Expert: Ronald Levy, M.D. - 3/5/2010

Question
QUESTION: Dear Dr. Levy,

Back on 8/21/2008 I posted a question with a similar title. In my question I mentioned I suffered from PTSD related to some previous medical encounters--including when sedative and/or general anesthesia meds had previously been forced on me against my will. I also mentioned that since that time I've never had another surgery with general anesthesia and vowed I never will again. But I was also facing a serious surgical need (needing general anesthesia) and you encouraged me not to neglect that need out of fear. I hope this refreshes your memory.

If I may, I would like to give you an update. The surgery I needed then is still on hold. Thankfully, though I still need the surgery, my condition is stable. However, another problem has arisen that is actually much more serious and I'm told needs general anesthesia. But unfortunately I simply remain too terrified and now wrestle with the fact that this terror can spell the end of me.
I have an appointment this coming week for a consult with the anesthesiology dept at the hospital where I'd have the surgery if I decided to. My problem is that I'm not convinced I can be helped and even the thought of having this appointment has already sent me into a panic. The thought of having a surgery on the schedule would only bring me 24-7 panic for the entire time I wait for surgery (weeks?) Sadly, I can't have most calming meds because I'm paradoxical to them or have other adverse reactions.

I'm really at a loss. The truth is that I am incredibly  terrified. I just can't fathom doing this to myself. And in a surgical context, I don't call it sleep. I just put my dog "to sleep." Well, she's dead. "Sleep" as it relates to surgery automatically means dead to me. There's no talking me out of that connection because it's buried deep in my trauma. Once I'm triggered by the wrong word, wrong phrase said or anything else, my agitation goes out the window. How can a person not be deemed psychologically unfit for surgery? (I asked about this before).

Is there anything you wish to share? I'm so afraid of offending the anesthesiologist I will be meeting with. I'm feeling pretty hopeless. Thank you very much.

ANSWER: I do recall your case and my recommendation remains the same. You will not offend the anesthesiologist as long as you are respectful. You are not the first person to express fear about anesthesia (although you are certainly at the extreme end), in fact, probably 25% of all the questions I answer here are related to that fear. When you meet him, explain your history and your fears and give him the benefit of the doubt that he will try to do what is best for you. Listen to his recommendation and then decide if you can live with that. My feeling is that if you develop a rapport with the anesthesiologist, your fears will be less. If you like this particular anesthesiologist, see if you can arrange to have him personally perform your anesthetic (and arrange your surgery accordingly). Remember that our job is to make you as comfortable as we can within the constraints of your medical history and surgical requirements and as long as it is safe for you, we will try to accomodate you. If you just can't get past the fear, then you may have to try other behavioral modification techniques (e.g. hypnosis) to get over the fear. I would hate for you to not have necessary surgery because of this fear.

Good Luck,

Ronald Levy, MD
Professor of Anesthesiology
UTMB-Galveston

---------- FOLLOW-UP ----------

QUESTION: Dr. Levy,
Thank you so much for your prompt response. Sadly, in my case I've had to deal with other ongoing trauma related to my current surgical need. Years back I made the decision to have a procedure (using only local) that led to a complication. Since that time, I've had repeated complications. And since that time, I've never forgiven myself. Now I am facing yet another complication needing even more aggressive treatment via surgery under general anesthesia. The general anesthesia issue itself has been a terrible sore spot for over 20 years and back then I told myself never again. Now that my current medical complication (which only aggravates the PTSD) is wrapped in this, now to me if I allow myself to have the anesthesia I won't forgive myself for that either.

I'd rather be awake dealing with the noises, banging, pulling, and even what can only be considered by most as excruciating pain--because that pain is temporary. Psychological pain like mine never goes away. Oh man do I feel hopeless. Sadly, it's my feeling that most medical providers simply don't understand how bad this can get psychologically. What may seem safe to an anesthesiologist just doesn't and may never feel safe for someone like myself.

ANSWER: You really are between a rock and a hard place. You say you'd rather be awake, etc but it seems that's what started the original problem (back with the local anesthesia). Don't say that the pain, etc is only temporary because it is not. It too leaves a psychological scar (which is why anesthesia exists). Think back before anesthesia when surgery was done as a last resort and the speed of the surgeon was more important that the quality. Biting the bullet doesn't work so I don't recommend it. I really don't know how to advise you and no amount of me telling you that anesthesia is actually the safest of all the medical specialties is going to convince you. I don't know what kind of surgery you will need but is it possible to do this under a regional anesthetic? There are very few procedures that abolutely require a general anesthetic and while a regional may make the surgery more difficult, it may still be possible.


Ronald Levy, MD
Professor of Anesthesiology
UTMB-Galveston

---------- FOLLOW-UP ----------

QUESTION: Dr. Levy, first and foremost I want to apologize for the last post as it was quite loaded and unclear. The issue with the surgery regarding the local had nothing to do with the local. The local was not the problem. In fact local and regional are very much preferred. Also, with all due respect, the physical pain does not scar me as you would think. In fact, during a previous surgery electrocautery was used on my muscles where I had no anesthesia at all. Yes, it was uncomfortable, but I did absolutely fine, I recovered fast, and ironically I was without post op pain (no meds). Unlike most patients I have a very high pain tolerance, and with this pain tolerance I put up with many things that most people wouldn't put up with.  In effect, my threshold has been reset. It takes something to get really bad before I get care for it. At the same time, when I do get care for something, I manage it so well that I don't "look" like I'm in distress--so many times I'm not taken seriously my medical providers because of this.

Not being taken seriously is a very big problem for me. I've found myself in dire medical straights many times because good-intended medical staff continue to underestimate what my body will do. In other words, I don't know how to say this, but it's not the surgery that bothers me--it's the people involved with it. I often catch them making potentially serious mistakes with me even when I'm awake. This is due to many serious comorbidities I have (I didn't mention this earlier because I didn't want to overwhelm you).
My overall medical history is very extensive and complicated. Earlier in life it is believed I was the child recipient of Munchausen by Proxy from my mother. I was put through ordeals I wouldn't wish on anyone. That included being fed by mouth, gassed and injected with drugs that altered my consciousness. This was forcefully done many times. Each time I thought I would die. I didn't, but I also had another problem--an undiagnosed heart condition. Because of what I went through by the time was about 10 or 11 years old I stopped telling my parents everything regarding my health. I suffered terribly in silence for many years as a child from very real medical problems that never got addressed. Now I'm paying for it as an adult both physically and psychologically. I've been in therapy for this for many years with little progress. I still go to my doctors for everday care (such as vaccines, etc), but when it comes to serious issues where the medical providers will have to get much more involved, I back away. I can't tell you the number of times my docs have told me I needed to go to the ER for something-- but don't go.

Moving on,numerous times I've been denied surgery completely because it was deemed that I was much too high of a risk. When it comes to my current medical complication I reference, I was told previously by a doctor that a surgery would be too risky, dangerous and life-threatenting (in those exact words). That terrified me to no end for any surgery.

As for the surgery itself (thank you so much for your patience here) it involves a pacemaker complication. Years back treatment was attempted with ablation for abnormal heart rhythms (SVTs) but my perfectly functioning AV node was destroyed instead (leaving me in CHB and with a permanent pacer that I'm fully dependent on). Months after the surgery, other medical providers discovered that the wrong pacemaker was implanted. (My heart had to literally stop beating to prove this because the doctors didn't believe me when I complained about it). I had many other complications with that pacer as well so it was eventually replaced by a new one. Since that time, that new pacemaker pre-eroded (no infection was ever found). A new one implanted after that new one pre-eroded again (no infection found for the second time). Within less than a year (another new one to replace the second new one and this time implanted into my muscle) migrated. However, this time it took two more years before the migration was diagnosed (I suspected this again and complained about it, but the doc dismissed my concern two years ago). Now I'm in a really big bind. I have a pacemaker that's sitting low in my chest (under my breast) possibly ready to pre-erode again. Now the doc wants to move the pacemaker back into position again (under general anesthesia which already terrifies me in light of my other history) for a procedure I'm not convinced will work after having 3 failures already. With all this going on, it's become my opinion that initially allowing myself that first ablation attempt was the worst mistake of my life and I haven't stopped paying for it. This has been very traumatic with no sign of letting up. Now I have to pile on my terror with general anesthesia?

Doctor, please understand that I'm not trying to bash my doctors. What I'm trying to say is that I know my body VERY VERY well, I've had instincts prove me right many times over (I don't know how I do this, but I am very good at it) and those instincts generally fly in the face of all the medial education folks like you have.

With all that said (sorry about the length), I feel it's very possible that something terrible will go wrong under general anesthesia. My history also includes a lengthy history of serious drug reactions (ever heard of someone anaphylactic to Robitussin? Well, I am and found out the hard way). Getting medications at a pharmacy is a nightmare, because my body simply won't tolerate most of them. I have to exist on medication dosages that so low they can hardly be therapeutic. Finally, things are so bad in this area that I'm even terrified to touch alcholic beverages. For example, without any meds on board, two wine coolers previously rendered me deeply unconscious for 16 hours. And after another previous anaphylactic drug reaction to vancomycin I was given only 25mg Bendryl IV instead of the standard 50mg. It took care of my allergy, but also knocked me into a deep unconsciousness immediately that lasted for 8 hours. God forbid that I have another reaction while under anesthesia and someone decides to give me 50mg. To me, waking from anestheia is an incredible concern.

In a nutshell, where there's a rare complication, I find it.
WHEWWW, so sorry again about the length of this post. Thank you so much for hearing me out. As for my surgery, because it involves the chest, I expect that regional is not an option. I have heard of paravertebral blocks though. Is this possible? You are right, I'm in between a rock and a hard place. I am facing a surgery I don't believe will work while having already been told by other docs that I'm too high of a risk.

Your input is certainly welcome and appreciated. Thank again!

Answer
Don't blame yourself for the ablation because if you decided not to get it, the liklihood is you wouldn't be writing me this email (you'd be gone). That you had a complication from it is unfortunate but the possiblity of complication should never prevent you from surrgery you might need. Paravertebral blocks should work (as could well administered local anesthesia) but there are also potential complications from those blocks as well (e.g. pneumothorax, etc).  With regard to potential anaphylaxis, the best place to have an anaphylactic reaction (if there's ever a good place) is in the operating room where we are already prepared to manage it. If you tell your anesthesiologist that less Benadryl is enough, he will treat you appropriately. Whether your surgery will finally fix the problem or not is really a moot point because without the surgery, it's only going to get worse and may make a future surgery even more involved. I think the prospect of that should concern you enough that you will agree to have it done now while it is still a relatively "minor" procedure. As for being a high risk, I might agree but I don't believe you are too high a risk to have surgery. I can tell you that I have done anesthesia on people that are far more at risk than you and they have done very well. There are VERY few patients these days that are TOO sick for surgery and based on the information you gave me, you are definitely not one of them.

So explain all this to your anesthesiologist, let him give you his expert opinion, and then do what you think is best for you. Because in the end, you have to be happy and to live with that decision.

Ronald Levy, MD
Professor of Anesthesiology
UTMB-Galveston