I know I'm a bit overdue in writing this post. I was waiting so that I could tell you how easily Jamie came through his oral surgery on Monday...but, alas, that hasn't happened. He's had a severe sore throat and swollen glands since then, evidence that the stress of surgery caused a CFS flare-up/immune over-reaction. He is improving, though, slowly by surely. The swollen lymph nodes are almost back to normal. Of course, his jaw is sore and stiff, too, from the extraction of his wisdom teeth. Still, I think the surgical guidelines we used ARE helpful. Who knows? Maybe he'd be even worse off without the precautions we took.
We've been fortunate in our family. Since getting CFS, none of us has needed major surgery, only minor outpatient procedures. I had a laproscopic exploratory for ovarian pain (there was so much scar tissue, the doctor couldn't even see my right ovary!), Craig had his adenoids out when he was 10, and Jamie just had his four wisdom teeth extracted this week. All three of those surgeries were done out-patient but under full anesthesia. In all three cases, we used Dr. Lapp's wonderful recommendations for people with CFS or fibromyalgia who are undergoing surgery .
This is a great article and highly recommended. We print out copies to share with the surgeon and anesthesiologist. You can read through the detailed guidelines yourself, but most of it focuses on the fact that most people with CFS (studies show more than 97%) and many with fibromyalgia have some form of Orthostatic Intolerance and so need special consideration for surgery and anesthesia. For instance, IV fluids always help people with OI, and certain anesthesias, including nitrous oxide which is commonly used for oral surgeries like Jamie's, can worsen the effects of OI. The article also covers typical nutrient deficiencies and medication sensitivities for people with CFS and/or FM.
Of course, the details of your own experience with CFS/FM are critically important to share with all medical personnel involved with your surgery - what medications (and supplements) you take, your typical symptoms, etc. It took over an hour to review all of Jamie's medications and supplements over the phone with a nurse the week before his surgery! I offered to just fax her the list, but she wanted to do it the hard way... Supplements are just as important to discuss as medications, as they may have adverse effects for someone undergoing surgery, and you may have to stop taking certain ones a week before your surgery to protect your safety. Jamie had to stop his melatonin for a week (he is relieved to be back on it now!)
Besides giving copies of the article to everyone ahead of time, we also make sure to talk to the surgeon and the anesthesiologist the day of the surgery. This is easy to do because they come in to do a pre-surgery check anyway.
We were lucky. From Jamie's first visit to the oral surgeon, he understood Jamie's medical challenges. I don't know how familiar he was with CFS, but he certainly understood about POTS and NMH (i.e. OI) . when speaking to medical personnel, I always mention POTS and NMH as well as CFS because these are common conditions that occur in non-CFS patients that they are more likely to be understood by medical personnel, even if they know nothing about CFS. As soon as he saw Jamie's medical history and list of medications, he told us he would be doing Jamie's surgery in the hospital rather than in his office as he usually does.
There were two reasons for this. In the hospital, Jamie would get IV fluids which would greatly help to prevent OI symptoms, especially after fasting before surgery. Secondly, the anesthesia typically used for oral surgeries, nitrous oxide, is a vaso-dilator, as Dr. Lapp explains in his article. This means that it dilates the blood vessels, a very bad thing for someone with OI, making it even more difficult than usual for the body to properly circulate blood to the heart and brain (it's the same reason alcohol makes us feel sicker; it is also a vaso-dilator).
If you find that your surgeon or anesthesiologist is not so understanding or doesn't want to take the time to read the article (as was the case with our anesthesiologist this time), try saying something along these lines "The two most important considerations are IV fluids and avoiding vaso-dilators." (if you are unusually sensitive to medications, I would include that as a third point).
So, I thought the surgery itself went well, despite the resulting crash. Jamie hasn't had severe OI symptoms since surgery, including less than his usual aches, so I do think the IV fluids helped. I'm not sure there's anyway of preventing the immune system from over-reacting due to the stress.
Just keep your fingers crossed - tomorrow is his first day of school, and I really hope he is able to attend.
Hope you find these guidelines helpful if surgery is in your future.