Concerns with General Anesthesia as a 22+ year type 1 Diabetic EXTREMELY LONG STORY

Type 1 and LADA
1

Hey Guys,

I hate to be one of those people freaking out on the forums but I have a legitimatize concern with a surgery that I need to have and as you are probably aware much to my dismay I find out I often know more about diabetes than the Doctors who I am placing my life in the hands of. This is going to be a very long story so I apologize for that.

I have been Diabetic since I was 7 I am now about to turn 30 in the next month. I have struggled with dawn Phenomenon as an adult diabetic and have had very little success controlling my diabetes over the last few years. In spite of this I have never been DIAGNOSED with any complications. I am very physical fit and even took up distance running as a hobby. Things finally started to snowball in the beginning of this year. I was showing symptoms of gastroparesis. I then found out that I had celiacs disease. I changed my diet and felt much better and unwisely dismissed the possibility of gastroparesis. I still struggled with my blood sugar in spite of testing 25 times a day and taking insulin over 6 times a day. ( and still not having lows still running high usually).

Finally in May I decided to try a CGM. With in one week of using a CGM I saw dramatic improvements in my blood sugars and now I am rarely ever over 200 even after eating when in the past I would wake up 300+ most days. To be blunt my blood sugars have been excellent and I was very excited and happy about this. Now as you may or may not already know what can happen when you dramatically improve your blood sugar levels? Diabetic Retinopathy.

Like many Diabetics who dramatically tighten their BS control I suddenly started to show symptoms of retinopathy. I developed a hemorrhage in my vitreous. I went to the eye doctor and he confirmed I have advanced retinopathy. He scheduled me for in office laser surgery. I was upset but glad when the doctor told me my retina still looks good and I wasnt "too late" catching it.

I went to the office for the first laser surgery. I admit I was tense but I was fully ready to do what had to be done. It turns out after struggling for quite a while trying to get the lense in my eye and hold my eye still the Doctor was ultimately uncomfortable doing the surgery this way because of my rapid eye movement and said the best way to do it would be in the hospital with IV sedation but breathing on my own. Now I was really starting to worry. I didnt want sedation for a simple surgery but I was left without a choice.

Surgery was scheduled for the next week and .... I got into a car accident the night before and had to reschedule for the following week. The day before surgery comes and I am trying to mentally prepare for the surgery when the doctors office calls and asks to reschedule because they had an emergency. Which I understand it happens. At this point the surgery was scheduled for 3 different dates and has still not happened.

Finally they scheduled my surgery for yesterday. I was told Diabetics are scheduled for early AM surgeries. I find out the day before I am scheduled for 11:30. I had already made plans to take my lantus late in the morning so that I was not taking it before I went into surgery as I was expecting an early morning surgery. I show up to the hospital at 11:15 or so already late in taking my lantus and not having of eaten since before midnight the night before. They put me on an IV and then let me know theres been an emergency and the Doctor wont be until 12:15 and 2 people are ahead of me and not to take insulin without talking to an anesthesiologist. Hours go by without food insulin or fluid. Finally maybe around 3 or so an anesthesiologist comes into the room and tells me that he doesn't believe IV sedation is the right choice and that hes the anesthesiologist and the surgeon isnt. Then he wanted me to sign consent to be sedated and put all the way under general anesthesia. I told him that was not what I was told and that I wanted to talk to the surgeon. Another 2 hours go by without food insulin or fluid when my eye doctor the surgeon shows up and I am very releaved to see him. He is the only one I feel like I can trust through this whole process. I told him I am uncomfortable not only with what the anesthesiologist said but that he was very rood and he sort of made a rude comment and stormed out of the room when I expressed that I wanted to wait to sign the consent. At this point he was understanding and went and got the anesthesiology chief who allowed me to ask questions and was more professional than the previous person I met with. I expressed to him that I believe its possible that I have gastroparesis as its been 17 hours since I have eaten and I am still belching and I dont feel my stomach is completely empty. At this point he said that in that situation then would put me all the way under general anesthesia or try a lighter sedation then if that doesnt work put me all the way under. Because of the constant delays,high blood sugar all day from lack of insulin and new uncertainty and risks about how the procedure would be done the surgery was "rescheduled"

Now I am at the point where I am meeting with my eye doctor again to discuss how to proceed with the surgery going forward but I have an extreme concern with being put under general anesthesia ( pretty much an enduced coma) especially for a fairly low risk surgery. I feel at this point the sedation is more risky than the surgery. I am very concerned because I have had poorly controlled diabetes for a long time and there are many unknowns on my medical chart regarding the status of my kidneys and heart etc which all can pose complications with general anesthesia. I know that I have had scares with my kidneys in the past. I see a lot of bubbles when I am done urinating and the frequency that I go is concerning I feel even for a diabetic. My blood labs show ok createnine levels but I feel something isnt quite "right" I also had a stress test 2 years ago that came back negative but again this was 2 years ago and I have been told I both do and dont have a hear murmur.

Now I have to make a decision it sounds like to go under fairly risky sedation for a fairly low risk surgery. My vitreus hemorrhage has cleared mostly only after about a month or so and my doctor did tell me that the dmg in my eyes is stable now.

I dont believe the anesthesiologist did or will do the proper research on my medical condition before putting me under and the fact that if I didnt ask about my stomach yesterday they would of possibly risked me suffocating myself. As soon as I said something they took the IV sedation I been intended to get off the table. The concern is what if I didnt ask that question? My point being is I dont feel like they do their diligence.

Again sorry for this really long story but I didnt want to just post a one sentence question without it being in context.

Any input someone could give regarding risks,concerns steps to take before going under general anesthesia would be appreciated.

2

If you're worried about all the possible complications that could occur with general anesthesia, especially with the current "unknown" status of your other medical issues (heart, kidneys, gastroparesis) I would talk to your eye doc about postponing it until you can get information about the actual status of those other possible conditions. See a cardiologist, a GI specialist, a nephrologist and get your heart, possible-gastroparesis, and kidneys checked out. It sounds like your hemorrhage has cleared and is stable, so I'd check with your doctor again to see if you have time to wait before you need this surgery. I had a couple of bleeds in my eyes when I got my blood sugars under better control, and they cleared up on their own after several months. I'm not saying that will happen with yours, but if your doctor says they're currently stable, it might be worth your peace of mind to try to wait to have the surgery done until you can get the other worries sorted out. Good luck! I don't think you're being too over cautious or anything, so don't worry. As diabetics, we often have to be our own advocates with medical proffesionals, and I think you are doing a great job at that!

3

Thank you for taking the time to respond. I am going to talk to him on the 22nd.

4

I went under general anesthesia when I got my wisdom teeth out. It was done as day surgery and there were no real issues. I have never met anyone else who has been knocked completely out for that surgery, but at the time I was only 20 so I didn't really question the doctor.

Is there any way to get a second opinion? I'm not sure about laser for diabetic retinopathy, but I have has a few bouts of laser to stabilize my retinopathy of prematurity (which I've had since birth). I have nystagmus as well, which is an involuntary, constant, rapid "wiggling" of my eyes back and forth. It's virtually impossible for me to hold my eyes still. I was concerned my doctor would have problems "aiming" with my eyes moving like this, but he seemed to be okay with it. Really, my only real issue was that for some reason even with anesthetic eye drops I can still feel the laser and end up flinching uncontrollably, so the four times I had it done we had to keep stopping to let me rest and put more drops in.

5

Hi Jen. Thank you for taking the time to reply.

Are you sure it was GENERAL anesthecia for dental surgery? With general anesthesia I believe you are in an enduced coma and unable to breathe on your own. I believe Dental work is largely done with a form of IV Sedation that allows you to maintain your own breathing.

What you said about moving the eyes back and forth is valuable information to me. That is pretty much the situation that I am in.

6

Qualified anesthesiologists will be knowing about how to manage anesthesia along with diabetic status.Your fears are but normal. To be doubly sure and confident of the procedure, check out the qualifications and experience of your anesthetist.Consult an endocrinologist / gastroenterologist / cardiologist, and get clearance from them regarding your current surgery. Finally don't panic, the risk in anesthesia is much lower than dying in a motor accident.
Also consult another ophthalmologist , your vitreous hemorrhage may not require surgery but maybe just intravitreal injections or PRP/ focal laser.

7

Yes, it was definitely general - done in the hospital and they put in a breathing tube (I, of course, don't remember any of that). The surgery was scheduled for 11:30, I think, and I arrived at the hospital around 10:00 and was home by 3:00 that afternoon. As I said, I've never heard of anyone else who has been completely knocked out like this for wisdom teeth. I had all four done at once, so perhaps that (and maybe it was too involved to do in the dentist office, as they weren't yet coming through my gums) in combination with the diabetes is why it was done that way.

8

Thank you for sharing. I had not heard of that previously. I am glad all went well for you.

9

I just had surgery on my knee six weeks ago and I was put under general anesthesia. I have also had a number of procedures done on both of my eyes. Like you, I have been worried about being put out, not feeling a hypo, loss of control, etc. I would like to put your mind at ease, if I may.

First, make sure you are having all of your procedures done at a major hospital and not a community hospital. Despite how they may act, the folks at the major hospitals are on top of things, such as taking care of your diabetes when you are unconscious.

For my knee surgery in June, I was so nervous before the surgery. I was checking my blood sugar every ten minutes while waiting to go into the OR. I went over it with the anesthesiologist before the procedure. I knew I was going to be out one hour. He assured me that he would personally check my blood sugar after 30 minutes and give me some glucose if I went under 85 or give me one unit of insulin if I went near 200. When I came to an hour later, he was right there next to me and told me he checked my blood sugar and the mid point and it was 93, perfect! I went it to the OR at 120. I took a half dose of Lantus that morning and one unit of Humalog to fight DP. This was a 7 a.m. procedure.

For my eye procedure, I had a hemorrhage just like you, I had the vitrectomy done in the retina specialists OR at his facility. It was much like siting in a dentist's chair. I had what they call conscious sedation. I was wide awake but I was not tense or nervous feeling. I was very relaxed. There again, it was an early procedure, 7:30 a.m. I took half my morning dose of Lantus and a unit or two of Humalog just to fight a little stress-related climb. The procedure took 45 minutes. I forget what number I went in at, but my blood sugar didn't move much during the procedure. Everything came out fine. I have also had a bunch of lasering sessions that didn't require any medication at all.

It's always going to be a worry no matter what, but fear of being put under shouldn't deter you from getting the treatment that you need in order to be and stay well and functioning. I figure it this way, these people are treating you for a diabetes related complication. They know you have diabetes so they are going to be ready to treat you accordingly. Again, I stress to make sure you have your procedures done at a major hospital and not a smaller hospital.

Also, when I have had these procedures done, I was required to have my general practitioner sign off on a form that says my heart can tolerate it. I had to have EKGs and some blood work done, etc. If you are worried about delayed gastric emptying from the night before, then plan to have a smaller dinner or eat really light for that day.

I hope this helps.

10

Thank you for responding. Unfortunately the anesthesiologists would of put me under without breathing assistance and risked suffocating me had I not specifically asked him about my stomach contents. Mind you this was as they were about to wheel me into the operating room. I do not have faith in the anesthesiologists to understand not only diabetes but MY diabetes with so many question marks on my medical chart. If its not on your chart it appears to be assumed in perfect order. My stomach issues are a perfect example. One sentence from me is the only thing that prevented them from doing an extremely risky procedure that they took away as an option just form me telling him about my stomach.

The surgery I am getting I believe is only PRP. That is a large part of my concern. The sedation seems more risky than the actual surgery plus I havent had a second bleed after the first one over a month ago which is clearing up.

11

Thank you for responding as well. I do not have so much a fear of my blood sugar having issues as I anticipate going in slightly high as my surgery would be less than an hour. FYI though they told me they wouldnt check my sugar because of the length of my surgery.

This IS a major hospital and no work up was done on me beforehand. My primary just signed off on IV Sedation ( not general) and did no tests on me.

As you are aware General Anesthesia is a much more serious sedation and the fact that the procedure is a fairly low risk one is making me concerned.

12

We have to be our own advocates in situations like these. I would say, DEMAND that they check your blood sugar half way through the procedure. There are going to be several people in the OR. Surely there will be a nurse who can take 60 seconds to check your sugar if it will make you feel better.

I'm getting from your story that there were a lot of 11th hour decisions being made about how to do your procedure. Now that you know how they want to carry it out, a little advanced planning should go a long way. Since you know they want to put you under general, make sure your primary care orders the full run of pre-op testing and clears you for general anesthesia.

Since you are worried about gastric contents, again, plan to eat light the day before, say only broth, jello or other clear liquids. You know your stomach better than anyone. Eat only what you know will pass though you quickly for that day. \

Now that you know what to expect, you can orchestrate it all much more to your liking and comfort level.

If you still don't like the way things are going, you can always find another doctor who can, hopefully, do it a different way.

Again, best of luck with it.

13

Thank you. You and everyone else in this post have really given me some valuable insight.

I just made a an appointment with another Retina specialist out of a very well known eye hospital for the same week I am meeting my current retina specialist.

14

i had major inpatient surgery last year - general anesthesia for 4 hours. I was put on a glucose/insulin drip (I believe) and they used regular insulin because it's the only one they can drip, and they checked my blood sugars, literally, every 30 minutes for 2 days straight. I didn't have any problems. the anesthesiologist met me before my procedure. I was high too when surgery started from a reduction in basal night before. You have to do what you need to do, yeah..it's scary but anesthesiologists work with diabetes probably daily..maybe not type 1's but it's part of their training, i believe.

15

If its just PRP than you do not require sedation/anesthesia. It can be done under topical anesthesia and is tolerated very well by patients. Even intravitreal injections do not require sedation/ anesthesia. Probably your anxious behavior may be the reason for the ophthalmologist to ask for anesthesiologist. Just relax and discuss options without sedation with your eye specialist.

16

Sounds like why it was done in the hospital. A lot of times when it is multiple extractions like that, especially when they need to be cut out, they will do it under anesthesia.

17

I understand your concerns, but even with conscious sedation your respirations are VERY carefully monitored and the very first incident of any breathing difficulties they are assisting your respirations. Anesthesiologists are highly trained in intubations and can do them EXTREMELY fast. I have had multiple surgeries in the nearly 30 years I've been diabetic, both with conscious sedation, and general anesthesia. Under both types your vitals are monitored very, very closely. Do you have an endocrinologist who manages your diabetes? I always consult with my endo before any surgical procedure for the best way to take my insulin, prior to going under.

18

After all the wisdom teeth horror stories I have heard, I'm actually really glad I was completely out for it! The worst part for me was the first evening/night following surgery - I was maxed out on Tylenol 3 and it still hurt so much I couldn't sleep (and also bled all night, nasty!). But at least I didn't have to be awake and hear all the sounds while they were doing it, and/or get two done and then have to go back later for two more.

19

I would try to talk to the anesthesiologist in advance if you can. I once had surgery and told several people in interviews that I had asthma and had trouble being sedated on a previous procedure. I told him this right before the surgery and he said he was glad I told him because he was unaware of it! and he was going change the meds due to the asthma. I'm sorry this happened with your eyes.. I didn't know that tight control can cause retinopathy and such. I hope everything goes really well. I have had problems with blurry vision since dka but there is no retinopathy. I don't have much specific advice because I was not D at the time of my surgeries and I don't even know what they gave me that last time. I usually wake up in the middle of it all, but that time I was out until the recovery. I do feel after each sedation my memory gets worse so I try to avoid it if I can.

20

I don't blame you, it really is the best way, esp when they have to be cut out to get them all done at once, and put out for it. LOL of course like you said, it hurts like heck afterwards. Afterwards was worse for me, my cheeks were swollen for MONTHS, looked like a chipmunk, and I also had gotten dry sockets too. Was NOT fun.