with the little wires all fraying out.

     My right arm surgery was on 12-2-11.  The official surgery name is:  Ulnar Nerve Anterior Submuscular Transpostion Surgery.  What a mouthful!  I had 30 staples, 25 interior stitches and a muscle group that was cut in two sutured back together.  The muscles had to be cut in order to relocate the ulnar nerve to the inside of my arm in a safe and well oxygenated area   I just got released from wearing a brace on my right arm this last Friday, 6 weeks post-op.  The muscles are 80% healed at 6 weeks.  I have started physical therapy, thank goodness.  It feels good to be able to move my right arm again.  The shooting, not funny bone pain is gone in my right arm.

     The left arm is still constantly shooting pain and shredding my nerves.  The surgery is scheduled for my left arm on 1-23-12.  I am ready to get it  over with!!!!  I think that 2012 will be much better as soon as I have this final surgery and I can start taking my Humira.  I had to stop my Enbrel in September due to side effects (increased pain, stiffness and fatugue as well as red rashed under my eyes).  I am set to start my Humira as soon as I am done with this last surgery. 

1/16/12 2:10am

Wow, that is a lot of nasty stuff. I'm also in a lot of bad stuff at present, I hope that your second surgery goes well and you can get your other stuff under control.

 

Hang in there you have friends onlineCool

1/17/12 2:35pm

     Thanks a bunch.  Be safe and take care of you.  Hope 2012 is better for both of us.  :)

V, Health Guide
1/16/12 8:21am

Hi, Rena,

 

You have really had a "rough" spot, as you called it!  I am overwhelmed just reading your post. So sorry, honey. BUT, you have one more surgery to go and then back on your meds, and hopefully a much better year in 2012.  Things will get better, Rena. 

 

Hugs,

V

1/17/12 2:38pm

     Thanks V.  I'm just going to work on keeping my chin up.  Take care and keep posting.  It helps.  Take care of you.  :)

Lene Andersen, Health Guide
1/16/12 11:07am

whoa, Nellie! you have had one hard year. I'm very happy that you gave us an update - I've been missing you around here.

 

Nothing upsets me more than doctors not listening to their patients and dismissing the symptoms that you've been reporting as "just RA" is unacceptable. I'm glad you have a good surgeon who can help you, but when all of this is over, you might want to consider finding a rheumatologist who takes you seriously. Of course, after this experience your current rheumatologist might just take everything you say seriously from now on...

 

thank you also for telling us about the ulnar nerve surgery. That's really importantinformation and I'll be keeping the link to your post in my reference file - I think I may come across this issue again.

 

Good luck on your next surgery! Looking forward to hearing more from you after you heal.

1/17/12 2:55pm

     Thank you Lene!  I am looking for another Rheumatologist, but here in Idaho, they are few and far between.  There is another one close to me, but patient opinions are much worse than the Rheumy I have now.  My other options are 3+hours away.  It would be so nice to have a doctor that listened.

     I am going to try really hard to stay connected here.  Keep posting Lene.  You always keep us all positive and helping ourselves and that is the best medicine.  Take care.  :) 

Lene Andersen, Health Guide
1/17/12 2:59pm

when I was thinking of switching, I went to see someone else to see how we fit and ultimately, decided to stay with the rheumatologist I had. Would it be possible for you to arrange a time to meet this other doctor, just to check things out? Or do you think there might be room to "train" your current rheumatologist? Check out my post on self advocacy for tips.

 

I'm glad to see you back here.

1/17/12 3:08pm

     You are right.  It wouldn't hurt to just check it out.  Also, there could be room to get a better doctor/patient relationship going.  I could do a better job in this department.  I need to work on being more active in the relationship and not as passive.  That is a good and constructive thing for me to work on this year as well.  It's my job to manage my RA and my health!  I need to improve on that.  Thanks Lene.   ;) 

Lene Andersen, Health Guide
3/12/12 11:51am

very few doctors are perfect from the word go. When you think about it, no relationship in your life started out perfect - you have to get to know each other and sort of bulk of the rough edges and that can take a while. We often have really high expectations of our doctors and yes, they do get paid to do the job and hopefully, it includes an ability to establish rapport with their patients, but at the end of the day, they are just human and therefore imperfect. The best you can hope for is that they're open to being "trained." Wink

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By Rena— Last Modified: 07/24/12, First Published: 01/15/12