Residual Effects

I've had my stimulator for a  year and a half now, and I find that as time goes on, I use it less and less.  When I initially got it, I had it on all the time.  Now I only turn it on when I need it.  My surgeon's head nurse told me that this is pretty common, and in fact some people get to the point where they no longer need the stimulator.  She said they removed a woman's this fall because she no longer used it!  I still find it hard to imagine getting to that point, but the idea that it is possible is so uplifting.  Now, I have zero medical background, but I'll try to explain it the way the nurse explained it to me.

She said when people have chronic pain, the nerves get used to firing  at a certain location.  The more they do this, the more that becomes almost like a normal process for your body.  Part of breaking the pain cycle is to block that "easy" path that your nerves have gotten used to.  The stimulator helps to disrupt this pain path and make your nerves sort of re-circuit.  If there is a bigger problem causing the pain, your body may find new paths to use.  However, if the pain is partially caused by nerves that are damaged from so much firing, the stimulator may help to give them a break and allow them to heal (yes, nerves can/do regenerate).  I'm sure it's all much more complicated than that, but that was a basic explanation that I got that I thought was worth sharing.

I hope everyone had a wonderful holiday season.  Best wishes to all for a pain-free (okay, let's not get greedy...pain-reduced) New Year.

Breakthroughs

There are a couple of exciting breakthroughs I want to mention for anyone who is interested.  The first doesn't have to do with occipital nerve stimulation, per se, but it's a breakthrough in migraine treatment.  The FDA has recently approved the use of Botox for migraine treatment.  My excitement from this approval is that it shows that there IS hope for new treatments to be approved!

But more importantly, supposedly there will be a nationwide medical trial conducted on nerve stimulators in regards to headache treatment in 2011.  What this means for you:  If you can't get your insurance to cover the stimulator, you can get it paid for under the medical trial if you get accepted.  I, unfortunately, do not have much information regarding the trial.  I do know that the Mayo Clinic has accepted several people but am not sure if the opportunity is only being offered through specific doctors/clinics, or is available all over.  I asked my doctor about it, and she hadn't heard anything about it.  She said she'd do some research and get back to me.  My suggestion would be to discuss the possibility of joining the trial with your doctor ASAP.  If any of you readers have more information regarding this trial, please let me know so I can share it with everyone.

Itching!

So, I've had this stimulator in for nearly 15 months now, and sometimes the thing still itches like crazy.  Initially I thought it was just healing, but after this long I'm pretty sure it will always do this.  It itches under the battery box, where I can't scratch, of course.  To keep my sanity, I had to find a solution.  It seems that a soft bristled brush does the trick...you know, the kind you use in the shower.  You can find one just about anywhere; I got mine at Walgreens.  It doesn't reach beneath the battery of course, but for some reason scratching it lightly over the battery site eases that itching.  Just thought I'd share my tip if any of you with a stimulator have the same problem.

We have been busy busy busy this summer, with lots of weddings and out-of-town guests.  Thanks to my stimulator I've been able to attend and participate in all planned events.  I have to be a bit pickier about the dresses I choose, as I want them to cover my scar, but other than that, I feel like a normal person!  I've been not only working regular hours, but working extra hours, saving up some vacation time for a long trip in the future.  It's good to be living mostly free from pain, even if I am itchy sometimes.

Winning...and Losing

I finally heard back from the insurance company...and I won my appeal!  Hooray!  The final $12,000 of bills should be paid by them this month.  What a relief.  Their letter said they reviewed my case and found an "inconsistency in payment history."  I don't really care what they call it, I'm just glad they are paying it.

My submission to them included a 6 page letter that outlined my struggles with headaches over the past 14 years, how I came to choosing a nerve stimulator, and how it has changed my life.  I also included an outline of the documents I had received from them and how they were incosistent.  Altogether I submitted about 20 pages of documentation.  I guess that did it.  I was told that appeals received from patients (as opposed to medical professionals) are taken more seriously.  That's something to keep in mind if/when you ever deal with an appeal of this sort.

On a separate note, I also wanted to apologize to those of you that have contacted me recently that I have not gotten back to.  My oldest dog was sick the last few weeks and I had him in and out of the vet every few days.  Last Thursday he lost the battle and we had to put him to sleep.  It was very hard but the vet came to the house and made the experience as minimally traumatic as possible, I think.  It's amazing how deeply animals can touch our lives.  That dog was my companion for the last 12 years and although everyone thinks their dog is the best, he was truly exceptional.  It's been a long time since I've lost anyone or anything close to me and I forgot how hard grief is.  Anyway, I haven't been much in the frame of mind to be social but I will get to your emails this weekend.

Chatroom!

I've added a chatroom to the blog...finally!  I hope this will allow some of my readers interact with each other and share their stories instead of just me blabbing at you about my story.  Originally I had wanted to add a forum where conversations could be saved and users wouldn't have to be online at the same time but that's not an option with blogger.com.  There are, however, archives kept of anything anyone types in there so I think that may serve the same purpose.

To find the chatroom, just scroll to the bottom of the page.  It should appear below the  posts. You have to make an account with chatroll.com to use it (sorry!) but it's free .  I think the easiest way to use the chat is to make it a pop-out.  That way you can stay on there while you surf other websites.  To do that, just click on the icon in the bottom right corner that looks like this a box with an arrow coming out of the corner.  You can also go to the chatroom page, which takes you to the chatbox in a webpage layout, if that makes sense.  To do that, click the icon that looks like a blue circle with a green dot in it.  This chatroom web page is also where you can find the chat archives.

Enjoy!

Also, on a separate note, if anyone wants to do a "guest post" about their ONS experience, please let me know and we can certainly arrange that.

Battery Placement

I want to talk a little bit about battery placement as I've had quite a few discussions with people about that recently.

My battery is in the right side of my chest, just below my collarbone.  When I was discussing the stimulator with my surgeon we talked about battery placement.  I didn't really want it in my chest, as I thought the battery would be very obvious and the scar would be more visible.  I suppose this is true, but he told me that having it in my chest is better than having it in my low back/upper buttocks where a lot of surgeons place them for the following reasons, which all made sense to me:

1. It takes about 3 times more wire to run the battery down to your lower back, as opposed to your chest.  More wire means a longer surgery, more disturbance to your body, and a longer healing time.
2. When they put the wires down your back, they go through muscle.  When they go do your chest, they don't go into the muscle, or if they do, it's very minimally.  If you know anything about muscle, it takes a long time to heal, which means having wires runs through it increases your recovery time substantially.
3. There is a lot more movement through your back than there is through your shoulders/chest so with the rear battery placement, the potential to pull your wires loose is much greater, which of course leads to one (or more) revision surgery(s).
4. Charging the battery and using your remote is awkward as it is...having that battery in a place that is hard to reach and hard to see makes using it that much harder (in my opinion).

Speaking to people that have had their batteries placed in their lower backs, I find all these things to be true.  Yes, I have a more visible scar but my recovery was easy compared to what some others have been through.  I've also heard of doctors wanting to put the battery under your arm, but that was a discussion I never had...it was never brought up as an option for me.  I can't imagine having it there...I think it would be terribly annoying!  Therefore I think discussing battery placement options with your doctor is very important.  And if the scar on your chest is the biggest thing holding you back, just remember that it becomes a conversation piece, a way to educate others about headaches and the available treatment options.  Or it can make you look like a badass if you make up a story about how you got in a wicked bar fight.

Relief

I'm happy to report that I'm feeling much better now.  Monday was the last of the really bad days.  Between the stimulator, ibuprofen, and caffeine, I've been able to keep the pain to a minimum all week.  I went to work (and was productive!) and rode my horses.  The only weird thing is that I'm completely exhausted.  I don't know if it's from battling pain or from the medications I pumped myself full of last weekend.  Oddly enough, I think it's the medications.  It sure makes me wonder how I ever got through YEARS of taking all those drugs.

The Worst Week Yet

This past week has by far been the worst one since I got my stimulator last June.  A headaches suddenly came on last Monday afternoon.  I thought it was because I hadn't really eaten all day or because I hadn't had any caffeine after drinking a lot more of it than usual the week before (I was at a meeting all week...had to stay awake somehow).  The stimulator didn't work so I went home, took my Zomig, and went to bed.  Thought it would be okay but I was down all the next day, taking more Zomig along with ibuprofen, which often helps.  I felt a bit better on Wednesday, went to work but still ended up taking my Zomig halfway through the day.  Same story the next few days.  Yesterday (Sunday) I got to the point where I dug out the Vicodin I still have stashed away and took some of that just to try to break the pain cycle.  It worked for a few hours but that's about it so that idea didn't work either.

I know I really shouldn't complain too much because the pain really is nothing compared to what it was last year at this time.  I mean, I'm still able to work for the most part, and I was able to go do a few things this weekend.  But I guess I've just gotten so used to not having pain that I'm now spoiled...if living without pain can really be considered spoiled.  I think it's sad that it is.  Anyway, I've had a few bad headaches (about one a month) since I got the stimulator but I've never had one drag out like this so it's frustrating, and honestly a bit scary.  My mind starts playing that "what if" game:  What if the stimulator doesn't work for me anymore?  What if I go back to all those medications and doctors?  What if I have to have more surgery and more wires?  I try not to do that, but sometimes it's hard not to.

Maybe it's time to go back to some physical therapy...massage, acupuncture, etc., to try to keep these headaches under better control.  Or maybe I just need to move somewhere that has more consistent weather!  Sometimes I think all these spring storms moving in and out affects me.  I hear Costa Rica is nice...

Insurance Update

After my post last month regarding the insurance issues (to put it nicely), I made a LOT of phone calls.  Surprisingly Medtronic, the company that makes the stimulator, jumped right on it and said they would start an appeal case for me.  I didn't even have to do anything!  Talk about good customer service...that company is tops.  I hadn't heard from them in weeks and decided that no news was good news, but then they called the other day.  The rep told me that they had tried to appeal my case but since my other doctor (surgeon) had already appealed it 3 times unsuccessfully, appeals had been exhausted and there was nothing Medtronic could do, so they put the issue back in my hands.  However, the insurance company did tell them that I could submit an appeal myself, and that personal appeals from patients usually weigh in a bit heavier than appeals from doctors (yeah right).  So I am supposed to write them a letter and put everything in it...my history, prior treatments, stimulator experience, and of course why I feel they should pay, including any paperwork I have.  This all seems silly and redundant to me, since I had to give them most of that to get the darn thing approved in the first place but whatever, I guess it's better than dealing with a lawyer.

Being long-winded as I am, I decided that if they want everything, I'll give them everything.  I've already begun writing my appeal and have 5 pages.  I have a feeling it'll be at least 10 by the time I'm done.  They want paperwork?  They'll get paperwork.  I have a lot of it.  Plus I'm a government employee and we are masters of paperwork.

I have a feeling this might turn into a long battle, but I'm ready to fight it.  I still stand by my assertion that $12,000 is nothing to an insurance company, but it's a lot to me and therefore this is worth the effort.

And people think we don't need healthcare reform in this country...

Insurance Woes

One of the most common questions I get from readers is regarding insurance and how to get coverage for your stimulator.  Mine was easy enough...my doctor's office did all the pre-approval work.  But it looks like I jinxed myself by bragging about how lucky I have been to have great insurance to cover my stimulator.  Last week I got a letter in the mail from the insurance company saying they were denying over $12,000 worth of claims.  I had no idea what they were talking about so I just set it aside.  On Tuesday I got a letter from the surgeon's office saying they'd tried submitting my claims several times but the insurance company refuses to pay so it is now my responsibility.  Fantastic.

The charges they don't want to pay for are specifically for the stimulator.  They already paid everything else, including all the hospital costs, as well as many of the surgical costs.  I don't understand how you can pay for 90% of a surgery but not the other 10%.  Don't they do hand-in-hand?

I'd like to know why I sat around waiting for pre-approval for 6 weeks when that approval apparently means nothing.  On the positive side, I have all the paperwork to back up what I say.  On the negative side, I'll have to get a lawyer and go to court to fight this.  $12,000 isn't much to an insurance company so I am hoping they will settle out of court but still, it's going to be stressful to deal with.

I guess I should be happy they covered ANY of the surgery, since it seems like so many companies won't.  But still...the whole thing is really pretty annoying.  I haven't even seen or paid any medical bills in months; I thought this was all resolved.  Grr.

Chronic Pain: Hitting Rock Bottom

I usually try to limit blog posts to things related very closely to occipital nerve stimulation, but I'm now faced with a situation that I want to discuss. It's not directly related to ONS but I think it's important to talk about.

I was informed on Tuesday that my supervisor killed himself this weekend. He suffered from chronic back pain. He only moved here last January, so I don't know his history, but from discussions with him last summer I know he's been to many doctors and tried many things. He had a metal rod implanted in his back at some point so he has more of a history than I can begin to imagine, I'm sure. His condition deteriorated quickly at the end of last summer. He got to the point where he could no longer sit or stand for more than about 5 minutes at a time, so he was essentially a prisoner of his bed. He was taking a lot of heavy-duty painkillers just to get through each day. He was not married and did not have any family in the area. Someone from work would go over once or twice a week but they wouldn't stay long so I think part of his downward spiral must have come from feeling isolated and alone. I guess he decided it just wasn't worth it anymore.

However, I do think he gave up on himself a long time ago. We had a discussion last summer about a doctor's appointment he'd been to and the doctor has said something along the lines of "you need to get something figured out. If you feel this way now (he was in his 40's), how are you going to feel when you are 75?" And my boss said "I hope to god I don't live to be that old." I know people made suggestions to him of where to go for treatment, and offered him transportation but to my knowledge he didn't accept much help.

The moral of this story to me, and why I wanted to share it, is this: no one can help you if you don't help yourself. I understand chronic pain. I've been there. Last winter I myself was feeling extremely low and got to the point where I couldn't envision a future for myself because every day was just filled with pain. I was not suicidal but I certainly was depressed. But I (luckily) got to the point where I got mad, not to the point of giving up. I refused to "live" this way and realized that I had to go find help for myself, whatever that took. That's why I traveled 1000 miles and spent 4 months away from home. And if it would have taken 4 times that long, I still would have done it. I had been to "experts," and no, they didn't help. You have to keep searching until you find the right doctor for yourself. Just because someone is labeled as a specialist or has been treating "your kind of case" for 30 years doesn't mean they can help you. You don't have to stick with a doctor that isn't helping you. I wasted way too much time doing that. If they don't help you, move on and try the next one. But if you just sit around wallowing in misery and self-pity, you will never feel better. No one will come knocking on your door saying "I think I have a solution for you."

Wow, I guess this turned into a bit of a lecture but it's just something that I feel very adamant about. I'm very sad for my boss. In all honesty, I didn't know him very well at all, but it still makes me sad that he felt death was the only way to end the pain. I hope to inspire people to take a different path than that, to give them hope, because you don't have to just give in. But you do have to be willing to help yourself.

A Good Surgical Summary

I stumbled across this site recently and thought it was a very good summary of the surgical procedure involved with occipital nerve stimulation. Much easier to get through than this entire blog since I'm so long winded :) This is from a neurosurgery center in Australia, but it's still pretty much spot-on with what goes on here in the States.

List of Doctors for Occiptial Nerve Stimulators

Here is the list I have complied so far. I know there are a few others out there, I'm still waiting on a few responses from people as to those names. I will add to this list as I collect more names. Some people have also found it beneficial just to call Medtronic (one of the companies that make the stimulators) directly and ask if there is a doctor available in their area. Please let me know if you have anyone to add to the list! And thank you to everyone for your input and help!

NOTE: I cannot, and do not, vouch for any of these doctors, except Dr. Elborno as he is the only one I have any personal experience with.

Dr. Ahmed Elborno
Midwest Academy of Pain & Spine
Chicago, IL

Dr. Miles Day
Lubbock, TX

Swedish Pain and Headache Center
Seattle, WA

Mayo Clinic
Scottsdale, AZ

Elliot Pain Center
Manchester, NH

Dr. Thimineun
Comprehensive Headache & Pain Center
Derby, CT

Dr. Nagy Mekhail
Cleveland Clinic
Cleveland, OH

Dr. Linqui Zhou
Woodbury, NJ

Dr. Peter Pahapill
United Neurosurgery Associates
St. Paul MN

Dr. Ashwini Sharan
Jefferson Medical Center
Philadelphia, PA

Dr. William Witt
Cardinal Hill Rehab Hospital
Lexington, KY

Dr. Ramsin Benyamin
Millenium Pain Center
Bloomington-Normal, IL

Dr. James North
Winston-Salem, NC

Drs. Didier Demesmin and Jeffrey Gehret
University Pain Management Center
 Somerset, NJ

Precision Neurosurgery
Melbourne, VIC
Australia

Dr. Hammam Akbik
UC Pain Managment Center
West Chester, OH

Dr. Andrew Parent
London, Ontario
Canada

Medtronic also has doctors available in Montreal and Vancouver, although I don't know specific names at the moment.