Thank you for sharing your experience with surgery. I see my neurosurgeon tomorrow.
Im a wreck especially because I'm still battling infection from my surgery on L2-to L5 on jan 27th. Not ready to jump into another surgery til this infection clears up.
I have severe stenosis and bone spurs and bulging disc's. On 5 of my disc's in neck.

@A MySpondylitisTeam Member. Awesome Chatgpt suggestion to Jan Drew!

I met a lady with Lupus a couple years ago who told me that her Rheumatologist spoke with her surgeons prior to surgery and told them the necessity of keeping her on low dose prednisone throughout the process because otherwise the excessive inflammation would inhibit recovery. While inflammation is indeed a crucial necessary part of healing, our bodies will still produce enough of that despite low dose (10mg/day taken as 5mg 2× day) prednisone. If I ever undergo the bright lights again I will insist on it. They will just have to take extra precautions and be prepared for the bleeding that may be more than typically experienced. We cannot be treated like the average surgery population when we have autoimmune inflammation on board. Its not like we're that rare, there are millions of us, the medical staff just needs to be prepared better for our extra needs, like longer recovery times post op and at home.

I hope you get the good to go call for your trip. I imagine you'll be ok. My father in law previously mentioned had advanced Parkinson's and was 80 years old going on a Mediterranean cruise. They let him go. Just get that added travel insurance to get you treatment where you go, and medically assisted back home if needed. Make sure they include travel for your travel companion (family) along with you. Yours in better health P 😌 🙏

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It makes sense that having an autoimmune disorder would change expected outcomes from surgery. Its too bad that Drs don’t know this. Every time I have had surgery i am slow to come out of it and there are complications.
Inflammation in our bodies always presents a challenge, more so than people who don’t have autoimmune disorder.
Good luck with your hips!
i leave in a few weeks. But I have to get thru Drs appts before going. Any one of them
could derail the trip. I hope not!

@A MySpondylitisTeam Member. It is my pleasure to help Drew. Trailblazer? More like fear of the OR, although stem cell transplants are performed in the OR on an outpatient basis. Honestly, it is an experienced fear of anesthesia. I've had 16 surgeries over the years, 11 under anesthesia. A couple of them developed serious infections. And I absolutely NEVER heal as easily or quickly as the surgeons and their staff expect me to. I suspect they are not familiar with autoimmune conditions. Our bodies will always produce an excessive body wide immune response to any injury, especially surgical injury. It is an enormous shock to the entire system. I always get woken up and immediately go into convulsive shaking head to toe. They say it's a reaction to the anesthesia. Of course it is! They kill us, then bring us back to life. Many patients are not aware of that fact. The reason the anesthesiologist is a separate dr present in the OR is because they are schooled in the art of death and resurrection. Pretty shocking to contemplate huh? But that is what is necessary to keep us from twitching under the knife. Even sleeping bodies will do that, just from dreams. The meds to knock us out are given to stop ALL brainwave activity. That's why they breathe for us in the OR with the airway intubation. I read in AARP a few years ago about a study conducted on full term patients of dementia that an estimated 80% of the dementia patients committed to full care are the result of accumulated hours under general anesthesia in the OR. Not all transmission in brain activity reconnects after it has been turned off. Thus the brain fog. Brain fog is inflammation and damage in the brain. Another compelling reason for us all to determine the actual causes of our systemic inflammation from autoimmune disease. And now, my latest endeavor is to avoid the bilateral THR surgeries I was told I need yesterday to correct what is likely congenital hip impingement. Heavy sigh. At least I caught it before extreme erosion to my hip joints and irrecoverable herniation of my lumbar discs. I must get on top of it nonsurgically because inflammation from surgery to the area will likely inflame the tissue around nerve sheath tumors in my cauda equina and result in cauda equina syndrome, necessitating an emergency technical neuro surgery to save lower body function that includes pooping. Can't have that. Always a challenge. The more we share, the better we can prepare. Leaving it all up to the drs is folly, unfortunately.

On a happier topic, when's your trip? I sure hope you live each moment of it to the fullest. We never know when it's our last opportunity to live the good life. Live in the moment and wherever you go, go with all your heart. Words I began living by on 9/12/2001. 😔. Yours in better health P 😌 🙏

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