Let me begin by giving you a brief history of my diagnosis and how it came about. In November 1997, I gave birth to a beautiful baby girl. She being my third child, my husband and I decided to continue with our plans of a simple procedure known as a bilateral tubal ligation. In short, I was going to have my tubes tied. I was taken into the Operating Room and the next thing I know I am waking up in Recovery with the Doctor's asking me all kinds of questions about my medical history. Of course I had no idea what was going on. Apparently I had a reaction to the anesthetics during the procedure. Still very groggy, I was taken back to my room. After giving the anesthetics time to wear off, I talked to Dr. Anderson (the Anesthesiologist). He explained everything that had happened in the O.R. and referred me to Wake Forest University School of Medicine to have a biopsy taken to test for MH. I had to wait six months to schedule the biopsy because of the fact that I had a possible episode. When May 1998 came around, I was some what hesitant about having the procedure done but went ahead with yet another surgery. I received the results the same day, I was highly susceptible to Malignant Hyperthermia.
I guess the first thing you will ask is what exactly is Malignant Hyperthermia or MH. Well, that I can help with. MH is a syndrome, a distinctive set of signs and symptoms that may occur in susceptible individuals on exposure to certain drugs used to produce general anesthesia or relaxation of the muscle during anesthesia. Sounds confusing, right? Well I thought so too, at first. MH is triggered by certain drugs that are used to put a patient to sleep for surgery. The procedure could be as simple as the extraction of a wisdom tooth or as complicated as open heart surgery. It could happen during one surgery and not happen during the next. It could happen as soon as the anesthetic is administered or you could be in the Recovery room hours after the surgery is completed.
- Muscle rigidity
- Increase in body temperature
- Increase in body metabolism
- Increase in heart rate
- Increased blood content of potassium
- Increase or decrease in blood pressure
- Mottled appearance of the skin
HOW IS MH TREATED?
MH had a mortality rate of nearly 80 percent at the time it was identified in 1960. Treatment consisted only of cooling the patient and treating the specific symptoms but not the underlying cause.
Since 1979, the antidote drug dantrolene sodium (Dantrium) has been available for the treatment of MH and has contributed greatly to a dramatic decline in death and disability. The syndrome must be identified and treated early for a successful outcome. Greater awareness among anesthesiologists and other medical professionals in the past few years has resulted in earlier diagnosis and treatment. The best treatment is prevention, through detection of those at risk prior to surgery.
Testing for MH Susceptibility The most widely accepted test for determining MH susceptibility is the halothane-caffeine contracture test. This entails the removal of close to one gram of muscle, usually from the thigh (they at least give you the choice of which leg).
The muscle biopsy can only be performed at certain medical centers in North America. The testing has to be done on-site which means the biopsy can not be shipped to an off-site testing center. Thus, an MHS muscle biopsy is relatively expensive and inconvenient.
Expensive? yes, I did say expensive. Although most insurance companies will pay for this test, there are some that still give you problems about it. In a past article in The Communicator, Vol.16, #3, Ingrid Skillings, MHAUS Regional Representative, discusses compiling a letter to aid patients in their pursuit of medical coverage for procedures such as the caffeine-halothane contracuter test. "The whole idea behind the letter is to arm those seeking biopsies as they approach their insurance companies with valid reasons why this procedure is necessary", Ingrid says. This letter, which is printed on MHAUS letterhead, is available on request by calling the MHAUS office at
1-800-98-MHAUS.
Can MH Susceptible Patients Still Have Surgery? I asked the Doctor's this same question when I was planning my biopsy. I was very worried about having another episode. I was told that surgery can be safely performed in MH-susceptible patients. However, nontriggering anesthetics must be used as well as special precautions and techniques, including close monitoring of appropriate vital functions.
In surgery for a known MH-susceptible patient, the anesthesiologist should:
- avoid the use of MH-triggering anesthetics;
- be familiar with the signs and treatment of MH;
- continuously monitor the patient's carbon dioxide concentration;
- continuously monitor the patient's temperature;
- have an MH kit or cart in the operating room stocked with an
adequate supply of dantrolene.
LINKS I have found several links to be very helpful in my search for information and have included them below. I hope they will help you as well.
European Malignant Hyperthermia Group
Canadian Malignant Hyperthermia Assoc.
Information on this site was obtained from: MHAUS provides several resources to those concerned with Malignant Hyperthermia."Understanding Malignant Hyperthermia" by Henry Rosenberg, MD
in collaboration with the MHAUS PACMalignant Hyperthermia Association of the United States
P.O. Box 1069
Sherburne, NY 13460
(607) 674-7901
MH Hotline: 1-800-644-9737
1-800 (MH HYPER)
- They provide a 24/7 hotline for medical professionals dealing with MH crises. They are there to support medical professionals in successfully managing an MH crisis or to answer pre, post or intraoperative anesthesia questions.
- They work hand in hand with The North American MH Registry to provide patient-specific information for clincal care and research.
- They provide Regional Patient Conferences each year to present a medical/scientific update for MH patients.
- They provide educational materials for medical professionals and MH-susceptible individuals.
I hope my information has helped you find what you are looking for. If you have questions or concerns about the contents of this page, or if you still haven't found the answers you need, please feel free to send me an Email. I am not a medical professional, but I may be able to help you find the answers you need. I also welcome any comments or suggestions.
