Surgery info (updated)

The surgeon is gone for this month and apparently the majority of December but they are working me in the week he's there. My pre-op appointment is the 5th and surgery will be the 6th at 10 am. They're mailing me directions and scripts for basic pre-op stuff. My pre-op appt in Baltimore is going to be various thoracic-specific testing with Dellon and the second surgeon.

Baltimore surgeon update

He had some time so he called yesterday instead of next week.

He isn't sure he agrees with what others feel is the root of the problem, has other ideas, but neither of the possible causes is curable anyway. But he is confident he can fix this. At the end of the call he even told me I can have hope again!

A note was being left for the scheduler so I can get on the books without the confusion that happened this week. He normally sees people for pre-op appointments on Mondays but with the travel involved he said he'll have it worked out for a Wednesday afternoon. He can do the surgery the next day on a Thursday (they only operate Thursdays and Fridays).

So I should know a date Monday!

Dr D sounded very caring, and took his time. He wanted to know about the various brain and spine surgeries, how EDS impacts me personally, why I'm on disability, what I used to do, what my husband does, how old the kids are, and who will take care of them while we're there for surgery. He asked if I ever sent time in Baltimore, etc.

Baltimore, here we come!

It's been a big day around here. I gave the info below to friends this morning and if they see this hopefully no one minds I'm putting it here. There are so many details I can't even think about trying to write it all down again!

The Baltimore surgeon is supposed to be the best in the country for the thoracic issue, the one I mentioned previously that lives in Baltimore but makes AZ trips every 6 weeks or so as they have an office here. I found out last week though that he no longer makes the trips here so they asked me to come there. I said that's fine, there's isn't a "network" with Medicare. Then they dropped the bomb on me and said they don't take Medicare, period. So his nurse wrote him an email about me and the EDS situation, asking if he thought if any of the other surgeons that still make the AZ trip could help me. That was Thursday or Friday.

They called this morning and the surgeon said forget AZ. He wants involved in my case directly and said to bring me out. They'll take care of the Medicare issue through their institute.

I shook about all day because he said get me out there--as in, next week. On the 29th. Of October. In Baltimore.

If I could I would have been bouncing all over the walls. The nurse said the surgeon is going to call me himself within a few days and discuss the trip and the surgery. He wants me to be prepared for what it will be like since it looks like I'll be out there for a week.

Did I mention if after the exam if he decides he can get this done safely, he'll do the surgery that week?

Ok, I admit it. I'm scared and freaking out and wish I could be DOING something productive. Booking the flight (they said wait for Dr and the nurse's next call so they can work on the testing schedule so I know when to be there and when it will be ok to come back, right now only have regular appt scheduled, not the tests), what to do with the kids, the dog, SOMETHING.

Not quite crash and burn but what is this

Dallas is out, at least for now. I'm going to work with someone locally for 6-8 weeks to build as much strength in the area as possible then we'll call him back and talk more about the surgery.

I also talked to Dr Dellon's office in Baltimore. He no longer makes Tucson trips and asked me to come to Maryland. I said it would be no problem given Medicare, only to find out he does not accept it. With the seriousness of the situation they are going to check Dellon's partners since some still make the Tucson run and see if any of them will take me.

I know it isn't a crash and burn but at the same time it rather feels like I've stalled. It certainly doesn't feel good.

Dallas

Dallas nurse called to let me know Tucson finally faxed the papers. Dr G is in meetings this afternoon but she is going to let him know they arrived.

I thought the phone call was good of her.

Whew. Ok. Just keep swimming, just keep swimming...