Need to be Hospitalized for Surgery

Disclosure: As a reminder I don't go back and correct any mental errors while writing because that is true to how my brain works with living with epilepsy. In order to understand this by someone just joining, one example at times I might speak a sentences out oforder, or repeat them, spelling.

Shoulder Surgery Update

Before you read on, to understand this post you need to back and read the previous one.

It was the day before surgery and I as getting last minute things lined up around the house etc. Then I get a call from the Surgeoun's office to tell me they can't perform my surgery as scheduled. I asked right away why, because they had the signed release form from my Mayo Nuerologist saying it was ok to proceed. Plus we already paid the upfront payment(don't even get me started on that one). The nurse, said mam my apologies I am just relaying to you the message. I would encourage you to call your Mayo doctor because I believe it was from there.

What I did next....

I of course called my nuerologist's office, and spoke to his nursing clinical staff, who know me by first name basis, not sure that's a good thing but they are always there. They said to me just as I thought they faxed the release form the day I requested(4 days ago), and sent me a copy as well with the date and time along with my Dr's orders on how to proceed. I thanked them and quickly sent a copy over mysekf to show the surgeon's staff what was sent in case it did by chance go to the wrong area and it was there. This time they told me the PA or the Surgeon needed to speak to my nuerologist diretly not just a signed release form. I asked why, since in my pre-op questions they were well aware of me having uncontrolled epilepsy, and also the concerns of it takes me longer to come out of antheisa. At that time, they said ok we will just need a signed fomr from your dr and needed Brent and I to also sign a form of concent to perform the surgery. All was taken care of along with that DANG LARGE pre-payment neededd to even schedule the surgery.

Ok, now it was time for the persistent slightly over the top Marissa to come out......

When this me comes out, Brent knows as well as anyone you better just let me talk because I will win that battle:), well at least most battles when it comes to advocacy for myelf and others living with Epilepsy. I called Mayo back, and they informed me Dr. Feyissa had already left 3 VM for them to reach him and he had not received anything via phone, the nurses or the portal. I felt bad on their side, but I had to try and get this done to have that surgery done, before it was cancelled. So they sent me, the offical notes from the calls/notes, so that i could pass this along to the PA/Surgeon.

Once again I called the facility back, and they said my surgery had already been cancelled and the PA would be calling me later to explain the siutaion. I was probably a bit firm in my voice back, but was kind as I knew they were just the messanger.

The PA phone call...

The PA finally called me around 5pm, starting by apogizing for the delay. I of course did not feel that was the proper thing for her to start with. Afterall; everyone involved had done what was asked and we get told. Just the day before about the cancellation, which effected many things, even such as meds taken. She went onto say she had been very busy and had not had a chance to speak with my Mayo dr. (she was given my dr's cell number, so she could have called at anytime ,mind you) I replied, ok i understand you are very busy but so is he and he made the effort as he knew this surgery was timely needed, and my medication is timely too for my safety. She apologized again, and said she should have decided earler to cancel/reschedule my surgery when the medical team there had already talked and was concerned of this procedure at their facility. So I asked ok, so when is the surgery planned for now? Her response was I am not sure, nothing is available as of now and we have to move it to the hospital.....WHAT???

Why am I sharing this story?

I wanted to show others, that those of us that live with epilepsy(or another chronic condition) unfortunately; are not treated the "same" as others, even if the proper protocol is done. What rhe PA/Surgeon don't understand is when living with uncontrolled epilepsy there are steps that need be taken prior to any surgery(these are not the ones they give, it's the extra steps given to me by my Mayo dr), and when you did all that was asked of and more and then don't have it.....unfortunately; the added stress just brought on seiuzures the next few days. I was feeling bad for my husband who did all he had to do with work, my Mayo dr/nurses went out of their way to help me, and yet in my head I still felt at fault.

I bring a list of all my current conditions, a list of meds/vitamins I take daily and what time, along with all my dr's phone numbers, along with emergancy contacts info. As you read, I came prepared and it still didn't go as planned. YOU MUST advocate for yourself! Since I did not hear back the following day(as I was told) to tell me when the surgery was I kept calling until they reached me.

THANK YOU TO EVERYONE THAT REACHED OUT THE NIGHT BEFORE &

DAY OF BEFORE WE KNEW IT WAS CANCELLED.

IT MEANT THE WORLD TO ME.

Surgery is now set for November 11th,

at the hospital which is connected to the facility.

TBD on what time that day.

STAY TUNED