You've GOT to be Kidding me

**AmyBoz** · 07-11-2008, 03:20 PM

Okay, those of you who have been here awhile may remember that back in April, I had an infected lymph node removed from my neck and was diagnosed with Kikuchi Fujimoto disease. (It's ridiculous...seriously.)

Well, since the surgery, I've been having a lot of pain and loss of function in my right shoulder. The neck surgery was nowhere near the shoulder, but the shoulder problems began immediately following the surgery.

I spoke with the surgical oncologist and he said it was probably just my body overcompensating for the healing neck and that it was nothing. I said, "Okay."

Well, here we are in July and I still am having pain and even more loss of function. I'm not an athlete or anything, so it's not like it's impeding my performance or anything, but there are certain quality of life issues that are involved. On the lesser end, I can't grab things from the top shelf with my right arm. I can't take my shirt off by crossing my arms, grabbing the bottom of my shirt and pulling it over my head. I have to pull my arms in through the sleeves and then pull it over my head. On the higher end, I pick up my children, but when I do so, I see stars and when I put Matty in his crib at night, I literally almost drop him because I have no strength left in that shoulder.

So, my doctor referred me to an orthopedic surgeon today. (This particular practice is the team doctor for the NY Jets) I went today. She had me do all sorts of shoulder movements and arm movements while she watched my shoulder and back and put her hand on my while I did them to see what she could feel. Then, she sent me in for a few x-rays. When they came back, we had a talk.

She said that the x-rays are clear. There appears to be no structural damage. Good news. However, that is easily fixed. Bad news. She said I have something called "winging" when I raise my right arm over my head. I guess, normally, the scapula moves with your shoulder when you raise your arm. Mine separates from my shoulder when I raise my arm. She said this is generally consistent with nerve damage. She is thinking that during the first surgery, they may have either twisted or cut a nerve or two without even knowing it.

Also of major concern for her is that I am a righty and my right arm is significantly less strong than my left arm. She said that this should never be the case, and that the difference is alarming to her. She's worried that the body has determined that the nerves are no longer working and so the body is no longer taking care of that shoulder by sending it the nutrients and information that it needs to stay strong.

She's sending me for an MRI of my shoulder and a nerve study to see if there is any nerve damage. She said that she wasn't sure if this is what it was, but if the tests came back clean, then she was going to have this neurologist look at me who is some guru in sports medicine. She said that, all over the country, when doctors can't figure something out, they call this guy. So, first I get a rare disease and then I gotta see this guy? I feel like a patient on House!

So, we'll see what happens. I don't really care what it is. I just want it to be treated. I'm only 36 years old. I shouldn't have loss of ANYTHING, yet!

**COUNTRYBUMPKIN** · 07-11-2008, 03:39 PM

Sending you HUGS and keeping you in my prayers! Let us know how everything goes. You are so right.............far too young!

**StaceyS** · 07-11-2008, 03:42 PM

Hugs here too.

**Darlene** · 07-11-2008, 04:40 PM

Glad you found some docs that want to get you better. Sorry it's turning into such a long to-do.
That guy House is something else, lol. Just started watching.
Take good care Amy & hope your wing gets fixed & you're flying right soon.

**Ceashels** · 07-11-2008, 04:54 PM

Hugs to you. If it isn't contraindicated, ask for an occupational or physical therapy evaluation. You have lost function in your shoulder/arm and you need to be to be functional. They would also be able to use some modalities to reduce pain or lingering muscular problems caused by the position you were in while in surgery as well as strengthen some of the other muscles that will help give you better physical control.

**Mom23boys** · 07-11-2008, 05:06 PM

I am glad that you found someone who has some knowledge of what this could be and has someone with even more knowledge if need be. I agree - you are too young to be having a loss of strength right now. I hope they are able to help you. Sending good thoughts your way.

**Michelle** · 07-11-2008, 05:32 PM

**AmyMCGS** · 07-11-2008, 06:58 PM

Oh my! Sending prayers and hugs your way- and hoping they can fix this quickly.

And your comment about House made me laugh... that's one of my very favorite shows!

**missyali** · 07-11-2008, 07:07 PM

You have such a great outlook on things!! Sending(((((hugs)))))!

**Frugal Nurse** · 07-11-2008, 07:09 PM

Now is the time to call your lawyer.

Surgeons know where the nerves are - they are seen - they move them out of the way. They do not cut through them. If it's accidental - it's really called "negligence".

Occasionally, it does occur that the nerve gets stretched and irritated and will return to it's rightful place over time.
But just so you know.. if no improvement - lawyer.

just say'n - but what do I know anyway

**itsahumanzoo** · 07-11-2008, 07:13 PM

That is terrible! Luckily you finally found someone to take a look at it and help you out. Sending you some hugs and good wishes. You are definitely far too young to be having to go through this!

**MomToTwoBoys** · 07-11-2008, 08:41 PM

When I was in the Marines, I fell pretty hard and dislocated my shoulder. I was diagnosed finally with MDI and underwent two surgeries to correct my shoulder. I had everything from popping and locking, to grinding and tingling through my fingertips. My shoulder would also slip out of socket and dislocate. I could sit next to someone, gyrate my shoulder forwards and generate this popping sound that would gross you out.

Those surgeries were done in 2000 and 2001. The first one was done by a military doctor (who was an awesome guy) and then I was referred to an orthopaedic surgeon at the U of C in Chapel Hill for the second one. The doctor told me I'd need surgeries and care on it for the rest of my life, plus I wouldn't have as much mobility and strength in it as I did before I hurt it.

I was 22 back then.

I would get a really good orthopaedic doc and by the sounds of it, you do have one. I would have them do as many tests as they can administer. The shoulder is a really tricky part of your body and everything from your neck through your arms can be affected by something in your shoulder. I had to have part of my collarbone removed and alot done on my shoulder, and to this day, I can't sleep on it right and I lose alot of feeling in my right arm/shoulder. I can't button my bra by putting my arm behind my back and I can't bend at the waist to pick up anything.

It really sucks because I have the shoulder of someone twice my age.

Good luck with finding out what's wrong!