Thursday, October 16, 2008

Nearly forgot about this little slap in the face . . .

I got this letter from my neurosurgeon (actually, a form letter with just my name written in) just before Thanksgiving. It made me laugh and steam at the same time. I guess all I can do is laugh. If anyone doesn't want to go back and read the past year, I'll give a short summary:

I have a vagus nerve stimulator implanted in my chest to help lessen my epileptic seizures. The battery in my old one went dead last year and I needed this surgeon to replace the whole unit. I waited 5 whole months from when my neurologist told the surgeon about it, until it was done. It was an "urgent" surgery (ha ha ha). The surgery was even cancelled, with no apparent notice, the night before in October 2007. My seizures got significantly more frequent and serious as I waited for surgery. I ended up not being able to leave my house for 3 months due to seizure frequency. I finally had it done in December of 2007. The surgery ended up being botched in some way (ha ha ha), and the stimulator ripped through the bottom of the "pocket" in my chest, leading to the wires into my brain PULLING when I move my neck. It needed to be fixed to prevent either wire breakage (dangerous) or nerve damage (dangerous). I signed the consent in March 2008 (3 months after the initial surgery) and to this date, I am still waiting with not a WORD from the surgeon's office.

Did I also mention that when I saw the surgeon for the second time, that I should just "get used to it," and "not move my neck?" He also said that he had seen worse "disfigurements." I wasn't even worried about the "disfigurement." I was worried about the warnings my neurologist told me (he is the expert in this technology) about the vagus nerve being severed or damaged by the tension and the wire breaking and possibly cutting the carotid or jugular. That's what I was worried about. I wasn't even worried about the constant pain I have over the stimulator site as it moves loose in my chest, ripping scar tissue with movement, and the swelling. All I was worried about was the dangerous stuff. The surgeon didn't want to do the surgery initially, until I told him I trust my neurologist and I am going with HIS recommendation.

I ended up telling my neurologist on my last visit that I was getting a little frustrated with my life being on hold for a year and a half (the initial wait for the replacement and this wait for the repair). I said that maybe everyone just assumes that, as an epileptic, the surgeon must assume that I am not working and can afford to wait endlessly. I also made a polite phone call to the office (got the answering machine) stating that I would like some news on a potential date or timeline, as I have a career and would like to make future plans.

I ended up getting this letter after the inquiry through my neurologist and my personal inquiry:

(dated June 2008, but received in September 2008)

Dear Carrie (Carrie written in pen, the rest a form letter),

We are writing to let you know, that we fully understand your frustration and disappointment at the length of time you have been on our elective waiting list. In addition to the ongoing pain and discomfort that you are enduring, we realize that waiting for a surgery date also results in changing personal arrangements made with the workplace, home environment, relatives, etc.

We also hope that you will understand, that the specialty of Neurosurgery is one that deals with many life and limb threatening emergencies i.e. brain hemorrhages, tumours, strokes, aneurysms, etc. Our speciality is very unpredicatable, and obviously, patients with more serious illnesses, must get priority in the operating room. Also, our speciality has insufficient access to operating room time. This shortage has impacted all of the neurosurgeons practicing in Ontario.

Despite these problems, the elective waiting list for neurosurgery is considerably less than that for other specialities i.e. orthopaedics, where the wait for hip and knee replacements is over 12 months in most centres.

We continue to monitor our waiting list every week, and have not forgotten your case. We attempt to be fair in evaluating patient priorities, and you can be reassured, that we will contact you directly when a date is available. Thank you for your ongoing patience.

Yours very truly,



I love how this letter makes it sound like I am getting a mole removed and I should just wait like a good little girl. I am very, very lucky my employer has kept me on, not doing direct patient care for over a year now.

Sooooo frustrating. I hope he doesn't decide to do this after January (when I start my 1/2 marathon training). That would really, really, suck.


Sonia said...

Eh Carrie!!!!!!!!! I just stombled through your blog!! Welcome to the blogosphere =)

Sorry to read that your surgery is taking more time than was anticipated.... hope it'll come through very soon. Very frustrating indeed....

Kelodie said...

Oh my God, this must be so frustrating! I hope they get you in soon...