I cried a lot today. Surgery on Monday is postponed. I went to my pre-op appointment yesterday. The intake doc was super nice, but after looking at my complicated health history wanted me to meet with the anesthesiologist to discuss my cervical instability and chiari malformation.
The anesthesiologist was also wonderful. He was well informed on EDS, Chiari malformation, and cervical instability. However, he explained some things to me that I wasn’t aware of. To do my hip surgery they would generally do an epidural. But I’ve been diagnosed with Chiari since my last hip surgery and it is contraindicated because it makes chiari worse. (This explains some things after my last hip surgery). If they can’t do an epidural, the other option is general anesthesia. To do that, they need clearance for me to be intubated. Since I also have cervical instability, it can complicate the process/risks of intubation.
Where I was supposed to have the surgery done was hospital that is mostly outpatient. But now I have become a high-risk patient. They’ll only do the surgery in a major hospital where I would need to stay for a couple days for monitoring. However, they won’t even do the surgery until I get clearance from my neurosurgeon that it is okay to intubate with my cervical instability.
SO, I called my neurosurgeon. They said they should be able to send a letter of clearance, but the neurosurgeon isn’t back in the office until Monday. So a clearance letter won’t get to my hip surgeon until Tuesday at the earliest.
I truly do appreciate that they are being cautious, and I’m grateful that the anesthesiologist knew so much. Honestly though, I just feel really stuck right now. I can’t get my life back together until I get this surgery. I feel like I’m on a hamster wheel just running in circles for nothing. Also, this whole process has made the seriousness of some of these diagnoses really sink in.
Intellectually I know this was a Godsend. The lack of education from some of the docs up to this point could’ve put me at serious risk. For now though, keep my heart in prayer. I’m feeling frustrated, and inpatient. And anxious. So anxious. I’ll update when I have a new surgery date
#FAI #hipimpingement #EDS
#ehlersdanlossyndrome #POTS #MCAS #mastcellactivationsyndrome #CCI #craniocervicalinstability#dysautonomia #hashimotos #chronicillness #spoonies #alopecia #thespooniesisterhood #chronicillnesswarrior #chronicfatiguesyndrome #CFS #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpain #buildabridge #ittakesavillage