Wednesday, February 29, 2012

Revision Scheduled!

Today I finally got the phone call I've been waiting for... my revision has been scheduled for March 10th! It's not my actual birthday, but it's very close, and I told my neurosurgeon's scheduler it was the best gift I could have gotten. She thought that was odd. I guess you have to go through it to understand what I mean.

The good: the date falls on the first weekend of my mom's two week spring break, so I will have someone to take care of me. Also, my neurosurgeon doesn't normally do surgeries on Saturdays, so I guess he's making an exception for me, which is super sweet. The bad: my Medtronics rep just so happens to be pregnant (with twins, congrats Chanie!) and her baby shower is the 10th, meaning I will have to have another rep for the surgery. This makes me very nervous. Last revision I had someone other than Chanie and it was a damn mess. Also, Chanie was supposed to help me convince my neurosurgeon I need the battery pack moved to my chest, and now I'm concerned that message won't be conveyed. I cannot imagine waking up from surgery with the battery pack still in my stomach.

I am relieved. I was getting antsy waiting. Now I just need to straighten out the Medtronics rep situation and request a hospital stay from the neurosurgeon's office. I'm not sure if they expect this surgery to be outpatient, but I will be staying at least one night. I imagine I will be in more pain than any of the other surgeries since it is basically my trial surgery, implantation and last revision all wrapped up in one. I'm actually looking forward to it because that pain is temporary, these headaches are never ending.

Thursday, February 16, 2012

...and a wild ferret in the barbecue.

I went to my neurosurgeon today and got confirmation I need a second revision. It's actually for a different reason than I thought though...the lead in my forehead (supra-orbital area) has moved. It's most likely because the battery pack has tilted, which pulled all the wires tight. I did notice the sensations were different, but when it started cutting out I just turned it off for good, so I didn't consider that the lead might have moved. I'm going to try to get a copy of my x-rays to post so everyone can see exactly what I'm talking about.

My neurosurgeon wanted to put the battery in a mesh-type pouch and put it back in my stomach but I said no way, no how. That area just isn't working for me and I don't want to have to go through another revision before he realizes it too. I understand his point, there is a lot of movement in the chest area, but there are just too many wires running too many feet to make it worth keeping it in my stomach. I talked to my Medtronics rep alone and she agrees that it should absolutely be moved. And since they have to re-tunnel the lead anyways, why not change the location too? We're going to keep the same non-rechargeable battery though because apparently the size isn't too much different, and trying to charge the battery while it's in your chest is supposed to be a real pain.

I don't yet have a surgery date, or even a general idea of when it might happen. I think the worst part is waiting. I'm not getting any pain relief from the stimulator right now, which makes this all more difficult to deal with. But overall I'm actually doing alright. I would rather not have to go through it, but in the end it's worth it.

So I got home from my appointment today and found a wild ferret in my mom's barbecue. It made me laugh. Only in my life would I get news I'm going to have another brain surgery and then find a ferret. They are illegal in California, so we called animal control who came and picked it up. Little known ferret fact: they spray a foul smell much like skunks when they are scared.

Sunday, February 12, 2012

Revision Déjà Vu

This post is hard for me to write. I have to have another revision. It seems my battery has moved again and a wire pulled out, same as last time. I noticed something was off about two weeks ago when it started hitting a nerve and sending tingling through my scalp, then I needed to turn my stimulator way up to get pain relief, and Tuesday it began shorting out depending on my position. I called my neurosurgeon's office Wednesday crying, asking for an appointment. They didn't have anything open until March 8th, so I then begged and they created an opening for me the 16th. I had to get in as soon as possible. I'm in so much pain right now and I can't imagine waiting a month for an appointment and then another month until surgery.

As soon as I got an appointment I started packing my stuff to make the trek to Sacramento. I had to drop out of my law class, postpone my agility training with Dakota, and stop my volunteer work with the public defender's office. All three of these things are equally important to me and it makes me angry I have to put my life on hold again. I am lucky my law class is offered again next semester, my amazing agility trainer is willing to work with Dakota and me when I get back to Reno so we can catch up, and the empathetic staff at the public defender's office recognized that I am dedicated to being there and asked me to come back once I am well again. Sometimes it's humiliating to share my illness with people I barely know because I don't want to look weak. However, I have gotten some great support without judgement which is appreciated.

I have not yet gotten confirmation that I need a revision from Dr. Boggan, but there is no doubt in my mind. My Medtronics rep knows too. I asked her if having this many revisions is normal and she says absolutely not. Having the battery in my stomach just isn't the right place for me and we're going to have to move it. I assume he'll move it to my chest area, which freaked me out back in May but now I just want it to work! I'm going to push for a rechargeable battery since they are smaller than the non-rechargeable and since it will be in my chest I don't want it totally obvious.

My greatest hope is that this is my last revision for a while and I can have it done before my birthday in March. I realize my healing time will be a bit longer than normal since I'll have two incisions that have to heal and because the wire needs to be re-tunneled, I'm going to be very sore. However, the stimulator gives me such great pain relief when it's working properly. Which is why I am willing to go under anesthesia for the fourth time in a year.

Please forgive me if I'm babbling and/or not making a ton of sense. I'm in a lot of pain and I'm so tired.