You have a weak spot on an artery in your brain that has ballooned out and could rupture at any time causing a massive stroke or death.
But we can fix that.
A few years ago we would have to drill a hole in your skull and you would be in the hospital for several days but now we can thread a wire from a groin vessel up there and plug it up with coiled wires.
It only takes a couple of hours and you can go home the next day.
Excellent! Let’s do it!
It doesn’t have to done under general anesthesia, you can be awake for the whole procedure. How about it?
There is something very primal about having people rooting around in your skull and leaving foreign objects in there. That is bad enough, but being awake for it? Listening, seeing everything, feeling who knows what. What if something goes wrong and you have to listen to everybody talking about how bad it is? What if you freak? On the other hand, this could be interesting. Very interesting. What to do?
Why even consider being awake for this surgery? I have had general anesthesia before without any major problems. However, there was always the grogginess upon awaking, occasionally a sore throat, the inability to tolerate only light foods for several hours, and the generalized blah feeling that could last for a few days. And there is always the possibility of serious heart, lung, allergic, and other complications.
So I searched the web for some insight to what the experience would be like. What I found was a lot of technical information via medical sites and a few before and after stories by patients, but found very little written about the actual experience of being on the table and watching things being put in your brain.
In the end, my curiosity got the better of me and I decided to go with the minimal sedation. This article is about what it was like. Hopefully it will be of use to someone who is faced with the same decision.
A BIT OF THE BASICS
For readers not familiar with these not issues, here is a short summary:
Aneurysms are an outpouching of a blood vessel wall caused by atherosclerosis, hypertension, trauma, infection, or a congenital weakness in the vessel wall. Most often they appear as a “balloon” hanging on the side of the vessel. These “‘balloons” can press on adjacent tissue and/or rupture causing sudden massive blood loss, stroke syndromes, and death. One of the treatments for this is an Endovascular Coiling procedure where small wires are threaded through a groin vessel up to the “balloon” where they link together forming a wire ball that causes the blood in the aneurysm to clot sealing off further blood flow into it.
I arrived two hours before the scheduled surgery, quickly processed through Admissions, escorted to the Pre-op area for the usual routine—change to a gown, have intravenous lines put the arm, blood drawn, vitals checked, (no bladder catheter—yeah!), and met with anesthesia and the operating support staff who did a brief physical exam. All these distractions were useful in cutting down the mild anxiety that was beginning to build.
Shortly before the surgery was to start I was given a something via the iv to relax me. Just enough to produce a bit of a loopy feeling but certainly still aware of everything going on around me and able to continue a regular conversation. Then wheeled into the operating room which looked like a gamers paradise with several large video monitors that were positioned to my left.
A strap was placed across my forehead to keep it still and it did—despite the fact that I kept trying to look at monitors which were positioned to my left. At least the ones I could see. There were several other large pieces of equipment that partially obstructed my view.
The room was quite cool and I could feel the cold solutions that were used to prep the incision site in the right groin. No pain upon insertion of the catheter but later on I was aware of some discomfort as the surgeon seemed to be palpating the area probably to make sure it was positioned right.
A few minutes later I could feel a heaviness in the right side of the neck. Likely due to the catheter moving up the vessel in my neck towards the aneurysm which was located on the artery behind my right eye. After that I didn’t feel much for awhile and occupied myself trying to sort out the screen images of the vessels and wires—a bit frustrating considering my limited view. The surgeon was absorbed with the procedure and not saying much. (I wasn’t about to distract him by asking any questions.) Apparently they were waiting for the catheter to work itself up to the exact area of the lesion. This took awhile and I drifted in and out of wakefulness.
Sometime later I awoke to the surgeon calling up to the person in the observation booth that the stent was being placed and giving the exact time. Over the next few minutes he told me to hold my breath for a few moments. This occurred three times and each time was followed by a branching pattern of lights in both eyes. The exact same pattern each time. He later said that patients often see “fireworks” when the contrast was injected. (This did not seem to me like random fireworks but more consistent with the tree branch pattern of my own retinal vessels.) Shortly after the contrast injection he counted off the coils as they were injected. Four in all. I felt none of this.
Things were quiet again and I resumed alternating between trying to make sense of what little I could see on the screen and dozing.
The last significant thing I felt was near the end of the surgery was a sudden dull pang that seemed deep in the center of the right side of my head radiating to the back. It was uncomfortable but brief. When I told the surgeon that I felt it, he asked me “where?” and seemed surprised when I told him but said he believed me.
A few minutes later he said it was all “sealed up.” Which was good because I was starting to get uncomfortable. My back muscles were beginning to cramp up and I was getting some left-sided flashing lights in both eyes consistent with an ophthalmic migraine (a benign condition which predated the surgery), and the room seemed even colder than when we started.
The surgeon leaned over, told me to close my left eye and asked if I could see him. He was clearly smiling and upbeat—which I could tell even with the mask on— and I told him I could see fine.
So, after what I think was a total of perhaps—I was dozing intermittently—one and a half to two hours the procedure was done. Over all, I would say the experience was a bit anti-climactic considering my level of anxiety going into it. None the less, I felt enormous relief that it was over and had apparently gone well.
Then I was wheeled off to the Neurology Intensive Care Unit which proved to be a completely different and some ways a tougher challenge.
Since the anticoagulants that were taken prior to and given during the surgery are still in the system and slowing down the normal coagulating process at the surgical incision site—the vessel in the groin—the patient is expected to lay flat for three hours to prevent leaking. Just laying perfectly flat, doesn’t sound so hard does it?
Wrong! This was the most difficult part of the whole experience to that point. The nurse put me on a straight incline so I could distract myself by watching tv and counting down the time via a wall clock. But it wasn’t long before my back began to hurt. The leg needed to be kept straight, no bending at knee, no rolling over. I was able to move the ankle slightly side to side which gave some relief. The surgical site in the groin was examined as well and a boundary was drawn on the bandage to mark seepage of blood. (Which was minimal.)
Of course at this point the bladder also wanted some relief and that required use of a bedpan—the world’s coldest object on earth. Or so it seemed at the time.
During all this there are monitor lines going everywhere. The heart monitor from numerous leads on your body, an automated blood pressure cuff which kicked in every hour or so, a finger clip line checking oxygenation, and the intravenous line which had not been put in the hand or forearm but in the bend in the elbow so every time I slightly bent the arm it triggered an alarm.This was all necessary of course, but not comfortable. At one point I began wondering if that mildly groggy feeling one often gets from general anesthesia might have come in handy.
Another distraction came in the form of a right-sided headache which required being moved onto a plastic transfer panel (the second coldest object on earth) and sent for a CAT scan. A routine scan had been scheduled for later in the day but was bumped up sooner to rule out any problem. Fortunately all was well and the discomfort was relieved with Tylenol. Apparently headaches are a common post-op experience and was told they might come and go over the next few days.
Back to watching the wall clock which, minute by minute, promised future freedom. And it was delicious when it came. Figuratively in being able to stretch my muscles and literally in the form of tasty salmon teriyaki for dinner. All this with a hearty appetite and no post op nausea.
Since arriving in the Neuro ICU I had been given a mini neurology exam every hour. This consisted of being questioned to time and place, squeezing each hand with the nurse’s, lifting each leg and pushing against her hands, responding to touch of face and arms, and displaying my teeth in a grin. I was told this hourly routine would continue throughout the night. This did not bode well for a good night’s sleep.
NIGHT IN NEURO ICU
I had brought an eye mask and ear plugs which helped because despite the door leading to the central nursing station one could hear conversations and light from the door window was fairly bright despite having a shade on it. The IV alarm continued to go off intermittently until finally the nurse showed me how to reset it so I didn’t have to call her each time. The line was stopped at some point but my blood pressure fell and it was restarted.
Clearly the importance of sleeping was secondary to monitoring which is understandable since if things were going to go wrong they would have gone wrong very fast. The nurses were quietly competent and empathetic. They explained why certain things needed to be done without being dictatorial and were willing to modify things somewhat to suit my comfort.
At some point I awoke with pain in my left jaw which I attributed to a flare up of old TMJ (tempomandibular joint) problem brought on most likely by the “grinning” that was part of the hourly neuro exam. Several minutes of massage took care of the problem.
Sleep continued to be intermittent and fleeting and I gave up completely on it when the Parade of Docs started at 4:30 am. The first one took off the bandage and seemed pleased with incision site. The intense right-sided headache had reappeared and he ordered a dose of steroids to relieve any swelling that might be causing it. That did ease the pain and after an additional Tylenol it went away completely.
After a little pleading, I was allowed to sit up in chair with occasional walking around the room as far as my tether lines would allow. Luckily this was newer building with floor to ceiling widows on one wall that gave me a great view and I was able to entertain myself watching the near east side of Chicago come to life in the early morning.
The Doc Parade continued with members of the anesthesia team, the surgical team, the hospital resident representing my referring internist, on and on. After a while I lost track of who was who. About 9 am my surgeon and his entourage arrived, said all had gone very well, checked the sight in the right eye (the surgery had been directly behind it), and declared me a success story.
Fortunately my wonderfully wise husband supplied me with newspapers and “medicinal” donuts for the next several hours while we waited for completion of the paperwork, post-op instructions, follow-up appointments, etc., which took until early afternoon. At that point I was able to walk out the Neuro ICU on my own and headed home to nap.
HOME SWEET HOME
But I didn’t. Nap that is. (Probably still on a sugar high from the donuts.) That night I did catch up on my sleep. There was no restriction on showering the next day though baths were not allowed for one week–nor was any repetitive bending, strenuous activity, or lifting more than 10 pounds.
I was able to do my regular activities the next day. The only problems were a sense of not being as mentally sharp as usual and a return of the intermittent jaw pain. Application of warm compresses eased that and the problem was gone by evening. Over the next few days there were late afternoon headaches which were relived with Tylenol. Their occurrence tapered off after a couple of weeks.
I was concerned about the formation of blood clots and became very careful not to sit at the computer for more than an hour at a time and developed a habit taking short walks during the day. Both of which are good habits that I continue with to this day.
Being on the anticoagulants for the following three months opened my eyes to the fact that I am a klutz. My upper arms and thighs became a canvas of scattered blue, green and purple bruises. (My husband was considering getting a T-shirt that said “I didn’t do that”.) Once the anticoagulant Pavix was discontinued and the aspirin cut from 325 to 81mg, everything cleared up. I was warned that nosebleeds could be a problem but I never had more than 3 or 4 very minor episodes.
Would I do it again?
I certainly would have the surgery considering the alternatives and yes, I would do it without the general anesthesia. Though now that I have my curiosity satisfied, I would likely ask for a bit more sedation. Two plus hours or is a long time to lay perfectly still.
Let me point out I can fully understand why someone would not want to see or hear anything about what was being done to them during a procedure where someone is putting things inside your head. Although this worked out fine for me it is definitely not for everyone. Listen to your gut and make your own choice.
One further piece of advice
When faced with decisions about a surgery you are not familiar with there is a tendency for some of us to want to research the heck out the available options. Research all you want but at some point—Stop! You will just drive yourself nuts. There is only so much you can find out. And there is only so much you can control. Put your trust in the team you have selected and put it out of your mind as best you can. (I recommend Netflix.)
Enjoy today and know that you are on the road to having many more.