Edited for update: Got this just now from the ENT surgeon, who replied promptly to my message this a.m. So I will go with the GA and just ask for as little sedation as is safely possible: "Unfortunately the surgery would be very unsafe under local anesthesia. I need to do a wide excision to make sure there are hopefully no precancer cells left behind. We can take extra precautions during the anesthetic and surgery to not open your mouth too wide. I would only needed open about 3 cm to perform the surgery successfully. Hope that helps. Dr. F." So, because I guess I had it "under control" in terms of all my health stuff (accepting possibly needing TMJs replaced if physiotherapy doesn't get me back to a regular pain-free diet in the next few months, finally getting an ME Dx) and needed something new (ha), I was Dxed with a precancerous and possibly cancerous lesion under my tongue about a week and a half ago. The oral surgeon who did the original biopsy (easy--local anesthetic in his office) referred me to an ENT (for those in a healthcare system not totally reliant on hundreds of sub-specialties, that is an Ear-Nose-Throat specialist and not, as my husband hoped, one of JRR Tolkien's tree-stewards). That surgeon had told me that the path report recommended a larger biopsy, as the suspicious cells were mostly at the border of the sample. So I went to the ENT assuming he'd do an in-office biopsy and prepared for it by having Tylenol for after the Novocaine wore off. He told me instead that this would be done under general anesthesia in a surgery center. I thought that was crazy and asked if he couldn't please do it with a local anesthetic, and he looked at me like I'd grown a third eye and said, "Oh, no, no--this will be a much larger tissue removal, not just a biopsy." I've had plenty of surgeries, more than half with general rather than, say, an axial or spinal block. My last surgery (March 2022, reverse shoulder replacement) was under general, and I honestly believe that with each general-anesthesia surgery I have, the harder it is to recover, and I feel like I lose ground that I actually don't recover, especially cognitively. (I didn't have time to discuss any of this, including my ME Dx or my issues currently with opening my mouth, with the ENT but will mention it to his surgery scheduler whenever she gets around to calling me.) Have any of the rest of you had issues with general anesthesia, especially as regards ME symptoms? How have you handled subsequent surgeries, if so--have you pushed for non-general if possible? (I've had an old sharp plastic suture, that was cutting me like a razor, removed from deep in my abdominal fascia with local, and it was completely fine. I realize there are more nerve endings in the mouth, but I would REALLY like not to have general just to remove a tongue lesion.) Thanks and sorry this was so long.
Yikes, I am so sorry you are going through this. I understand about the general anesthesia concern and I would definitely talk to the ENT surgeon's anesthetist about the repeated general anesthesia you've had and how they have affected you (which from what an anesthesiologist told me is a real concern). Please ask to speak to the anesthetist and tell her or him about how many generals you've had and your concerns about worsening function.. Ask the scheduler to give you the anesthetist's contact details. Good luck with this. All the best!
Thanks so much--I always need prompting to be more assertive. (You'd think that, having been ill all but 8 years of my life I'd be a better self-advocate, and generally I am but not "pushy" enough.) Thanks for your good wishes, too! Take care!
Hi @SunnyK I have had several surgeries within the span of 2 years, under general anesthesia and it hasn't been a problem for me. The thing you need to consider is that many patients with ME have a problem with the local anesthesia if it contains epinephrine. The area being removed in your case is bound to be highly vascular and awkward in location. If the surgeon says "GA", I would go with GA, for your comfort and also for theirs too. You want him to do this work only once, without interruption. I agree with @shak8 and make sure the anesthetist knows about your concerns with past anesthesia and whether there could be ways to make it easier on you if at all possible. Best wishes.
It seems to me that you are being railroaded, and the operation is not being discussed properly. I realise that the quicker the treatment is done the better, but have you been told how much is being removed? What the after effects will be? Will it affect your speech? Will it affect eating and drinking? What aftercare will you need? Will there be pain relief if needed? Is there going to be any effects that will be visible to others? Are you going to drool after it? How long is the recovery time? What degree of recovery can you expect? Will you be able to open your mouth adequately for getting routine dentistry in the future? Will you need chemo? Or radiotherapy? I may be going overboard with these questions. And I know you may be limited in what choices you have. But it would surely be better to know what to expect after you wake up than to get a huge shock.
Maybe the surgeon just meant you wouldn't be awake (using a local anesthetic). Maybe they will put you "out" using Versed or another drug given IV and doesn't require a recovery room experience. Given the site of the biopsy (etc.) with general anesthesia, the anesthetist might have to intubate you via your nose, and run the tubing down your throat, which still might interfere with the site of the possible surgery. It's possible that given the oral secretions, the gag reflex, all that might require a general; I don't know. My statement about the risks of general anesthesia sequelae (outcomes) per se are in the elderly, as in perhaps over 75-80. Sometimes they leave the hospital after having had general anesthesia and it has damaged their brain function. That's one reason why surgery is avoided in the old old. But you are not there yet. This was told to me by an anesthesiologist back in 1990 when I noticed the change in a patient from before surgery to discharge. He said it was not uncommon.
Thanks, Arnie. I know the answers to most of those questions--or will, after the surgery (like, for example, whether I'll need radiation therapy or whether the lesion removal got everything.) And I think the area being removed is small (it's a small lesion), though the surgeon won't know how deep it is till he starts cutting. Thanks, Shak8. That makes sense, although I've never had a surgeon say "general anesthesia" when they meant sedation via IV in combination with some other anesthetic, such as local, axial block, etc. But that could just be my limited (~18 surgeries in my life so far) experience. You would know much better than I. One thing, a major thing, that I forgot to mention in my original post is that I have very degenerated TMJs, to the point that I have been unable to eat a normal diet since mid-Oct. My pain was severe enough initially that I went 6 weeks without being able to fit a utensil into my mouth, saw a surgeon at UCSF (highly reputable institution in San Francisco--as you know, Shak8) who said that he was pretty certain that I'd need those joints replaced but, since it was a big surgery (one I would expect GA for), it was worth trying jaw physical therapy for 4 months to see if that improved my pain enough that I could avoid the surgery for now. The physical therapy has made it such that I can get plastic (yes, I reuse them) utensils, which are smaller and flexible) into my mouth and am now on a soft foods/liquid diet. It would be a major setback if, because I was under GA, the surgical staff opened my jaw wider than I could comfortably do on my own. A month's worth of physical therapy down the drain. I realize they need access to the lesion, but I would think with a tongue that they could use tongs to pull the tongue outside the mouth as much as possible. (I will see my jaw physio tomorrow and will ask him what he thinks.) I realize this has nothing to do with ME, but I thought I'd add it, since brain fog meant I forgot to include it as a big part of my reasoning when I posted this last night.
I'm so sorry to learn of this trouble, @SunnyK. I agree with @Arnie Pye that you need a lot more information before proceeding, and her questions are good ones. Will this be a Mohs type of surgery, where smaller portions of tissue are removed until the margins are clear by microscope, or are they going purely by indications seen with the naked eye? And, if it were me, I'd want to consult the anesthesiologist in charge, not just the anesthetist, whose training is less.
I've assumed it was an all-at-once removal--the doctor didn't mention Mohs, which might have made sense with this issue. His reply to me did make me feel more confident in him, but I will ask him if I can also talk to the anesthesiologist. I try always to talk to the anesth person ahead of surgery, anyway, because I have impossible veins and get nausea from GA.
Sometimes a surgeon doesn't have the answers to some of these questions until they get in there and start the surgery. And possibly it is better that patients don't have all the details until they need them. Too much information isn't always a good thing.
Sorry to hear your news, @SunnyK. I've had to be put under three times over the past 23 years and I've never had any problems with the anesthesia with the exception of feeling nauseous afterwards. Sending healing prayers your way for a speedy recovery and good news on the biopsy report.
@SunnyK I've had 3 generals in the last 3 years and I have another op coming up in March for a hysterectomy. None of the operations affected my ME adversely. The only thing I detest with generals is the nausea and lightheadedness when I come out of the anaesthetic. I ask for a quarter dose of cyclizine which fortunately seems to fix things. Sorry your having to go through this.
Thanks so much for all of your kind and helpful messages! I'm so glad that most of you have had little problem with GA, in terms of ME. I just feel like with each consecutive surgery, although maybe it's all the surgeries and not just those with general, my memory has gotten worse. I do tell them ahead of time that I get nausea, and with my past 11 surgeries, nausea has not been an issue (though with my surgery last March, I had no appetite for a week following).
I'm so sorry you've had so many surgeries, too, Rosie, and that you have a hysterectomy coming up in March. I hope all goes very smoothly with that. Will be thinking about you.
