Tuesday, March 20, 2012

Still Waiting for Results

WARNING: If you scroll down, you'll see a photo taken today of the biopsy site.  If medical photos make you queasy, don't look!

It's been four weeks since the biopsy, and I'm getting impatient; however, Callie does not seem to be concerned. 

My biopsy site is slowly healing, but it's still very uncomfortable because clothing really irritates the area.  Since going to work naked is not an option, I finally decided to do some internet research on some possibilities for protecting the area that do not involve bandaids or any kind of medical tape/adhesive (remember, I'm allergic). 

I found a product called ScarAway that looks promising (I just bought a box at the local pharmacy this evening).  It's a silicone-based product that is supposed to reduce the appearance of scars.  My main goal was to just get some sort of protection for the area because it's so sensitive, so the scar reduction is an added bonus.  I'll post my observations on its effectiveness. 

I'm not being paid nor have I received any freebies, so you'll get real life feedback on it.  As long as I'm not allergic, I'm pretty sure I'll give decent reviews because anything that helps reduce the irritation of clothes against the incision area gets big points in my book. 

Here's what my biopsy site looks like today -- four weeks after surgery:

If you look at a blown-up version of the photo, you might be able to see that the skin below the incision is still a little raw (and peeling) from the adhesives I had to use to keep the gauze on.  My skin was so damaged from the adhesives that it's still healing two weeks later! I have no idea what the little blister above the incision is from.  It popped up more recently. 

On an interesting note, I saw a mitochondrial disease specialist a week or so ago.  It was uneventful, but potentially worth it.  He contacted my neurologist and requested my muscle biopsy sample be sent to another lab for further mitochondrial disease testing.  My muscle will be sent after the current lab is done doing their review.  Of course, that means more waiting!

I also recently had a sleep study and daytime sleepiness study done.  I will write about that experience in another post.  I won't get any results for another two weeks.  It seems that all I've been doing lately is waiting. 

Tuesday, March 13, 2012

Waiting for Biopsy Results

I hate waiting...

...and waiting...

...and waiting...

for medical test results. 

It's been three weeks since my biopsy, and I'm still waiting for results.  In once sense I feel as though time has flown by because it's already been three weeks since the surgery.  On the other hand, I feel as though it's taking forever to get back my results. 

I'm happy to report that I can use my arm 99% normally now (hooray!).  The bruising is gone, and I no longer have to keep the biopsy site covered with gauze.  I am still not sure what the surgery site really looks like because the surgical tape is still stuck to the site, but it is slowly coming off on its own.  I suspect it will come off completely in the next few days. 

This is the most invasive medical test I've had, and I feel it's one of the most important because it could give me answers.  Of course, the results may just leave me with more questions. 

I guess I'll just have to keep waiting for now. 


UPDATE 3/13/12, 10:20 PM

A recent visitor to my blog posed some good questions.  My answer started to get so long, I decided to post my answer on my blog instead of the comments box. 
Do you mind saying what symptoms you had that led to you getting these tests? I have some muscle issues and was just wondering. Also I read with the biopsy there are two ways to do it, fresh and frozen. Do you know which you had?
I'm sorry you're having muscle issues.  Unfortunately, I don't know whether my biopsy was fresh or frozen.  I suppose I can find out at some point.  I'll try to remember to ask my doctor when I get the results. 

I have a direct answer and a more roundabout answer to your question about symptoms.  The more direct answer is that I have weakness in my arms and legs that showed up in a neurological exam, and a subsequent EMG showed abnormal muscle activity that indicated some sort of myopathy.  As a result of the weakness combined with the EMG results, the doctor decided a biopsy was necessary.  I should probably mention that all my blood work for muscle disease was normal. 

I'm thinking you might want specific examples of my symptoms...  I have some trouble going up stairs.  After the first few steps, my legs start to burn from the exertion.  By the time I get to the top of the stairs, I'm out of breath and my heart is racing as if I've just run a marathon.  I can usually make it all the way up the stairs without stopping, but it takes a lot of energy. 

Things that are not heavy for most people often feel heavy to me.  Opening the outer door of an office building or pouring a drink from a gallon jug can be a challenge.  My hands don't seem to have the strength to open jars or bottles very easily (and sometimes it's impossible for me to open things).  It is too difficult for me to hold a hair dryer over my head until my hair is dry (my arms start to burn if I try), so instead I hang upside-down to dry my hair with the dryer.  Letting my arms hang with the dryer uses less strength. 

The more roundabout answer is that I always assumed my muscle weakness was from ME/CFS, so I never even considered seeing a neurologist to be screened for neuromuscular disease.  I got to my current neurologist in a roundabout way.  I started loosing my hair several months ago, so I made an appointment with a dermatologist.  The dermatologist tested me for various things including ANA.  I ended up having a positive result, which can sometimes indicate lupus. 

This result lead me to a rheumatologist for confirmation that I did not have lupus.  The rheumatologist also did a neurological exam and noticed I had unusual weakness in my legs and asked if I had ever seen a neurologist for it.  I told him I had not.  I then searched for a neurologist that specialized in neuromuscular disease, which is how I found my current doctor.  She noticed that my arms had unusual weakness during her neurological exam, so she ordered an EMG.  My EMG was abnormal, so she decided to order a biopsy. 

Please let me know if you have any additional questions.  Good luck in finding answers to your muscle issues. 

Thursday, March 1, 2012

Healing Slowly from Biopsy (with photos)

WARNING: If you scroll down, you will see an actual photo of the biopsy site.  It is stitched closed, but if medical images upset or disturb you, don't look!

The healing process has been slow, and it's frustrating not being able to use my arm normally.  A day or two after the surgery, I kept experiencing what felt like electric shocks or a tearing sensation at the biopsy site.  The doctor explained that sometimes nerve endings are cut and exposed during the procedure and can cause those sensations.  They are not pleasant!  On the upside, the zapping sensations have decreased significantly since then.

Also, right after the surgery, my hand was a bit swollen, so I couldn't wear my wedding ring for several days.  The swelling had gone down quite a bit, which is nice. 

I've been developing a slow-forming bruise a few inches away from my biopsy site.  The doctor said this can happen sometimes as fluids leak within the body from the areas of incision.  Here are photos of the bruising.

The first photo was taken a day or so after the surgery, and the second photo was taken today (about a week later).  Sorry that the lighting is so different!  I put a penny on my arm for scale.  The bandage you see at the top of the photo is the area just above my elbow and is the site of my biopsy.

Here's a photo of the biopsy area.  The doctor used internal stitches, so you can't really see them.  This technique is supposed to minimize the scarring.  The stitches are supposed to dissolve after about two weeks.  The tape is holding the sutures and skin together to help the area heal better.  I'm supposed to keep my wound covered for two weeks, changing the gauze bandage at least once a day.  I also wrap the area with an ace bandage for support and protection. 

On the downside, I'm mildly allergic to adhesives, so the medical tape I use irritates my skin and makes me itchy.  It really doesn't matter what kind of adhesives I use; I'm allergic to all of them.  I've tried regular medical tape, paper tape, waterproof tape, and various other medical tapes (including those for sensitive skin and products labeled "hypoallergenic") to no avail.  I'm even allergic to band-aids.  On an even bigger downside, I'm developing an allergy to gauze!  The entire area under the gauze is pink and itchy.  Bleh.

I can't wait until my arm is back to normal.  Please keep sending me healthy thoughts!