Well its been a while.. where have I been.. Frustrated.
So I left off, about to get my myleogram on my lower back so they can then "figure out" what they are going to do to "treat" it.
After I left my massage therapy appt the Day before the scheduled test (did I mention I started getting massages, they are truly a blessing!) I got a phone call from the hospital, " I'm sorry we are going to have to cancel tomorrow, the machine broke down". " But we can get you back in on Monday" Well that's just lovely. Monday would be great except I have a life, I have to do what little work I can, I had this scheduled for weeks, had this scheduled on a Friday, my one day off..arranged for my Grandparents to come down and take me, arranged care for Pokey and so on. If I didn't need the money so bad I would have just said sure schedule me on Monday. Well my life does not work like that. So I had to go out another TWO weeks. I was in tears.
November 6th. My Grandparents come down from Bothell to get me and take me to check in at 9am at Swedish. I get there check in, gown on, slippers on, IV check....."did you stop taking xx medication?".....Yes a week ago ( not to mention this is my joint medication that I have now had to stop twice for a week and my joints are on FIRE by this point, feels like they are fully of prickly cement) "okay and did you discontinue you xxx medication as well?".....What no one said to stop that one, never. Not last time not this time! " Well Wait right here and I'm going to have to call the doctor." My mind is racing now...you have got to be kidding me... call my doctor......The nurse comes in and hands me the phone. I speak with the Doctor. He explains how "someone" was suppose to tell me to stop taking another medication 48 hours before the procedure...blah blah...by this point I am crying. He is nice on the phone and even offers to do the procedure at 8pm if that's what will work with my schedule. Now in my experience as a Surgical coordinator I am fully aware that a Surgeon will tell the patient just about anything, not to be mean, but because they are most willing to do what it takes to get things done, but in reality, there are no nurses, no one in the PACU etc at 8pm which would have been a great time for me to schedule because then it would have not interfered with anything! So I went home and I made some rather angry phone calls.
I guess someone was suppose to go over all my meds from the hospital...check a nurse called and did all that....BUT also someone was suppose to call and go over everything also from my Docs office....no check..no one ever did that at all....either time. So in the end I finally got it rescheduled for the following Wednesday (Veterans Day). I got there and managed to get a parking voucher, a coffee voucher and a cafe voucher, I was glad I spoke up this time!
The myleogram was a bit scary, for those that do not know my only experience with a needle in my back was when I had Pokey. I had two failed epidurals one of which made the left side of my face numb and in the end when we went for the emergency c-section and they were doing the spinal block I had a very rare complication, the spinal block did not stop and it ended up in whats called a "total spinal block". Imagine being flipped over and with your last little breath telling people you cant breath and the paralysis continues to take over your whole body. This is why I was not conscious and intubated when Pokey arrived. Sooooo needless to say I knew this was totally different but even the thought of a needle in my spine just freaked me. They were nice enough to give me some valium before hand and answered ALL of my questions. There were some very uncomfortable times and the worst part was when they "hit a nerve root" in addition to when the contrast is actually injected. The injection gives this very heave sensation and brings on a feeling a very heavy back pain. When you finally go to the CT machine you have to Log Roll a few times and that was not easy but the worst part was over....or so I thought.
Before being discharged about 4 hours later they ask you if you have a headache. I did indeed have a headache but I commonly get headaches so I was not sure if it was just one coming on. I kinda felt like I just needed to get out of the hospital. Well right after I left, i vomited, but I felt better, I was on bed rest for the day and that was that. The next day was pretty much bed rest as well, but I did notice that when I got up I would get a headache, it was not one of my normal migraines or cluster headaches, this was in the back of my head it felt like I needed to squeeze my head very very hard. This just kept getting worse until Saturday when I thought my head was going to explode! When I laid down i would somewhat go away but not completely, and when I sat or stood up it was like I was drunk! My eyes hurt, my ears rang and oh my head. We called the on call doc and they knew what is was right away and had me come right in. They sent me up to the PACU and the anesthesiologist on call performed a bloodpatch because I had a spinal headache due to leaking spinal fluid out of the hole they poked in my spine ( it never closed! They simplest way the doc put it was my brain was bumping against the back of my skull every time I got up because of the lask of fluid ) So they took 25cc's of blood out of my arm and put it right back into the hole in my back. It was immediate relief! I got this warm feeling in the back of my head, very similar to the warm feeling I get on bad POTS days and it was 80% better. It took another couple of hours before I felt back to normal and then bed rest for all of Sunday. By Monday I was back to normal. Whewwww!! What and adventure.
So now I have been playing phone tag with my Doc. I called left a message. He called (as I was in the bathroom!!!!) left a message. I called back first thing in the am left a message, had my phone on me all day and have yet to hear back....oh I called again and left another message...but its now 6 days later. Whatever, Im so fed up with the whole neuro office its unreal. That will be a whole different post and its coming I promise. From day one this office has screwed up and now I pay for it. Now Im lucky that I even have insurance next month and I still have no solution for my problem. Just More problems with my back. Bone spur, narrowing in addition to everything else. I started seeking treatment in August its now almost December. ? Hum. My COBRA insurance rate goes back up to its full 565$ a month next month because my rate reduction from Mr. Obama expires and without my Grandparents I would not have insurance at all. But heres my delima for January, do I continue with the super High rate and fork over the new deductible etc..or do I start over with a new insurance, new deductible, new copays etc...lower coverage..right now I have some of the best coverage out there and can keep it until August of 2010.....if I win the Lottery~!!! All I know is they need to figure out how to fix this darn back in December. Please.