Happy New Year

Trying something a little different... a video blog entry!!

Yeah, I couldn't figure out how to imbed my video...

Wow. My hair is getting really long. Now you get to see my face and hear my voice for once. :)

Wrist Appointment

Well, it didn't go as well as I had hoped... my wrist still isn't fused. The carpals are all meshing together nicely, but the actual wrist (where my hand attaches to my forearm) still has a bit of a gap. I'm having it rechecked in 2 months. If it STILL isn't fused by that time, then we'll probably have to inject the wrist space with more "bone graft material" and see how it goes. I mentioned that I was having a great deal of discomfort lately, and she suggested I continue to do my own hand therapy, but keep lifting things with my left hand to a minimum. Lifting things might be causing little microscopic tears where those last 2 bones won't fuse, prolonging my healing. So I have to cut it's use waaaaaaay back.

 

Sucks, but it is what it is.

 

I'm trying not to feel disappointed and defeated, but it's hard. We are 2 months post-op and I STILL can't use my hand. It's just a little discouraging.

Post Op Appt

Just got in from my latest post op appointment with Dr Rohde. Have I mentioned how much I like her? Cuz I do. She gets my weird humor and gives it to me straight. My kinda Doctor!

Today I actually asked if I could have copies of my xrays and asked if I had her permission to use her name in this little blog o' mine. She gave an enthusiastic "yes!" and even asked for the URL. So if you're reading, Doc, "hi!"

It was a pretty straight forward appointment. Cast cut off, arm xrayed, follow up with the doctor. Its not quite where she wants to see it, so the cast is ace bandaged back on until I can get it splinted. She had suggested using one of my old ones... but they all have a bend in the wrist, and I no longer do. So custom splint it is!

I popped over to hands/OT after my appointment and gave them my script and scheduled my appointment for tomorrow. Then I will be FREE from this cast! YIPPEE!!!!

So progress is being made and I'm a happier camper than I was the other day. Pain still sucks, but it's gradually getting better.

Here's my show and tell moment!

Alrighty, first set of x-rays are pre-op (before my surgery). I was nice and put the left on the left side, and the right on the right side. SO! The right side is a fairly normal/healthy wrist. The left side is pretty jacked up. From the side you can see how my metatarsals (hand bones) are not lined up with my radius and ulna (forearm bones). There is a definite disconnect when you compare them side by side.

The dysfunction is even more obvious looking from the top down. Look at my right hand. You can see all my little carpals (wrist bones) lined up nice and pretty. Then look at the left - they are all over the place! Some are even up on top of the others! Definitely not quite right...

And here we have it... The postop (after surgery) final product. This is my wrist. My hardware. My plate and 8 screws. My hand is crazy atrophied (where the muscle shrinks away from disuse), so it is super skinny. My middle finger metatarsal is also slightly crooked to the left, so it gives my hand a slight bend to the outside... but I suspect as I build the muscle back up in my hand, it will flesh out and not be so noticeable.

There you have it, folks. I'll post pics tomorrow if my splint is finished.

Post Op - 2 weeks

Here we are, 2 weeks post op.

I'll be completely frank. This surgery SUCKED. Pain management was really an issue for the first 5 days... but everything is under control and I am completely off prescription pain medications. Yay. There were several nights tho that I really was having a hard time... I feel very lucky that I had one of my best guy friends to talk to at 3am on several occasions, otherwise I may have gone mad.

So this begins my journey of learning how to use my arm/hand all over again. Everything is going to be different on that side... Everything.

Heres a couple pictures for those who are curious. If not, scroll quick. ;)

Shortly after surgery. Very swollen and uncomfortable. 

11 days post op - bandages come off and incision is revealed. Its lovely!

Detail of incision. Internal sutures and dermabond (skin adhesive glue)

I went with a nice black cast this time... Black goes with everything and is slimming, right? ;)

As for the actual surgery... Doc said it was "jacked up" in there, and she feels 100% confident this was the best choice. I'm also her youngest wrist fusion to date. I asked if that earned me a metal... "Why yes," she said. "Its in your arm!"

Very clever... ;D

I was missing cartilage in some spots, had mutating cartilage in others... it was just a mess. Now it will be so much better!


OH! I've also started the application process for disability. No clue how that will pan out, but I gotta give it a try.

Another Surgery?

Saw the Orth. Dr today. They took x-rays of both my wrists. The right one looks good - I have a pinched nerve from sleeping on the couch with my arm curled under me. I just have to sleep with it straight and it should clear up.

 

My left hand is a whole other story. She said the xrays were "ugly." The carpal bones are all twisted around and not sitting right. One of the bones that is supposed to sit in a little "socket" isn't even close. SHOCKER! But she said my options are few. Either leave it alone, or fuse the wrist. If we leave it, the wrist will remain unstable and will cause me pain for the rest of my life. It's not going to "get better" on it's own. It just is what it is. With the surgery, my wrist will be ridged, and basically stuck in the same position as when I wear my wrist brace. So I'll still be able to flip my hand over, type, etc... I just won't be able to flop my hand up and down (which I currently can't do anyways).

 

The surgery would be pretty brutal. Longer incision and some permanent hardware. They would strip all of my cartilage off my wrist bones and break a couple to promote bone growth. Then they would all just grow together. It would be similar to the first wrist surgery as far as post-op. It would be out patient and I would have another pain pump post op. Cast for 6-8 weeks and that's it.

 

Maybe I'm crazy, but I'm leaning towards surgery, and sooner as opposed to later. I know it would be another summer in a cast, but with the fusion, I should be able to be WAY more hands on with the kids - as I won't be guarding that wrist and my pain will become zero after the bones heal.

 

Decisions Decisions...

Finger Splints pt II

Got the rest of my knuckles measured for my finger splints. Now the battle begins to get them ordered/paid for by my insurance company. I have a back up plan if that doesnt work out, but I would rather not go down that road. So fingers gently crossed for insurance coverage. Orthopaed is 100% in support of the splints and said she will write the prescription for them. I may have picture updates in a couple weeks of my newly splinted fingers!

She has also given me the recommendation of a couple other rheumatologists whom she feels would be more appropriate. One of which is the same name that my moms PCP recommended (the same PCP I'm meeting with on tuesday!). I'll give this new guy a call and see what he says. Hoping he's more supportive and less of a shit than the last one.

Told both the PT and the ladies in OT about my verbal boxing match with poopy-rheum. They were all so proud of me for speaking up and not settling. I'm pretty proud of me too. :)



I also talked with the PT a bit today about the different types of Ehlers Danlos. She suspects I may have type I or type II, in addition to hypermobility type, but as she's not an MD, she can't diagnose me (which I knew, its just been nice to pick someone elses brain who knows a lot about it!). I think I'll do a couple posts on just the different types, just for knowledge sake.

Stalemate...

I had an appointment with the surgeon this morning and it appears we have reached a stalemate. My surgery has basically undone itself already (damn) and she said it would be pointless to attempt another soft tissue reconstruction as my body would just tear it all apart again anyways. She said she wants to wait to see what the rheumatologist says on Thursday before we move forward. She is hoping they will put me on some kind of "biological medication" that will slow down my body's tendency to attack itself. After we get that figured out, we can move forward. Otherwise, she said she would have to fuse the bones in my wrist, and I would basically have to decide what motions I would be willing to give up: either flipping my hand over, or extension/flexion of the wrist.

Not exactly what I wanted to hear, by any means.

SO! Now is as good a time as any to get me back on track from the inside out. To see what I can help/reverse by taking care of myself and really pushing my family to accept the nutritional changes I want to see happen. When the surgeon said "biological medicine" a little trumpet went off in my brain - I can affect my biology through diet. Now, thats not to say that I will refuse medication. I'm falling apart - literally. I need to get that crap under control NOW. But I also know that once I get on a medication to stabilize my weirdness, I may be able to wean myself off should I also get all of the shit out of my diet too. Heal myself from the inside out.

Its worth a shot. It certainly couldn't get much worse...

Ooo! Pretty!

Well, my cast came off this morning. I forget how painful moving joints post-op after they have been immobilized is! Yeeouch! I'm taking it easy until I can get in to see an occupational therapist. And now that the cast is off, I can schedule my physical therapy too. I see the rheumatologist again on the 24th of October, so I'll probaby get lab results and what not then.

So here's my wrist post op... the incisions really arent bad and they will heal up lovely!

back of wrist: tendon repair and scope

palm of hand: nerve release

I still have zero feeling in my armpit from the nerve block and pain pump, but that may (or may not) come back in its own sweet time.

My hand looks so skinny in that picture... LOL! Gotta love atrophe!

Joint Insta-what-now?

Ok, here's the low-down on me.

I'm 32 years old, female, 176lbs, have 2 small children, an annoying husband and we eat like crap. I know, not exactly "healthy." I've been battling dislocating body parts since I was 11. Mostly it's my kneecaps that blow, but I had my left knee reconstructed back in 2003. My hands and fingers are hypermobile as well. All was well until 2007. That is when I had my first baby and all hell broke loose. I essentially undid my surgery with all the fun pregnancy hormones that make your connective tissues go wonky (relaxin, to be more specific). Then in 2009 I had another baby. 18 months apart. WHEW! More wreckage as now I have diastasis too (seperation of the abdominal wall, giving me that always pregnant appearance. HOT).

In 2010 I started to notice something wasn't "right." Moreso than just my wonky joints. I was tired. REEEEEEEEEEALLY tired. All the time. I went to an internist. He thought I might have sleep apnea and sent me to a pulmonologist. Then that jerk of a doctor said "Um, maybe you're tired because you have 2 small children at home..." Gee, thanks. So I let it go.

February 29, 2012. I dislocated my forearm and part of my hand... by taking towels out of the dryer. Clearly this was bad news... Went to an orthopaedic and was put in a cast for 8 weeks. Cast came off and... hmm... somethings wrong with my hand. Sent to a hand specialist! She schedules me for surgery and strongly urges me to see a rheumatologist. I heed her advice and one week after my hand surgery, I am in to see the rheum. He is the one who hands me the mystery diagnosis of Joint Instability Syndrome. Oh, I also have Fibromyalgia to boot. Not to mention having an abnormal ANA blood test, so I just got all my labwork done yesterday to rule out Lupus. I'll keep ya updated when those results are in. Also had an echocardiogram to make sure whatever is causing my connective tissues to be "wispy" isnt doing the same crap to my heart.

Piece of cake, right? Shit...