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Anesthesia and Dysautonomia


DizzyGirls
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I'm just wondering if anyone else has noticed this...???  Anesthesia has a calming effect on autonomic symptoms and other things related to our illnesses.  My daughter has Dysautonomia, EDS, and a very strange development where she just falls.  The connection in her brain doesn't keep the signal to her legs in tact (starting to affect her arms, too).  She's developed a new symptom where she can't walk straight, but her brain makes her walk in tight circles or backward!!  When she starts going in circles, I have to grab my arms around her and grab her to keep from falling into the TV, or a window.  If you interrupt her while she's walking, she falls or starts to go in circles.  Last week she had an MRI of her brain; cervical, thoracic, and lumbar spine, as well.  After the anesthesia was wearing off, she got up to go to the restroom and she didn't fall, she walked in a straight line, no walking backward or in circles.  This lasted for about 5 days until she started going backward and in circles again.  She's still not falling much, but her direction is going back to where it was.  Anybody ever have any positive things come from anesthesia?

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YES!!! I had surgery almost 2 years ago and I wish I could go back! In the past I had surgery (prior to Dys diagnosis) & it wasn't a bad experience but it wasn't great either. So this last surgery (hysterectomy) was so scary for me. I didn't know how my body would react. Well, I woke up in the PACU and saw my anesthesiologist, waved him over, was ready to jump out the bed. I was talking, I was happy. I slept some because they gave me a dose of pain med before going to my room but once I was in the room and awake from surgery: I was GREAT! I never felt so great. Even though the pain from the CO2 hurt, I was so energetic and at ease. So much so that I'm ready to have surgery again! LOL! Then, the further away from surgery I got, the worse I felt. I have had an EGD once since then and received Propofol (Michael Jackson drug) & well, again, I felt really good afterwards. I chalk it up to the anesthesia really calming the nervous system. 

I hope your daughter gets better! That must be hard to have her mobility affected. Prayers sent.

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Now that you mention it, I had a ton of energy after my surgery and can't remember any dysautonomia symptoms acting up. I don't think I actually made the connection at the time because I was a bit loopy on pain meds. But the anesthesia definitely could have been behind it. 

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Going to our neurosurgeon tomorrow and am going to tell him what happened.  I would hope that it will narrow some things down for him.  The further away from this she gets, the worse she's getting again, too.  There is such a thing as a happy medium, too.  My oldest daughter just had multiple spinal fusion surgery (9 to be exact) and after 8 hours of surgery, her POTS was a bit of a problem for the next few days, but after that, she was enjoying quite a few days, also, with a calmed autonomic system. 

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The daughter I'm referring to in this post had high saturation oxygen for a pneumomediastinum (blister in her lung).  People with EDS can get these.  We had gone to our local ER and they had given her some oxygen.  The ER doc on duty said that they see this in people with connective tissue disorders, had anyone ever suggested that she had one.  Of course I said that's what they were looking into for her.  The oxygen made her feel really good.  It was for 30 minutes for 4 days and darned if my memory forgot what the oxygen level was.  Well, anyway, the oxygen helped get rid of the gas that had formed outside her lung and into her upper body and neck.  Her skin was really crinkly!

Good idea!!

 

 

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I had a recent surgery and felt FANTASTIC afterwards.  I woke up from anesthetic feeling great, but after about 10 minutes the pain kicked in and it took them a while to get it under control.  I couldn't walk unassisted at the hospital, but by the time I felt incredible.  I suspect i felt so good because I had 4 liters of IV saline.  I felt terrible the next day with normal post-op pain and POTS got worse through the next 2 weeks from deconditioning since I wasn't able to return to normal activity right away.

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  • 3 weeks later...

The only time I felt great was after I delivered my second baby. Had nothing but nitris but a tough delivery after I sailed through labor. After I came off the high, I kept getting faint. I think that's when my POTS actually started. They (nurses anyway) thought I was hypoglycemic. I couldn't eat enough food! Doc poo-pooed it. It seems to happen alot with strong drugs too. I'm super sensitive.

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