There is believed to be a connection in my family. My paternal Grandmothers family to be more precise. My grandmother died in her early 40's so many of her Aunts/Uncles and the cousins were no longer contacted or only very rarely at best. My great grandmother had also died young at 36. All these mothers dying young deteriorated the familial connections that would probably be maintained in a family. This is simply some back information.
At some point my father was contacted by one of his cousins with news that his son had died during anesthesia to get a broken leg set. This was attributed to MH, something none of us had ever heard about. After this news we as a family were researched by a Dr Smith at the University of Wisconsin Madison medical school. I was in college at the time and remember going to Madison and having blood drawn and a number of questions asked but never heard of any real conclusion of this research.
We (as a family) were told to always use the MH precautions when having any surgery and to make sure all our Dr's are made aware of this family connection to the disorder. We have to my knowledge all done this. In Wisconsin there are a number of families with MH so it isn't that odd to Dr's there.
Being a military wife I do not live in Wisconsin anymore and when I needed surgery in the past few years it has become an issue.
I had surgery on my knee in December 2008 to remove a cyst. MH precautions were taken. In May of 2009 I had surgery on my shoulder and the MH precautions were also taken. I was also put in contact with the leading researchers on MH who happened to be working in Bethesda, Maryland.
The Dr's were amazing and were free with information. I emailed back and forth mainly with Dr. C asking questions and getting very thoughtful information back. This year (2011) I found out I am in need of surgery again. This time nose/sinus surgery to repair a severely deviated septum. I asked Dr. C if a MH biopsy was possibly in order to once and for all rule out or in MH. He was not sold on the biopsy. Stating that my connection was tenuous at best. I then explained I had 3 children who could not rule in or out military service because MH is a disqualifier. If I as the parent could get the biopsy prove I am negative, none of my children would need to have the biopsy done. Dr. C then with that information he agreed to do the biopsy.
The test, caffeine halothane contracture test, is only done at a few hospitals in the world. One happens to be the Naval hospital in Bethesda, Maryland. That works perfect as I am quite familiar with the hospital and it isn't too far from us. We could go in the morning and come home after. Many families have to fly in from all over to have this test done. It is also an expensive test and I am lucky that my healthcare coverage pays for it in full. Finally I would have definitive answers for me and my 3 children whether or not I in fact had Malignant Hyperthermia.
The reason the biopsy isn't done routinely is because it is invasive to say the least. It involves a long incision on the outside of your left thigh. Then a long strip of contracting muscle tissue is taken from deep in your thigh. I was told the incision would be 3 inches long.
The process started a day before the surgery was to take place. I arrived at the Naval hospital and went to the Neurosurgery dept. as I was instructed. I was given a large amount of paperwork to fill out. I went back and talked with a nurse who took notes, asked questions and sent me to the pre-surgical anesthesiology dept. There were more questions from a nurse, a blood draw, I was given the wipes to clean my skin with the night before and the morning of surgery and a urine cup to bring the morning of surgery to prove I was indeed not pregnant (lol). I was told to be at the hospital by 5:30 am with someone to take me home (my husband drove me).
Morning of the surgery we got up at 4 AM! My husband drove me to the hospital. Once there I was given a gown, booties, a hair net thing etc. to get dressed into. When they were ready they came to get me and I walked to the PACU (post anesthesia care unit) it is also where they prep you for surgery. I had an IV inserted into my hand. Missed on the left hand so then moved to the right. I have a beautifully green left hand from the missed attempt. Tons of people came to talk to me. The surgeon, the anesthesiologist, the surgical nurse in charge, on and on and because it is a teaching hospital each one of the people had one or two trainees there also. Dr. C had come over from the NIH and had with him a pile of paperwork.
The paperwork was for me to give him permission to use my tissue left over for research. If I were positive it could help the research of MH. If I was negative I would be a perfect control patient because I had been tested and know for fact I do not have MH. I signed the pile of papers, Dr C talked to me a bit and made me promise to not leave the hospital until he returned after testing my muscle tissue and finished the paperwork.
They pushed me toward the OR and around the door leaving the PACU I started joking around and they thought it was because I had been given drugs (but I hadn't) they soon fixed that problem and by the time I got into the OR I was feeling loopy. I remember seeing an entire room of people and being amazed they were all there for ME!
Woke up in the PACU. Leg was wrapped in a compression (ace) bandage. It hurt already. I was wheeled back to the place I was when I arrived and sat in the reclining chair. I had hours to wait until Dr C would return with my results. I was in pain and there was mention of pain meds but none came. At around 11:45 I was getting really uncomfortable and asked for meds. They told me if they gave it to me I would have to wait another 30 minutes. I didn't care! They did then bring me some percocet realizing that Dr C wasn't going to be there for sometime. My husband watching my face could tell when it kicked in. He said my eyebrow furrow released some. Dr C finally arrived with the good news that I indeed negative for MH! We left for home.
Day of surgery I was on 800mg of motrin and percocet. Very much needed, it hurt like heck. Walking was very painful and I also kept ice on it at all times. Slept in a recliner. I have been instructed to leave the compression bandage on for 48 hours.
Day after surgery it is slowly starting to feel a tiny bit better. I can get out of the recliner by myself. I walked around the house a bit but painfully. Still on the pain meds and ice. Slept a lot in the recliner.
Day 3, I am taking the motrin but reducing the percocet. Only taking a few doses and only half a pill at a time. Walking a bit more. Keeping on with the ice. I took the compression bandage off and looked at the incision. We measured it and it is 4 1/2 inches long. Longer than I had anticipated. Makes me a bit freaked out to see my Frankenstein leg :( There is some bruising. I noticed also that I think I may be allergic to latex as the compression bandage has left a very itchy red rash on my entire thigh. The incision is taped shut and I was going to put a piece of gauze over it all but the tape we had caused another red rash so it is now not covered except for the tape on the incision. I think I have to discuss this with my allergist before my nose/sinus surgery. My son got really upset when he saw my leg. He knows I did the biopsy for him and his siblings. My guess is he would rather he had it than me but his way of saying that is being really rude and telling me I shouldn't have had it done at all.
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