Luck or Due Diligence?
We all know people with ME/CFS and/or FM who have had to have various types of surgeries and have ended up bedridden for weeks or months after surgery and sometimes suffered other horrendous events such as strokes or heart problems as a result of the surgeries themselves. Some have even ended up in nursing homes to recover.
Some people with chronic fatigue syndrome suffer severe relapses from surgery but Pat didn’t – not even after three of them in three months.
I have had three major surgeries in a little over three months and, while the healing has been slow because of low blood pressure and low blood flow to the incision area, I have not experienced any relapse inME/CFS or FM symptoms.
It may very well be that I’m just one of the lucky ones, but I have a gut feeling that it’s the result of being extremely diligent about educating the surgical team and anesthesiologists before going into any of the surgeries. I am passing this information along in the hope that it will be of use to anyone who might be facing surgery in the future.
My Personal Survive Surgery with Chronic Fatigue Syndrome (ME/CFS) Protocol
Provide a List of all Medications and Supplements (including the dosage amount) You are Currently Taking.
You may need to stop taking many of these at least ten days prior to surgery and some you won’t be able to start taking again for a certain period of time.
A pain drug and the antibiotics Pat’s surgeon was going to use were on her ‘drugs to avoid’ list.
Provide a List of any Medications That You Have Previously Taken That Have Caused Adverse Reactions.
The pain medication and antibiotic that my surgeon was originally going to prescribe for me happened to be on my list so both were switched to something I could tolerate thereby avoiding a reaction.
ME/CFS/FM Anesthesia Warning Card
Always carry the ME/CFS/FM Anesthesia Warning card with you and show it to the doctor whenever you are going to have any type of anesthesia, even local anesthesia that may be used for dental procedures. It is not only for use in emergency situations. Psychologically, there is something about having a laminated alert warning card that carries more authority than just verbally informing someone that you are sensitive to certain medications or even handing them a study you’ve printed out from the internet.
The New Jersey CFS Association offers a printable card you can carry in your wallet (at www.NJCFSA.org/wp-content/uploads/2010/09/Anesthesia-Card2.pdf) regarding precautions in case you should need anesthesia in an emergency. It is based on advice to doctors/patients who are about to be hospitalized or have surgery, developed by Dr. Charles Lapp and Dr. Paul Cheney at www.njcfsa.org/anesthesia/.
Provide a letter from the doctor who treats you for ME/CFS and/or FM explaining that he/she treats you for this condition and is communicating specific concerns to your surgical team and anesthesiologists regarding your low blood volume state and the need for saline hydration.
Saline – and lots of it – probably played a key role in Pat’s ability to tolerate her surgeries.
In my particular case, the letter included the following wording: “She has a chronic low blood volume state, the severity is well predicted by her baseline pulse. She will be more hemodynamically stable with at least one liter of normal saline on board pre-op, and the line continued for 24 hours post-op to allow additional fluids, continuing fluids at 100 to 150 cc/hour to allow an additional 2 liters post-op. She should then push po fluids with electrolytes for 3-4 days to improve her recovery rate. She has a problem with detoxification pathways, which means she may have a longer anesthesia effect, drugs detoxified by cytochrome p 450 pathways may linger.”
Provide Copies of Each of the Above Items to Your Surgeon, the Hospital During the Pre-Registration Process, Your Pre-op Nurse the Day of Surgery, and Your Anesthesiologists.
If you aren’t able to meet with your anesthesiologists before the day of surgery, make sure they read the information and ask them to sign the copies indicating that they have read it and understand the protocol. Also have your pre-op nurse read and sign it so you have ample time to receive the IV saline prior to surgery.
It is particularly important that you receive at least a liter of saline prior to surgery, perhaps more if your surgery is not scheduled until later in the afternoon, because you will be extremely dehydrated by then since you are not permitted to drink anything after midnight prior to surgery.
My first surgery was scheduled very early in the morning so I had a liter of saline pre-op and received a number of liters post-op because I spent two nights in the hospital and they kept replacing the empty bag. My second surgery got delayed until late afternoon so I received two liters pre-op and at least two more post-op because I stayed overnight in the hospital. My third surgery also got delayed a few hours so I received two liters pre-op,but only one liter after surgery because I came home the same day. I did notice the day after the third surgery that the lymph nodes in my neck were enlarged and I had some swelling in my ankle and foot. This passed after a couple of days and I’m convinced it would not have happened at all if I had received at least one additional liter before being released from the hospital.
While I’m still healing from the last surgery on Aug. 2nd, I know that I came through all three surgeries much better than many of my non-ME/CFS/FM friends have after similar surgeries and I am extremely grateful. As I said earlier, it might be that I’m just one of the lucky ones; but it could also be that due diligence in taking the extra precautions listed above made all the difference. I hope none of you ever need surgery but, if you do, I hope this information is helpful to you.
Very interesting article Cort. Thanks for sharing….I’ve posted on both of my sites…..BE
Hi,
I just want to say happy for you that you did we’ll w your surgeries. I have had a sever case of ME/CFS for 35 years and am treated by Anthony Komaroff MD but no really treatment at least for me. I’ve had a fib for about 10 years plus tachycardia and bradycardia w my heart actually stopping for 5-6 seconds at a time. Dr K denies that this is due to cfs; I’m sure it is. I had to have a pacemaker inserted almost 3 years ago requiring surgery. I had spoken to dr Charles Lapp’s office staff and they were nice enough to share info re anesthesia precautions which I printed out. I discussed all of it w my pcp, dr k, my cardiologist and asked for
It to be scanned into my medical record. The morning of surgery I informed ( very emphatically) the nurses and anesthesist. NOONE paid any attention. They gave me a normal ( for most people) dose of Fentanyl and Versed; I crashed and they had to use Narcan ( anesthesia reversing agent). Pacemaker went bad so they had to redo it the next day; this time they listened to me and gave me 1/2 the dose they had given me the day before. The surgery was at Brigham/ Women’s Hospital, Boston MA. It still took me months to recover from the surgery!!!! Thank you so much for the card to print out; I agree that it probably carries more weight. I carry several printed pages from Dr Lapp but they’re cumbersome. I could write a book about all my problems w cfs but I’m sure we all could. Thank you and thanks for listening!
I know someone else the anesthesiologist did not listen to with very negative consequences. (Now the anesthesiologist may be having some negative consequences…)
Cort thanks for the quick reply; I hope you are doing well. Do you remember me? I thought about “negative consequences” but I don’t know; I’ve never done anything like that before. I still feel my heart problems are caused by cfs no matter what anyone says! Thanks for all you do for the cfs community. I want to print out that card but I have FB on my phone and have no idea how to print it.k
I had successful surgey. No problem afterword. BUT every Dr thinks I need MORE anesthesia because I’ve taken pain pills for 20 yrs. I end up in recovery for 4 hrs. I don’t want to say go easy on anesthesia in case they go TOO easy. But also don’t want to be over sedated. I thought maybe Heavy sedation gave me restorative sleep??? Havent had luck finding Dr who gets it. I’m glad yours went well.
Cindy Kummer Interesting, Cort…I have a few problems with the amount of fluid pre and post-op. This amount of fluid would be dangerous for anyone with a cardiac condition, especially CHF and any one with some sort of kidney disease. I’m sure that would have been noted by the doctor, but it was not mentioned in this article. One other thing is that the patient states she had swelling in her lymph nodes [neck] and ankles…I am sure she meant the vessels in her neck [usually not the lymph] and her ankles…I am not really surprised with the amount of saline being infused. She feels she would not have had these symptoms if she had received ‘another’ liter of fluid…Quite the opposite, actually, the edema probably would have been worse and could have developed into a real problem. You know I really enjoy your articles, I just found some of this a bit off. But I also understand it was just one patients story of her perception of her surgical experience. I do agree that all those involved, with any patient having surgery with FMS/CFS, be alert to possible changes in the patients condition, that they may not see with a non Fibro/CFS patient, especially hemodynamic and pain threshold differences. OK, one more little thing [sorry], the problems mentioned in the second paragraph could happen to any patient post-operatively ..CFS/ME/FM or not…Surgery for anyone, can and does, have smooth recoveries and complicated ones.
Thanks for listening, Cort..You know I think you are awesome!!
Thanks Cindy, that’s a cautionary note for anyone with edema or cardiac conditions; saline does not sound like a good idea in that case,,,,
I think many people with ME/CFS use saline to recover from all sorts of stressors, I know one person who got knocked out her can by surgery and didn’t start to recover until a month or so later until she got an IV of saline.
That said, we’re a heterogenous group and that won’t work for everyone. Good point.
I think you are so interesting Cort in all that you publish: but I also know that I have had major
Problems w surgery/ anesthesia including very very long recovery times compared to this w/o ME/CFS
Cort- Great info. I am getting ready to go in for Colonoscopy and Endoscopy with Profoful Anesth. I am gong to do card and instruction sheets. I too hope they will listen.
Had problems last time they did this a year ago.
Thanks you for your positive approach to everything and the wonderful informed bloggers.
Best site on this disease anywhere.
Carole
Thanks Carole! Good luck on those surgeries. My ex with fibromyalgia got tortured by her last surgery; she’s going to follow these guidelines as well.
Thanks to Pat for posting this on Health Rising 🙂
Thank you so much for sharing. By unfortunate coincidence I too am a nearly 50 year sufferer of ME/CFS and have undergone 3 major surgeries in a 3 month period beginning in April and ending in June of this year. I have had difficulties with recovery but seem to be improving now, if slowly. My ME/CFS is severe enough that I no longer have relapses so much as much worse periods and somewhat better periods. I only discovered the true nature of my affliction about 5 years ago. I was tested over 7 years ago but not told I had the disease. My physician would never formally make a diagnosis, just palliative treatments. I actually had to discover and diagnose myself 2 years after the testing. When I triumphantly told my physician I thought I had discovered what was wrong with me might be Chronic Fatigue Syndrome she said “Well yes I have been treating you for that for the last 2 years.” Now 7 years on I struggle still for a diagnosis. When I actually said something to my doctor about the progression of the disease after a long absence out of state. She asked “Who told you have CFS?” I replied well, you tested for alternate pathologies and had been treating me palliatively for it ever since. She smiled quizzically and said nothing more. It’s obviously a taboo subject with her. Treat but never discuss an actual diagnosis that could put her reputation at risk. So happy to have found this blog and forum after all these years of self doubt and cultural defamation of my character or sanity or both.
Ouch Allen,
We have sooo far to go! Good luck!
I’ve had LOTS of surgeries and found that having IV cortisol to support my adrenals keeps me from crashing as bad. It’s one of the first things that the doctors are told to make sure to do if/when I’ve had emergency/planned surgery. Makes a huge difference in how you wake up and how you recover. I also make sure they give me IV anti-nausea meds so I don’t wake up throwing up. And I do tell them that it takes less anesthesia and that if they over medicate me —it takes forever for me to wake up and they will have a problem with my blood pressure crashing during the surgery. I give them a rundown of all the “rare category illnesses” they are dealing with. The last emergency surgery I had – they came back with papers on each illness asking questions before they took me into surgery. I did fine – thankfully.
Issie
Thanks Issie – another good suggestion for surgery. We do tend to be low on cortisol… Congratulations on educating your doctors well 🙂
HI there, I have had CFS for over a decade and live in New Zealand, they don’t seem to know much about this here…I am, at present, staying in a retreat centre for respite care as I have gone back to the level of not being able to care for myself very well.
My question, if you can help me, is about the local anaesthetics you mentioned used at dentists, I have often become very unwell after dental treatment in the past, and I am going to need all my bottom teeth removed in the near future.
I don’t have any other information to pass onto them about my health than that I have had this thing for over a decade.. they don’t do much testing or anything here once they decide you have it.
Thanks if you can help, blessings, Sharon
Ouch – the bottom teeth! Wow. I wish I could help out. I actually, believe it or not, usually feel substantially better after dental anesthesia for a couple of hours. I’m more relaxed, my energy is up, I feel clearer – it’s kind of crazy.
I hope somebody has some ideas for you. Good luck!
I used the Hokama Anesthesia protocol instead and had 2 successful operations.
http://www.ncf-net.org/patient-physician.htm
In short the protocol recommends that any anesthesia avoid using
the sodium channel. It’s a nice easy sentence to tell the anaesthatist.
I wish there was more awareness of it alongside the Cheney protocol.
Either way I am very glad your operation was successful.
Thank you for writing and bringing this up.
More Info:
http://health.groups.yahoo.com/group/electroherbalism/message/10700
Thanks for tip Rachel and congratulations on getting through those surgeries OK 🙂
Last year I had 2 cervical neurosurgeries, the first to remove severely herniated discs in January and the second required an incision down the back of my neck as they’d discovered that my the interior of my vertebrae were stenosed (calcified) and closing in on my spinal cord. I followed Dr. Lapp’s advice: I increased the amount of cortisol I was taking (without the advice of any MD as there are no MD’s in the Augusta, GA area that know anything about CFS/ME). I also made sure that my dose of armour thyroid was increased as it was too low. That resulted in such a fiasco that I received a certified letter from THE CENTER FOR PRIMARY CARE, a corporate organization that has at least 6 centers in the area stating that I could never be seen by any MD at any of their locations. Wahhhh! Which I partway mean cause I’ve discovered that no one at Medical College of Georgia has a clue either and my Endocrinologist in private practice threw in the towel and quit medicine.
What I’ve found noteworthy is how quickly my O2 saturation levels drop under ANY type of anesthesia. I’d brought my C-Pap to use post-op and the finger clippy thing that measures how much oxygen is in your blood CONTINUED to set off the alarms in spite of my C-Pap machine. What did the nurse do? Cut off the alarm. I wonder if she bothered to document or report this action. I doubt it.
Even when I had cataract surgery done and was given the pre-op “relaxation” medication, the alarms continued to go off as my 02 saturation was down to 45% since I’d stop breathing. I’m seeing the Pulmonary MD again soon to discuss this issue with her. A sleep study I’d had done more than 10 years ago indicated that I’d quit breathing (have apnea) on average every 17 minutes which meant I never got to the REM stage of sleep. 50% of the time it was due to airway obstruction though I’m not overweight nor have large tonsils, adenoids, or tongue. The other 50% of the time was that my brain wouldn’t tell my body to breathe until my O2 levels dropped precariously. Anyway, I survived it all….. kinda. Marcie
How interesting Marcie, please do report back on what your pulmonary MD finds. Does anyone have any clue why your brain is not telling your body to breathe until your O2 levels drop so far?
many cfs/me patient had many surgery.
which I think most of the surgery is unnecessary.
if you have to have surgery, you must have IVIG postop.period.(one gram once per wk for
at least 3 months)
that will save you from the so called crash.
That IVIG will restore your memory loss,save you from severe fatigue.
I requested IVIG treatment several years ago and received 3 infusions. The first caused the most severe headache of my life (a true 10 out of 10) and a rash on my shins. The second treatment was uneventful. The third treatment I didn’t finish. I experienced severe Raynaud’s (vasospasms) in all ten fingers and all ten toes, even into my palms and feet. I had never had a Raynaud’s episode like that before or since. Started having to put gloves on to get food out of the freezer and could experience a Raynaud’s episode if I caught a chill,even in a warm room. I also started sleeping 16-20 hours a day, with involuntary napping required daily for 2-4 hours at a time. Eventually got diagnosed with severe sleep apnea which was probably mild before IVIG. So, anyone interested in pursuing IVIG should weigh the potential pros and cons carefully. I cannot think of a single benefit in my case.