I had been warned that a muscle biopsy may be needed. It may give a concrete diagnosis. I kept going back and forth on whether Polymyositis made sense for what I have been experiencing and the various test results. For the most part I still believed I have IBM but definitely didn’t want what comes with that…disability and a wheelchair.
Deep Open Muscle Biopsy – Hours before
I had a deep open muscle biopsy the day before Thanksgiving. I wasn’t nervous about the pain but I was nervous about any medicine I would be given during and/or after the surgery. So many bad experienced convinced me to speak up.
The registration forms did ask about past experiences about anesthesia. I answered them honestly and openly and hoping they would adjust whatever medicine they planned to give me.
Lucky me. I had an awesome anesthesiologist. I told her it’s hard for me to wake up after general anesthesia and it makes me nauseous. Narcotics also make me nauseous.
She said it was common and she could give me propofol and asked if I knew anything about it. I said “yeah. Michael Jackson”. She said that it’s safe but cardiologists probably don’t know how to use it.
I agreed with using propofol. The surgeon overheard and said that the biopsy causes a lot of pain. You could see he was concerned. I asked how would she know if I still feel the pain and she said she would be with the entire time and would she’d look for signs in my movements. I still felt comfortable with the deep sleep approach over general anesthesia so we went with that.
The surgeon actually removed my fistula about 20 years prior (Crohns related, large intestines and bladder) and I remembered how easy going he was. So when he came to mark my thigh, I asked if he could work with the existing 2 scars I had on the my right thigh. He said yes without hesitation.
Deep Open Muscle Biopsy – Minutes Before
When I got into the operating room, I saw a woman sitting on a stool with her armed folded upwards. I looked around. My past surgeries were in hospitals so wanted to know the difference between a surgical center and hospital. I didn’t see anything strikingly different.
Someone said they were giving me a sedative. I’ve learned to count to see how far before I’m asleep. I got to 3.
Deep Open Muscle Biopsy – Minutes and Hours After
She asked if I wanted Sprite or ginger ale. I chose ginger ale. Drank it, put on my clothes and left. They are extremely efficient and more importantly I dind’t feel nauseous. Somehow we got my prescription filled there but I don’t remember that. Tylenol + codeine. I did take 1/2 of the narcotic pain pill twice on Wednesday.
Deep Open Muscle Biopsy – Days After
On Thanksgiving I took Tylenol and then a whole narcotic pain pill before leaving for Thanksgiving dinner at my sisters. I wanted to make sure I’d be ok. Of course, it made me extremely nauseous and I regretted it but Thanksgiving turned out nice.
I took Tylenol a few more days after Thanksgiving because it was still pretty painful. I’ve had problems in the past with Tylenol so as soon as I could, I stopped all pain medicines.
Deep Open Muscle Biopsy – Weeks After and Results
It took 2 weeks for all pain to go away. And the scar is about 2 inches long and extremely thin. He actually put the scar on top of another scar. When I noticed that, it totally made me day. The little things mean so much.
Got an email from the associated hospital’s portal about 2 weeks post muscle biopsy.
- “FRAGMENTS OF SKELETAL MUSCLE WITH LYMPHOID AGGREGATES AND
FRAGMENTS OF FIBROUS
– TISSUE FROM THIS SPECIMEN HAS BEEN SUBMITTED TO UCLA’S
DEPARTMENT OF NEUROPATHOLOGY FOR PROCESSING AND ANALYSIS. THEIR
RESULTS WILL BE REPORTED IN AN
And got the final results about 3 weeks after the muscle biopsy:
“The patient’s medical history is noted. Features on this biopsy may
be multifactorial. Unequivocal perifascicular atrophy, hallmark of
dermatomyositis, is not seen in this biopsy. Sampling and/or
processing artifact is a possibility as this feature can be patchy.
Patient’s anti-inflammatory treatments may have also modified the
initial pathologic features. Constellation of medical history and
biopsy features allow for the diagnosis of autoimmune inflammatory
myopathy. Presence of COX negative fibers indicates a component of
mitochondrial abnormality. This suggests the possibility of resistant
to first line anti-inflammatory treatment of the myositis (such as
steroids). We will further study this feature by electron microscopy
and results will be reported in an addendum. In a relevant clinical
context inflammatory myopathy with COX negative fibers may suggest the
possibility of inclusion body myositis. Its association with systemic
inflammatory diseases is not known. Please correlate clinically and
see references below.
Blume et al. Brain (1997); 120:39-45.
Levine et al. Muscle Nerve (1998); 21: 1974-1728
The entire UCLA Health pathology report will be scanned into the
patient’s Epic electronic medical record. “
So the way I read it that it’s very likely IBM and not polymyositis. This post is getting a little long so I will write a post about my visit with Rheumatologist and possibly about what I had to go through because I also have Factor II Gene mutation and APS.