I’m wondering how your POTS type symptoms are now?
The only thing tied directly to pots - the increased heart rate on standing - is still happening, but with the move and having other acute concerns I’m not bringing it up to my pcp currently.
I’m still dealing with dizziness (improved since surgery), very occasional nausea (improved since surgery), daily headaches and edema (worsened since surgery despite meds). All of these could be attributed to pots as well.
I’ve lived with a stuffy nose likely caused by polyps (which may have formed due to the ES) for most of my life, and until I got the ES diagnosis I thought it was just allergies.
Well darn. I’m so sorry your are still struggling with these issues. It can really take its toll. Thank you for responding.
1 Like
Oh wow it’s been a while since I updated y’all! My scars are healing nicely and almost disappeared thanks to my EDS (which has now been confirmed, though the exact type will be determined by a blood test - which could take up to 3 months due to insurance). I moved to Boston in late August and have continued skating, making tons of progress there. I’m so thankful for this community, everything I’ve learned and the support I’ve received/given.
Right side
Left side
1 Like
It’s good to hear from you, anharris! How great your incisions look! Excellent news about your advances in ice skating. I’m so glad you’re feeling good & progressing! I hope you like the Boston area. There is so much to do & see there. It would be an interesting place to live. 
1 Like
The scars look really good! So pleased you’re back to skating 
I hope that you can find a good doctor for the EDS…
2 Likes
Nice to see you doing well! I’ve often wondered how you have been since your kind reply to my DM about Dr Omlie. I’m hopeful to get a date scheduled soon but it’s not looking to happen until Feb/March and I can hear the distress in the scheduler’s voice when she had to explain this to me.
So happy to know you’re doing well!
4 Likes
Must be a tough job for the scheduler…I hope that you can get in earlier, have you asked about a cancellation list, or would it not be possible for you to have surgery at short notice?
1 Like
The problem is aligning schedules between the surgeon & the oral surgeon. Paired with full hospital beds & short staffing. Things aren’t very pleasant right now 
1 Like
@Tjmhawk01 Sorry to hear about your scheduling troubles. I can totally relate. I was in the same position last year. I had my first surgery date scheduled for Dec. 4. I had already done my pre-surgey physical. Then the high covid rates hit. My surgery got postponed due to no beds. So it got scheduled a 2nd time in Dec. That also got cancelled. Finally, my surgery was rescheduled for mid Jan. For this one, I got smart! I scheduled my pre-surgery physical for the last date they allowed before my surgery date & the same with my covid test. I was still nervous that it would be cancelled a 3rd time, but it wasn’t! It’s definitely disappointing.
They are good schedulers, though. It will happen, so just try to stay positive. If you can, get some temporary medicine to help with symptoms, if you need to. Keep us posted!
3 Likes
You are so kind! I appreciate this boost so much! I wish I could just get a date…even if it gets cancelled. At least then I know I haven’t slipped through the cracks. I’ll just remain patient - in the long run, this patience is what the medical staff really need right now!
3 Likes
Yes. I heard that one of the hospitals near me has cancelled all surgeries except for same-day surgery. All the beds are filled with COVID patients there, right now. I hope you can get a date soon. Keep us posted!
2 Likes
I hope you get a date soon! When I was scheduling my second surgery the scheduler told me it was harder to find time in the oral surgeon’s schedule than his uncle’s, especially around the holidays. Keeping my fingers crossed for you.
2 Likes