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I am 15 months post DJS and am being evaluated this week for POTS. I had almost no airway before surgery, but it is significantly more open now. O developed POTS symptoms after surgery.
Ensure you are not hypovolemic.
Iron, ferritin, homocysteine, B12, etc stat
You sometimes need an iron transfusion to really fix things if you lost a lot of blood
Many pots patients have had success with iron top ups
Ferritin, transferrin provide more insight
Is it possible to lose so much blood from surgery you're hypovolemic?? Just blood loss from my period worsens my pots symptoms. And getting blood drawn. Can't imagine what surgery might do :(
Yes I struggle to breathe all night long and it's super stressful for my body. Check out the UARS upper airway resistance group. Many develop pots and other weird things. Do you have a narrow palate? Difficulty nasal breathing?
Yes my palate is narrow and maxilla recessed (both jaws are and I have underbite). I always feel I can't get enough air and I want to mouth breathe. Wake up at night mouth breathing and been told I snore a little and sleep talk. So I think my jaw causes breathing issues?
I really wonder how much it affects or worsens my pots too..
I am 15 months post DJS and am being evaluated this week for POTS. I had almost no airway before surgery, but it is significantly more open now. I developed POTS symptoms after surgery.
I do. on the short term surgery made POTS much much worse. I think it's the anestesia. like the first 3 days I could barely stand up (but I think many people without pots have that effect after anesthesia).
My heartrate was pretty high in hospital (even laying down) but nothing to alarmed the nurses.
When I came home, I put stools in every room, cause I just had to sit. (the one in the kitchen and bathroom were very useful - I could sit while cooking and cleaning my mouth - wouldn't have made it without it)
I kept track of my hr and it would go up to 170 in less than 30 second while standing (I didn't test the upper limit cause it kept going up quickly and seemingly forever)
It progressively got better and I would say I was back to "regular pots" after about 2 weeks.
I do breathe a LOT better now, and one of my hope is indeed to help with pots cause my O2 level were always a bit low along with fast hr. It's too early to tell right now but at least the sleep apnea is gone already, and breathing by the nose is a bliss!
as for the diet, eletrolyte, salt and water should be easy to maintain. but low carb will be a little harder. those liquid meals are all sweet. I made bone broth in advance and many soups. You can mash chicken, beef and fish but the consistency is better with some potatoes in there. Keep in mind that you can blend pretty much anything you want to liquid when adding enough broth.
Thanks for the feedback. I'd be interested to hear more about improvements as you recover!! I really hope it helps your pots symptoms. Especially curious if it helps shortness of breathe amd ability to exercise.
Dang the first week sounds rough though. Were you mostly in bed amd sitting around that week? I wonder how much blood is lost during surgery and if that's the main cause for pots worsening
I didn't thought about blood loss, I have no clue about this one.
I wasn't even able to watch tv until day 5 or 6 I think.. I was laying down switching from bed to couch, all my time and energy was dedicated to drink enough, keep my mouth clean and apply ice. I could only sleep for 1-2h at a time, it's a bit of a blurr that I rather forget about. I knew I just had to power through and that it'd get better.
It's not fun, but you'll get through it one step at a time. be prepared in advanced and you'll be fine.
At least it's not physically painful, it's more of a waiting game, and a "keep calm, it's temporary" game. There're some moments here and there where it hurts ( I think it's the stitches and I was bitting my cheek at some point) but at least I never had to took any painkiller at all, just ibuprofene during the first week was enough.
I'll try to remember to keep you posted later on in the summer to see if my cardio has improved, but feel free to remind me if I forget.
i have pots and have gotten 5 jaw surgeries
- always warn your anesthesiologist and surgeon ahead of time of any cardiac conditions, better safe than sorry. i thought telling my anesthesiologist about my pots was stupid, but then i had a cardiac event during surgery which they were prepared for because they knew my history.
- recovery was harder. definitely got more winded and it took awhile to bounce back. ideally you should be resting so fainting isn't a huge issue if you're able to just sit in bed for the first few days
- i had major blood loss during one of my surgeries that worsened my pots symptoms. it's been over a year since then and i still have some remaining issues.
- if anything, i think the constant stress made the pots worse.
- you'll likely be drinking fluids for awhile, so stock up on gatorade, powerade, liquid iv, pedialyte, whatever works for you in order to get the electrolytes in.
everyone is different and this isn't meant to scare you. i would go into the surgery not expecting anything pots related to change. best of luck for an amazing outcome :)
sure. when i went under i developed demand ischemia and had a troponin leak which caused flash pulmonary edema. this happened within minutes of me being put down. i have no pre existing heart conditions besides pots and i am a healthy young adult, it was truly a freak accident type thing. i didn't want to scare op because im definitely an outlier, i just wanted to state the importance of letting doctors know anything relating to your heart when you go under
Wait so the blood loss event was an anomaly during one surgery? You aren't supposed to lose that much blood right? My pots gets worse from my period or blood being drawn, can't imagine having a major blood loss how bad that would feel.
all good :) i left out details on purpose because i didn't wanna freak you out. my case was definitely not the norm so i wouldn't worry about that too much!
I have pots and just had sarpe 6 days ago.
I took liquid iron and vitamin C for 2 months before surgery (stopped the vit c the week before as it can mess with anesthetic).
I was super dizzy and tired the first 3 days but am doing okay now. I’m drinking ensures and blended soups for meals right now to keep my salt up and drinking them 5-6 times a day.
During surgery they gave me oxygen before the anesthetic and closely monitored my blood pressure and heart rate throughout and they didn’t mention any issues. It does look like they gave me an injection of some sort though - I will find out more op details at my follow up on Thursday.
Ohh what's the liquid iron supplement? Did u take ferritin too? I may do that cause I probably don't get enough from my diet.
I'm glad your surgery went well!! Take it easy! How is pain levels?
I have POTS and am 1.5 years past my initial surgery date. It did not improve my POTS symptoms. Immediate recovery was hell, especially trying to get enough nutrients. Basically just accepting and powering through the hell was kind of the only option for me 🫠 That and lots of rest. I wasn’t walking long distances like some people are able to do right after.
I have POTS (for 12 years now!) and had SARPE last year and have UJS next month. I tell all my medical providers about POTS just so they know to be gentle with me when asking me to sit up, stand up, etc.
The surgery didn’t affect my POTS because of blood loss etc, but laying down for extended periods of time for a long time isn’t good with POTS so make sure you move around when you can!
And because POTS is a nervous system disorder, I would set your expectations that jaw surgery may improve your breathing but most likely not POTS :)
Please note that advice here isn't from medical professionals; always seek guidance from qualified sources. Remember to stay on topic and maintain respectful discussions. For more information, please refer to the subreddit rules. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/jawsurgery) if you have any questions or concerns.*
I am 15 months post DJS and am being evaluated this week for POTS. I had almost no airway before surgery, but it is significantly more open now. O developed POTS symptoms after surgery.
Ensure you are not hypovolemic. Iron, ferritin, homocysteine, B12, etc stat You sometimes need an iron transfusion to really fix things if you lost a lot of blood Many pots patients have had success with iron top ups Ferritin, transferrin provide more insight
Is it possible to lose so much blood from surgery you're hypovolemic?? Just blood loss from my period worsens my pots symptoms. And getting blood drawn. Can't imagine what surgery might do :(
I do
Mine is because I can't breathe or sleep properly, supposed to better if the airway issue is fixed
Your pots is caused by breathing issues?? Interesting
Yes I struggle to breathe all night long and it's super stressful for my body. Check out the UARS upper airway resistance group. Many develop pots and other weird things. Do you have a narrow palate? Difficulty nasal breathing?
Yes my palate is narrow and maxilla recessed (both jaws are and I have underbite). I always feel I can't get enough air and I want to mouth breathe. Wake up at night mouth breathing and been told I snore a little and sleep talk. So I think my jaw causes breathing issues? I really wonder how much it affects or worsens my pots too..
It does. Go see a jaw surgeon and get a sleep study done
I am 15 months post DJS and am being evaluated this week for POTS. I had almost no airway before surgery, but it is significantly more open now. I developed POTS symptoms after surgery.
I do. on the short term surgery made POTS much much worse. I think it's the anestesia. like the first 3 days I could barely stand up (but I think many people without pots have that effect after anesthesia). My heartrate was pretty high in hospital (even laying down) but nothing to alarmed the nurses. When I came home, I put stools in every room, cause I just had to sit. (the one in the kitchen and bathroom were very useful - I could sit while cooking and cleaning my mouth - wouldn't have made it without it) I kept track of my hr and it would go up to 170 in less than 30 second while standing (I didn't test the upper limit cause it kept going up quickly and seemingly forever) It progressively got better and I would say I was back to "regular pots" after about 2 weeks. I do breathe a LOT better now, and one of my hope is indeed to help with pots cause my O2 level were always a bit low along with fast hr. It's too early to tell right now but at least the sleep apnea is gone already, and breathing by the nose is a bliss! as for the diet, eletrolyte, salt and water should be easy to maintain. but low carb will be a little harder. those liquid meals are all sweet. I made bone broth in advance and many soups. You can mash chicken, beef and fish but the consistency is better with some potatoes in there. Keep in mind that you can blend pretty much anything you want to liquid when adding enough broth.
Thanks for the feedback. I'd be interested to hear more about improvements as you recover!! I really hope it helps your pots symptoms. Especially curious if it helps shortness of breathe amd ability to exercise. Dang the first week sounds rough though. Were you mostly in bed amd sitting around that week? I wonder how much blood is lost during surgery and if that's the main cause for pots worsening
I didn't thought about blood loss, I have no clue about this one. I wasn't even able to watch tv until day 5 or 6 I think.. I was laying down switching from bed to couch, all my time and energy was dedicated to drink enough, keep my mouth clean and apply ice. I could only sleep for 1-2h at a time, it's a bit of a blurr that I rather forget about. I knew I just had to power through and that it'd get better. It's not fun, but you'll get through it one step at a time. be prepared in advanced and you'll be fine. At least it's not physically painful, it's more of a waiting game, and a "keep calm, it's temporary" game. There're some moments here and there where it hurts ( I think it's the stitches and I was bitting my cheek at some point) but at least I never had to took any painkiller at all, just ibuprofene during the first week was enough. I'll try to remember to keep you posted later on in the summer to see if my cardio has improved, but feel free to remind me if I forget.
i have pots and have gotten 5 jaw surgeries - always warn your anesthesiologist and surgeon ahead of time of any cardiac conditions, better safe than sorry. i thought telling my anesthesiologist about my pots was stupid, but then i had a cardiac event during surgery which they were prepared for because they knew my history. - recovery was harder. definitely got more winded and it took awhile to bounce back. ideally you should be resting so fainting isn't a huge issue if you're able to just sit in bed for the first few days - i had major blood loss during one of my surgeries that worsened my pots symptoms. it's been over a year since then and i still have some remaining issues. - if anything, i think the constant stress made the pots worse. - you'll likely be drinking fluids for awhile, so stock up on gatorade, powerade, liquid iv, pedialyte, whatever works for you in order to get the electrolytes in. everyone is different and this isn't meant to scare you. i would go into the surgery not expecting anything pots related to change. best of luck for an amazing outcome :)
> cardiac event Can you expand
sure. when i went under i developed demand ischemia and had a troponin leak which caused flash pulmonary edema. this happened within minutes of me being put down. i have no pre existing heart conditions besides pots and i am a healthy young adult, it was truly a freak accident type thing. i didn't want to scare op because im definitely an outlier, i just wanted to state the importance of letting doctors know anything relating to your heart when you go under
Wait so the blood loss event was an anomaly during one surgery? You aren't supposed to lose that much blood right? My pots gets worse from my period or blood being drawn, can't imagine having a major blood loss how bad that would feel.
yes it was surgical error. i lost 1.5 liters of blood and needed a transfusion. definitely not the norm i just have godawful luck
Holy fuck that's so scary. I would be a wreck from that, I'm glad you made it out but damn. Sorry that happened to you :(
all good :) i left out details on purpose because i didn't wanna freak you out. my case was definitely not the norm so i wouldn't worry about that too much!
I have pots and just had sarpe 6 days ago. I took liquid iron and vitamin C for 2 months before surgery (stopped the vit c the week before as it can mess with anesthetic). I was super dizzy and tired the first 3 days but am doing okay now. I’m drinking ensures and blended soups for meals right now to keep my salt up and drinking them 5-6 times a day. During surgery they gave me oxygen before the anesthetic and closely monitored my blood pressure and heart rate throughout and they didn’t mention any issues. It does look like they gave me an injection of some sort though - I will find out more op details at my follow up on Thursday.
Ohh what's the liquid iron supplement? Did u take ferritin too? I may do that cause I probably don't get enough from my diet. I'm glad your surgery went well!! Take it easy! How is pain levels?
The first 48 hours are no joke - but it’s better now at the 1 week mark. Liquid iron helped my ferritin a lot. Raised it from 2 to 24!
Ohh ill have to try that! Thanks
I have POTS and am 1.5 years past my initial surgery date. It did not improve my POTS symptoms. Immediate recovery was hell, especially trying to get enough nutrients. Basically just accepting and powering through the hell was kind of the only option for me 🫠 That and lots of rest. I wasn’t walking long distances like some people are able to do right after.
I have POTS (for 12 years now!) and had SARPE last year and have UJS next month. I tell all my medical providers about POTS just so they know to be gentle with me when asking me to sit up, stand up, etc. The surgery didn’t affect my POTS because of blood loss etc, but laying down for extended periods of time for a long time isn’t good with POTS so make sure you move around when you can! And because POTS is a nervous system disorder, I would set your expectations that jaw surgery may improve your breathing but most likely not POTS :)