Experiences with anesthesia

[cpenner]

Just wondering what your experiences have been surrounding anesthesia.  Emma's been put under 3 times, once for biopsy/heel cord lengthening, once for MRI, and once for the insertion of her g-tube.  We did a bit of research and found that with some MDs there is an increased risk of complications post-surgery if the gas is used, so we've insisted on little to no gas (Emma's veins have been very hard to find) followed by iv anesthesia.  Two of our anesthesiologist were wonderful about that, but one (whom I think had problems of his own) threw a big fit and screamed at me that it's parents like me who bring up stupid things that cause more work for people like him.  We filed a complaint, and he was dealt with by the hospital.  The funny thing is, at our last orthopedic appt, we were told that they want to reconstruct Emma's feet, and the mention of anesthesia gave me a fair amount of anxiey.  It's strange how these things that happen when we're vulnerable imprint on us.  The hospital kept Emma after every surgery or procedure under observation for a few hours to make sure she was alright, and she bounced back every time really well.

[JBaker]

I have had 6 surgerys during my 21 years of life and I haven't had a lot of problems with anestesia. But the older I get, the more I have to have long talks with some doctors before I have anything done. I have to tell them that they have watch me closely and that I can't have pure oxygen, because my lungs will stop working on there own. And if for some reason I do need oxygen, they can only use it through my vent. And as soon as they take the tube out, then have to put my vent on. That's makes me respond a lot better to things.

[yorkccoh]

My daughter had a muscle biopsy this past May and her pediatrician said NOT use gas.  The doctor told us that my daughter could run a high uncontrolable fever coming out of anesthesia.   Fortunately, the staff at Cincinnati Children's Hospital were right on it.

[delaynajoy]

DJ has had 4 sedations (one to test her hearing, one for the biopsy, and 2 for MRIs) - she has had no apparent difficulties, but we didn't even know there could be additional complications!!!!!! We will know to ask more questions in the future. Thanks for your posts.
Lisa

[anne]

In medical school, it is taught that children and adults with muscular dystrophy should not receive succinylcholine. Succinylcholine is a drug that is used to paralyze a person just prior to intubation (or putting a tube down the airway). This drug is used most commonly in the emergency department along with a drug from another class to make people unconsious. The other drug is administered first to cause the person to lose consciousness and then the succinlycholine is given to relax the person and their vocal cords and make intubation (passing the tube through the vocal cords into the lungs) easier.  

Succinylcholine is CONTRAINDICATED in people with muscular dystrophy. It is not an allergy, however should not be used. Because Maia is mute and succinycholine is a word that is easily forgotten, Maia wears a medic alert bracelet that says she has muscular dystrophy and an "allergy" to succinylcholine.

When people with muscular dystrophy show up in an ER with severe breathing problems, it is important to remind the ER doctor not to use succinylcholine.

Gas or inhalational agents which are used to "knock out" the person in the operating room, can cause something called malignant hyperthermia.  Some forms of muscular dystrophy and neuromuscular disease have been shown to be associated with this reaction.  Given that the link to all forms of CMD are unknown, it is best to avoid the gas agents in the operating room. There are several other agents that can be used.

Maia has been in the operating room 5 times: muscle biopsy, two times for ear tubes, 2 times for dental work.  Twice for the dental work, the anesthesiologist used gas agents (inhalation) and Maia did not appear to have any adverse effects.

Anne

[cpenner]

Thanks for this info, Anne.  I didn't know about the succinylcholine, we did know about the gas however.  We will ask about that next year when Em has her surgery.

Carolee