A Camo Vest (Or the Joy of a Good Doctor)

While I was laying in the operating room before surgery my neurosurgeon walked in with a camouflage vest. I was well drugged and thought, "Was he just out hunting? What is in that vest? Scalpels?" It didn't really matter what he used it for; it became a sign of comfort for me. He was showing a side of his personality that made me feel like I was going to be ok.

As we know I was not only ok after the surgery, but better than ever. The camo vest became a joke because my mom thought I had imagined it (for the record I had not; it was an x-ray vest). While in the scheme of things I realize I don't know Dr. Henderson, I do feel there is a bond between patients and good surgeons.

So what does this matter? The truth is I never really trusted my last neurosurgeon. He didn't like me and treated me like I was complaining about pain when I should be thankful I wasn't dying. What he didn't understand was chronic pain was a death sentence for me- at best it was the death of any chance of a normal life and suicide at worst. Dr. Henderson was the very first neurosurgeon who understood that I wasn't having all these surgeries for nothing. He talked to me while looking me in the eyes (instead of walking out the door like the other), he listened to my fears and told me he could fix it without being conceited.

Not everyone will be as lucky as me and have a leading neuro-modulation neurosurgeon preform this surgery. While I wouldn't trade it for anything, I don't know that it is important for everyone. However, I think trusting your doctor is absolutely necessary. Liking them is even better! It's easy for me to say, right? I had a pick of doctors while others can't even get the surgery preformed. But do you really want to have multiple revisions? Recovery can be very difficult, it breaks your heart, and it hurts.

Ok, gushing about Dr. Henderson is over. I had my follow-up today (I'm almost 4 weeks post-op) and I'm doing beautifully. Scars are healed, no infections (first time ever!), and most importantly I'm out of headache pain! My surgical sites still ache, but I have 3-5 weeks left of that. I have been released to do as I like, as long as that doesn't include skydiving. I even got the ok to do yoga again (my old surgeon said no way, never again). I am looking forward to my life for the first time in a long time.

"It was well worth the fight"

I got a call last week saying everything was a go for my surgery. My insurance overturned their original denial (I'm sure having filed with the state had something to do with that). I am extremely lucky that Dr. Henderson's office was patient and didn't cancel.

So I went in Thursday for pre-op. I was able to see my doctor and go over what he was going to do Friday. The first thing he said when he walked in the room was, "I am honestly surprised you made it." I guess I'm one of the only people to get an approval for this surgery out of network. I was proud of us.

I was the first surgery on Friday. The surgery only took 48 minutes, but they spent an hour doing x-rays before it started. Dr. Henderson decided to knock me completely out (which is how it should be at this point. They know where it goes, I don't need to tell them). After it was over he told my mom, "It was well worth the fight." What I'm assuming he meant was: your last doctor screwed up so badly and it had to be fixed. They left the battery pack but removed all the old leads, put in more electrodes, re-tunneled everything, secured the battery pack, anchored the wires better and fixed the terrible scar on my chest. I stayed the night in the hospital for pain relief, but I felt good.

The stimulator is working! And this recovery is going amazingly smooth. I feel great (all things considered). I'm sore, but compared to the last revision this is a vacation. I'm on 1/4 of the pain killers I needed last time, I'm able to get out of bed, and I've been able to do light chores. Since my headaches are now gone I feel better equipped to handle the pain.

I am so happy. I always knew the stimulator could work for me; I just needed a good doctor! I will go into more detail about my experience at Stanford in my next post, and I'll try to write one about what I've learned about getting insurance approval.

Nail Biter

My third revision is supposed to take place in 5 days (May 24th). I haven't written about it because my personal life has been so chaotic. I was under review from Social Security for a YEAR!, I had to drop out of school because my pain has been ridiculous, I have gotten the flu, several sinus infections, a cold then laryngitis, and oh yeah, I am a witness in a criminal trial for an assault that happened ages ago.

So my third revision. I finally found a neurosurgeon to see me, Dr. Jaimie Henderson at Stanford in San Francisco. The appointment went swimmingly and I actually really like him. It's the first neurosurgeon I have met with any bedside manner. I saw him in March and we scheduled my surgery for the end of May. I was thrilled, and even though he is technically out of my network I was told it wouldn't be an issue. HA! I got a call the first of May from UC Davis (the site of my first 6 surgeries) telling me they will not approve me to leave. So I've been running around like a chicken with my head cut off trying to get this approved. My insurance told me this isn't an emergency so they wouldn't even consider my appeal for 45 business days. The odd thing is "severe pain" is considered an emergency and must be put through their 72-hour review. I filed an independent medical review with the State of California to help us, and the lawyer assigned to my case has been great.

First UCD wouldn't give me a reason for the denial, then they said I could go back to Dr. Boggan for another revision. Um, well first he didn't want to see me again and also, why would I keep going back when it's obviously not working? Plus he won't put in the necessary amount of leads (as Dr. Henderson says, "Why would he put in such an antiquated system?!"). So I e-mailed Dr. Boggan and requested he let the insurance know he's done. His ego was too big to do such a kindness. But, ultimately he said he was disinclined to have me as a patient. While I was sad to see it in writing, I already knew how he felt about me. So I thought that was the end...I was wrong.

UCD then said they have another neurosurgeon who can do the surgery. Wait...no, that's not right. Then I heard the name and realized he's the one embroiled in the whole killing people with feces in the brain. No way I would let him touch me, plus he's never done this surgery before. So, despite my severe reservations I saw him on Friday. What can I say? I didn't hate him, but that's mostly because he said it would be best for me to go to Stanford. That's the end, right? No. UCD is now saying I have to see someone at their "sister hospital" which is UCSF. So I called UCSF and tried to get an appointment. Turns out they haven't been affiliated with UCD in years.  I am currently awaiting a phone call from the lawyer to decide our next step.

My conclusion is UCD is just trying to buy time so I have to reschedule. I had no idea they had any say so, however apparently because they are my HMO they do. I was so smug, thinking I was one of the lucky ones since I have never had insurance problems before. I figured since I have the stimulator in they had to pay for it to be revised, and why would they make me go back to a doctor who couldn't do it properly?

Will I have surgery on Friday? Nobody knows. I sure hope so. I want this to work so badly. And while this may sound vain, I was really excited when Dr. Henderson told me he was going to fix my hideous scar. My fingers are crossed, and I can now understand the pain of all the people who e-mail me asking how to deal with insurance companies; they are evil.