Anesthesia

[k'smom]

A couple weeks ago we noticed Kay had a knot just below her knee. We asked her ortho about it this past week and after being xrayed, found it she has some bone tumors. The ortho believes them to be osteochondromas. She also has something showing up that is called fibrocortical defects or nonossifying fibromas. In May, they are going to take the tumor off of her knee that we found, because it is the largest and the others are just forming. I don't know why they don't want to take all of them at the same time, but we are supposed to discuss that further at her next appt.

She was supposed to see a cardio that specializes in POTS and the genetisist, but the night before her appt, my best friend passed away and we had to reschedule. So my questions are this. Do you have to take specific precautions with POTS patients and anesthesia? Is anyone familiar with these types of tumors? I'm told they are considered benign.

[Stace915]

Hi there,

I am so sorry to hear about your friend. That is terrible.

I don't know anything regarding the tumor but I do know a bit about POTS and anesthesia. I had surgery about a year and 1/2 ago, it was elective cosmetic surgery but due to anesthesia and my health it almost did not happen and needed a lot of special sign-offs etc.

What my electrophysiologist and later Dr. Grubb told me is that there is no reason that a POTS patient cannot have anesthesia however you need to take special precautions. In my case, the doctors some how contact the anesthesiologist way before my surgery and let them know my situation, they said generally you do not find out who your anesthesiologist will be until the day of surgery but they were able to schedule someone specifically for my procedure and they made sure that he was fully prepped on my case way before hand. I was told that the main concern was just watching my vitals, making sure that my BP did not drop too low and that my heart was not racing too much. They said that the actual anesthesia drug should not effect either my HR or BP but since my body always does its own thing, they needed make sure that it didn't react in a strange way.

I was beyond nervous, in fact I almost canceled the procedure just because I was so nervous about the anesthesia. We met the anesthesiologist that morning before surgery, and we even called my cardiologist and he went over my case with him again and everyone assured me that there was no reason to worry, that it was more of them needing a heads up that, hey this patient has a condition and her BP drops dangerously low and she gets tachycardia so that in case either of those things happened they would be prepared with the proper anesthesia cocktail to control it.

Surgery went perfectly, they said that both my HR and BP stayed pretty normal through out! I did have a complication a day later but that was completely unrelated. Since then we thought I was going to need surgery on my wrist (luckily some intensive occupational therapy and a brace saved me from that) and I discussed everything with a different surgeon and he said the same thing, that he would just work with my cardiologist and basically treat it the same way that my other surgeon did.

Hope that helps!

[Guest letitbe]

(((((kay & mom))))

[jbenz1772]

So sorry to hear all that you are going through. I don't have any information reguarding the anesthesia, but I might have a suggestion for you to look into reguarding the osteochondromas. I work in Interventional Radiology at a Children's hospital and we are doing something called Radiofrequency Ablation. It shortens the recovery time significantly and reduced pain post procedure. One of our top ortho-onc surgeons is now recommending this for many of the cases. Just something to look into.

Best of luck,

Jennifer

[Christy_D]

When my son had his endoscopy in Cleveland, the anesthesioligst knew all about POTS, so he increased the IV to make sure my son was very hydrated. He also explained that his bp/hr could drop really low during the procedure, which it did. The doctors waited until he stabilized before continuing. All in all, everything went well. Just make sure she is very hydrated.

Christy

[Guest letitbe]

pardon my 'now deleted' novel size post.

I thought maybe knowing long term effects are imp as well.

good luck and strength.

[MamaTrain]

So sorry to hear surgery will be in Kay's future! I just asked my cardio about surgery/anesthesia and she said well hopefully it's planned ahead of time and we can prep the anesthesiologist that you will need much more hydration and very close supervision on HR & BP. Didnt sound too bad so I was more at ease about it. She did say if it was an emergency type of thing that hopefully someone could let them know about my dysauto before it got too far into treatment. I will now drill my husband on what to say in case of an emergency! LOL!

Best of luck and stay positive!

KC

[heathmcev]

I'm sorry about your friend as well as Kay's new dx. All I have to add about experience with anesthesia is that when I came out of it I was absolutely freezing!! I know this is common, but my reaction was extreme. My teeth were chattering & my body shivering violently for almost 2 hours - it was crazy. Must be related to our body temps being wacky & overly reactive. If Kay tends to get cold, I recommend taking warm layers and a blanket for her to cuddle up in post-recovery. Otherwise my BP & HR were fine. Best of luck!!

[k'smom]

Thanks ya'll and thanks for the hugs too. I'm still trying to get her worked in to an appt with the cardio. I don't think I'm going to let anybody do anything until I talk to him, just to be on the safe side.

@letitbe: I'm sorry, I didn't see the post you deleted. Why did you decide to delete? Did you have long term effects?

I believe in "knowledge is power". If it had not been for the people here, we would not know what we know now, lol!

[MamaTrain]

K'sMom,

I was just thinking on the way to work that back when I had my hysterectomy (before my dysauto) I had asked them if I could have a spinal instead of being put out as I had done horrible after surgery before and they agreed that it would be ok. It was very different but I must say I felt better than I ever had after any of my other surgeries. Perhaps Kay could have that so she doesnt have to be completely put out. Ask about it if you think it might be a good idea!

Hoping your having a good day,

KC

[k'smom]

Well the tumor that Kay found has become very painful and is causing fluid around her kneecap and swelling in her entire leg. We need to get the surgery scheduled, but we have to get clearance from the cardiologist first. Apparently her holter monitor and 30 day event monitor results weren't too good. The 24 hr holter showed bradycardia 57 times and tachycardia 48 times. She also had several episodes of her rate heart suddenly decreasing at 36%, increasing at 54%.

I got a copy of the xray reports and I didn't like them. Too many "might", "may", and "possibly" benigns for me. I'll be glad when the tumors can be safely removed. The thought of, "if there are three in one knee, how many more could there be in her body?", is driving me insane.

Kay is just not a complainer so when she tells me somethings hurting, she's really hurting. I would greatly appreciate prayers for her and maybe some for my sanity too.

In the meantime, all of you are in my prayers.

[dianne.fraser]

K'smom - I'm so sorry to hear of what you're going through right now.

I had a general anaesthetic a few years ago, and had a lot of trouble waking up afterwards. Last week I had a twilight sedation to have a tooth removed. My heart rate and blood pressure stayed stable, but my body temperature dropped and stayed low, even though the anaesthetist took precautions - I was covered with a plastic sheet during surgery, with warm air being pumped in to keep me warm, and the IV solution had been warmed.

You and your daughter are both in my prayers.

Dianne

[Sallysblooms]

I have had general aneth. twice since I had POTS. I will be having it again in a month. I do fine, hard to wake up, but many people have that, pretty common. I just make sure they leave me alone and my hubby is always with me. I don't let them bother me with ice etc.. Just let me SLEEP and come "to" peacefully. I wear my eye mask and do fine. I take deep breaths to get lots of oxygen. Then I take is easy for a day or so, easy to do when you have POTS!

I hope everything goes very smoothly for the surgery.

[k'smom]

Ok so I will discuss hydration, temp, ect. with the new cardiologist. Of course hr and bp are always of concern, but I didn't even consider the others. Thanks ya'll!! It is greatly reassuring to know that some of ya'll had no issues, and the for the others, the issues were pretty easily dealt with.

[k'smom]

Well I took Kay to see her internal med dr. When I told him she needed surgery, he nearly went off the deep end. His vote is no. He says there is too much risk involved with anesthia for her. He said no one can know how her autonomic system will react and he's afraid they would have trouble waking her up after. She will see the cardiologist on Thursday. I really don't know what we're gonna do about these tumors. I think for now, our best bet is to say a lot of prayers and try to take our time making a decision.

[comfortzone]

Would it be possible to have a regional block - like a femoral or popliteal block or both rather than a general? The only reason I ask is that if there is a chance the patient has any hypermobility of the neck - when they crank the head back to intubate etc.... some cord compression could occur and set you up for some unexpected issues post op perhaps. I have 3 different joint replacements with a spinal......only one with a general.... before I ever knew I was hypermobile in most all my joints..... I do know that with hypermobility often local anesthetics just don't work all that well - they are absorbed much too rapidly - leaving you in pain - and the medicine absorbed so fast your heart can react to that medication...such as lidocaine. If hypermobility is not an issue at all - I would follow probably the most conservative doctors recommendations - as safety first is always recommended. I know that with a full on general AND the femoral block - my heart rate sky-rocketed when the doctor made his incision - and so did my b/p - something both the surgeon and anesthesiologist felt compelled to tell me about once I was in recovery...they mused, "wow your body must use that stuff up so super fast!" I mention it as sometimes bone issues can be a sign of a connective tissue disorder or a problem with collagen types 1, 3 or 5 - others too - so your cell matrix is different that the average joe.

[k'smom]

She definitely has hypermobility, but we haven't verified the cause of that. We are waiting to see the geneticist on May 2. I didn't realize that the bone issues could be related to a connective tissue disorder or something else. So thanks for bringing that up. I know she will be checked for EDS and probably everything else under the sun. I really have no idea what all the geneticist will want to do.

I will have to find out about that block. I'm sorry, I'm not familiar with it at all. Thanks for your ideas and info!

[jbenz1772]

Hi K's mom,

I'm not sure where you are located or what Children's Hospital you are going to for her issues, but if you are anywhere near Children's Hospital of Wisconsin. They have a multiple disciplinary musculo-skeletal team, that evaluates the entire situation. It consists of orthopedics, oncologist, interventional radiologist and the anesthesiologist would get involved. They evaluate the best way of treatment, be it surgery, or IGT( Imgage guided therapy) such as sclerotherapy of the bone tumor or Radiofrequency ablation. Both of which would have a quarter of the post op healing time as surgery. The anesthesiologist would plan out the best course of options for her comfort while weighing in the POTS.

Good thoughts coming your way, hope you can find the answers you need ((hugs))

Jennifer