Adventures in Occipital Nerve Stimulation

Tips for insurance appeals

2012-01-19T16:20:00.002-07:00

I want to share some tips for insurance appeals. I'm not sure if they all help but I'm sure they can't hurt.

First of all, I don't know if this is true, but it seemed true for me. I was told that an appeal coming from a patient is often more successful than a doctor appeal. Your doctor should be able to appeal 3 times, and if all of those are denied, it becomes the patient's turn to appeal. What I did with mine was just overwhelm them with info. I wrote like a 6 page letter giving them a history of my headaches for the last 15 years, telling them all the things I tried,how it had affected my life, and why the stimulator was the last option. I wrote it as an essay so maybe it would make them think of me as a person instead of a number.

I also included references to current research articles. I suggest using Google Scholar to look for professional articles. I have a list of them that I'd be happy to share but I'm sure there are some more up-to-date articles available as well.

I also did a simple cost-benefit workup. I'm not much with numbers but I basically added up my costs for the past year, and estimated how much of that could be cut out if the stimulator works (75% of prescriptions, ER visits, urgent care visits, etc.) and compared it to the stimulator to show that them paying for the surgery would be to their financial benefit within as short as a year.

And lastly, I'm also it's told the diagnosis and procedure codes are important. For example, if your diagnosis is coded as "migraine" it won't be as successful as if it's coded as something more specific like "occipital neuralgia." I already posted the codes that were successful for me on here somewhere but if you can't find them, I would be happy to post them again.

Those are my tips. I hope they help. If anyone has anything to add, please do!

Also, as previously posted, we've got a great group going regarding occipital nerve stimulation on Facebook so please join us! http://www.facebook.com/groups/232392623486874/

Facebook

2011-10-24T19:58:00.000-06:00

Yeah, I'm a nerd, I'm on Facebook a lot. As I was browsing around, I realized there are several groups for migraines and nerve stimulators in general, but none specifically dedicated to occipital nerve stimulation. I've found these groups to be great sources of information and a great way for people to communicate. Blogs are good too but they are obviously rather one-sided. So please consider joining the group. Sometimes the discussions are a little slow to get going but feel free to invite friends or anyone you know who may be interested.

Here is the link to the group:

http://www.facebook.com/groups/232392623486874/

Hope to see you there!

Two New Blogs

2011-07-26T22:10:00.000-06:00

I have two new blogs to share with you related to occipital nerve stimulators.

The first is from Tara who has been diagnosed with hemicrania continua and is looking into getting a stimulator to help manage her pain. You can find her blog at: http://hemicranialady.blogspot.com

The second is from "Ms.J" who has been diagnosed with occipital neuralgia and although she's been suffering for years, she is just starting her journey into the world of ONS. You can find her blog at: http://on-neurostim.blogspot.com

I'm still way behind on getting my list of doctors updated, although since I've heard it has actually helped people find a doctor, I know it's an important thing to do. I also need to update my links and labels. I've been pretty lax about keeping up with this blog lately but updating it is at the top of my list, I swear!

If anyone has a blog that relates to occipital nerve stimulation that you want to have linked to on this site, let me know. As always, my email is always open.

New ONS Blog

2011-05-06T22:06:00.001-06:00

I don't often have much to post anymore since my stimulator is in and working well. It's hard enough to find the info that people want on this blog so I've vowed not to bog it down with a bunch of useful posts just to keep it active. Consequently, I now go months without posting. But even if I'm quiet, I'm still here and check my email daily so you can get in touch with me.

A fellow headache sufferer and blog reader has decided to blog about her experience getting a stimulator. I want to share it so that people can hear a more current and different story than mine. Because resources regarding occipital nerve stimulators seem to be so hard to come across, I'm really excited that "nutmeg04" has decided to document her experience.

Her blog can be found at:
http://stimulationsurgery.blogspot.com/

She just got her trial stimulator put in TODAY so show her some support and have a look!

List of ONS Doctors--Updated

2011-01-23T23:47:00.000-07:00

I have just updated the list of doctors that are known to use occipital nerve stimulators for headache treatment from names readers have submitted to me. If you have any to add, please e-mail me. And thank you everyone for helping me compile this list. I've been told by several people that it has been a great resource for them.

This list can always be found on the righthand side of the blog for easy access (you may have to scroll down a bit to see it). Also, as one reader suggested, you can try contacting your local university pain management center. Most of them implant nerve stimulators for many indications, possibly including headaches. But in the meantime, here is the current list:

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

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

Dr. Robert Narotzky
Central Wyoming Neurosurgery
Casper, WY

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 Jeffery Gehret
University Pain Management Center

Somerset, NJ

Dr. Hammam Akbik
UC Pain Management Center

West Chester, OH

Precision Neurosurgery
Melbourne, VIC--Australia

Dr. Andrew Parent
London, Ontario--Canada

According to Medtronic, other doctors also available in Montreal and Vancouver

Residual Effects

2010-12-29T11:05:00.001-07:00

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

2010-10-28T11:55:00.000-06:00

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!

2010-08-19T21:47:00.000-06:00

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

2010-05-28T16:00:00.002-06:00

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!

2010-04-27T12:45:00.000-06:00

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

2010-04-12T22:21:00.003-06:00

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:

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.
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.
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).
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

2010-03-26T10:38:00.001-06:00

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

2010-03-22T18:52:00.001-06:00

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

2010-03-16T03:51:00.000-06:00

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

2010-02-18T15:56:00.000-07:00

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

2010-02-03T22:11:00.000-07:00

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

2010-01-11T09:04:00.004-07:00

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

2010-01-06T11:36:00.012-07:00

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.

Happy New Year...and New Decade!

2009-12-31T12:32:00.002-07:00

When I think back to last year at this time, the difference is amazing. I was hopeless this time last year...not working, fighting my headaches, spending most days in bed and in pain, and seeing no excitement in another year of the same. I was depressed, negative, and tired. But this year is different. I'm actually excited for the new year. I'm excited to be able to go on trips, to make commitments, to make plans, to return to some of the activities I love that have been put on hold for several years, to be able to look ahead instead of taking life one day at a time. I do not usually subscribe to the idea that a new year is a fresh beginning but this year I have changed my outlook a bit, and I really do contribute that all to the success of my nerve stimulator.

This is also the end of a decade that has been pretty outstanding for me. I graduated college, got my first professional job, bought my first house (and my second), bought my first horse (and my second), got married (only once!), did some exciting travelling including my first trip overseas, and won a war on headaches that I've been fighting for more than a decade. It's funny how things look when you view a bigger picture.

So here's to the new year and the new decade. May they bring more happiness, more fun, more accomplishments, and no more headaches, not only to myself, but to everyone!

ONS Doctor List--I Need Your Help

2009-12-27T17:53:00.003-07:00

Happy holidays! I hope everyone had a wonderful Christmas and is looking forward to a brand new year. I know I am! 2009 was a little rough (at least the first half) but I am so hopeful for the future so I think this New Year's will call for quite a celebration on my part.

In the spirit of giving, I want to be able to give readers a list of doctors that they can go to if they are interested in a nerve stimulator. I'm interested in any doctors/surgeons that use occipital or peripheral nerve stimulators as a treatment for headaches, migraines, occipital neuralgia, etc. .. basically any diagnosis associated with head pain. I get a lot of requests for this information but haven't had much luck putting together more than a handful of names. It would be an invaluable resource for blog readers. So if you would, please send me your doctor's name and/or the name of the medical facility they are associated with, as well as the city they are located in. You can list it in the "comments" section if you are comfortable with that, or email me at onstim@gmail.com.

Thanks for your help! The information you give me may serve to help someone else control their pain and that is one of the greatest gifts you can give, in my opinion.

I'm here, I promise

2009-12-15T14:17:00.007-07:00

I haven't written a lot lately as I don't feel there is much to say since I'm now fully healed and feeling good, but I wanted to remind you to feel free to contact me with any questions, or if you need someone to commiserate with! I wrote this blog as an attempt to help people learn and make decisions about neurostimulation and I am willing to do that any way I can so please do not hesitat to contact me. I still do check this blog and its associated comments and emails. You can email me anytime at:

onstim@gmail.com

I'll leave you with a photo of one of my dogs in his Halloween costume (he's a turtle). Random, I know, but I couldn't seem to find an appropriate picture for such a short and subject-less post so this is what you get!

My First Error Message

2009-12-03T10:39:00.004-07:00

I know I've been lax about writing lately but it hasn't been because I've forgotten this blog...it's more that I don't feel I have much to say! Things are good...I'm healed up from the revision surgery, things feel great, my pain is very much under control, and life is good. Repeating that over and over doesn't make for a very exciting blog!

I did have one interesting incident this week that I suppose is worth writing about--I got my first error message from my stimulator. I charged it before bed on Monday night and everything was fine. I didn't have it turned up very high, so honestly I couldn't really tell if it was on or off...which is a good thing, in my opinion. It's nice to not be constantly aware of the stimulation. Anyway, on Tuesday night I had a bit of pain and went to turn the stimulator up, but the screen on my remote popped up with a picture of a telephone and a doctor, with the letters "POR" beneath it. It was obvious that it meant to call my doctor but of course it was 10:00 at night so that wasn't a possibility. I busted out the manual (which was still sealed in the plastic...I haven't ever used it) and found that this particular error message means "Power on Reset." I know...not very descriptive. The manual said that this error message means there has been some sort of interference, the stimulator has been reset, and that stimulation was not available. I, of course, thought that meant that all my programming had been deleted, and at the least I'd have to go meet up with my Medtronic rep to get things straightened out. But I don't tend to give up quite that easily. I took the batteries out of the remote for a few minutes, put them back in, poked a bunch of buttons, and wouldn't you know that error message went away and it magically started working again! I spoke to my Medtronic rep the next day and he said that particular error message isn't usually a big deal and can be solved exactly like I solved it. He said that I probably went through some store theft system that caused the interference, although for the life of me I can't figure out where that would be because the only places I went that day besides work were the post office and the bank, neither of which have magnetic theft systems. Who knows...maybe I just stood too close to the microwave at dinnertime! (No really, I've been told that's an actual possibility.)

So that's it. That's the extent of my drama, which is really a good thing. It's so nice to not be constantly dealing with doctors, pain, drugs, side effects, surgery, etc. It's nice for things to be quiet and medically boring. I will not complain about that!

GASP Swine Flu!

2009-10-23T15:19:00.003-06:00

As I last reported, my recovery from the revision surgery was going smoothly. I spent about 3 days in bed, I was completely exhausted, but came around pretty quickly after that, although I really didn't leave my parents' house all week. I scheduled my plane trip home for Sunday, October 18, and was planning to spend the day with my mom and sister on Saturday. Lo and behold on Saturday morning I woke up with a really dry, scratchy throat, and my lungs felt dry, for lack of a better description. I couldn't quite figure it out but within a few hours the fever hit and I was in bed, miserable. Turns out your truly had contracted the much dreaded swine flu.

Honestly, swine flu doesn't scare me. More people die every year of the regular flu than the swine flu so I'm really not sure what the craziness surrounding it has been about. I just loaded up with Tylenol, Mucinex, and 7-Up and hunkered down. The flu is nasty, I won't lie. I don't remember ever feeling that sick. My temperature got up to 104 degrees at one point. But...such are the symptoms of the flu.

I of course had to stay in Chicago, and call my boss telling him I'd probably be gone another week (thank god for my flexible job and understanding boss). But what really irked me is I couldn't figure out WHERE I'd picked up the flu. The incubation time is 3-5 days. My symptoms started Saturday. I had gone out with my sister on Friday, but there's no way that was the origin. The ONLY other place I'd been all week besides my parents' house was the hospital on Monday, when I had a post-surgical visit with my doctor. I was in the hospital for all for 20 minutes but I guess that was enough. I must have been worn down enough from surgery that I was susceptible.

I know swine flu really has nothing to do with migraines or occipital nerve stimulation, but I do have a point for making this post, so bear with me here. My point is to remind you how much surgery takes out of you physically, that it makes you more susceptible to infections and disease, so remember to take extra precautions to stay healthy while you are recovering, even though it seems hard and might even sound pointless.

I'm healing well from the revision surgery. I'm flying home on Sunday (knock on wood), and I should get my staples out on Monday. My battery incision looks great and I already feel relief from having a looser wire in my neck. Swine flu and all, I still say the revision surgery was worth it. I'll take some pictures when I get home on Sunday...I don't have my digital camera here with me in Chicago and that kind of newfangled technology is beyond my parents. Shh, don't tell them I said that!

Revision Surgery

2009-10-14T10:19:00.004-06:00

I traveled to Chicago last Thursday as planned, for a minor wire revision scheduled on Saturday. Naively, I scheduled my plane ticket back home for Monday evening.

I had an appointment with my surgeon Friday morning. The good news was that what I thought might be wires protruding from my head are actually just sutures that haven't yet dissolved and my skin is rejecting. So it's pushing them out and I shouldn't worry about them. That's a relief, let me tell ya. Then we talked about my wire revision. At first the doctor wasn't convinced I needed it, said the tightness was just from healing, but I made him really look at and feel the wires and he saw what I was talking about. He said they could take the wire on the right side out and bury it deeper, but that would include re-opening my battery incision, re-tunneling the wire, and opening my head again. I thought about it but I decided that if I'm gonna have this thing for the rest of my life, I want it to be correct and comfortable. While we were talking, we also decided to remove one of the wires on the right...the one that runs across my forehead, because I really don't use it. That means no more bump on my forehead from the end of the wire! Call me vain but that little bump bugged me 100x more than all the other scars, and even the big old battery in my chest. I don't know why. Maybe because it was impossible to cover.

Anyway, surgery was Saturday morning at the hospital. The weird thing is I wasn't nervous, like not at all. I guess surgery has become old hat at this point! That's kind of sad. But everything went smoothly. I was in surgery for two hours, way longer than I anticipated, and was put fully under...breathing tube, the whole deal. Just like last time, I didn't feel like the pain killers prescribed to me after the surgery were sufficient so they had to track my doctor down to ask for more and I didn't leave the hospital until about 8 p.m. I forgot how exhausting surgery is. I didn't really eat or get out of bed for any significant amount of time until Tuesday. I haven't scheduled my flight home yet, but at this rate I might as well stay through the weekend.

Actually, the worst part of the whole thing was that they turned my stimulator off during surgery and never turned it back on. Vicodin and all those narcotic painkillers tend to give me a headache in the first place, but without the stimulator it was even worse. Sunday and Monday mornings I woke up with a raging headache. I got it under control but it was a pain in the butt because my battery, which the remote control has to touch in order to work (I know, not very remote huh?) was buried under a bunch of bandaging so I had to rip through all that and eventually replace it.

I'm back on restricted activity for 8 weeks, which is really lame because I was done healing. I felt really good before this surgery. But I keep telling myself it'll be worth it. I can already tell the wire feels better. It's not perfect, it's still a little tight over my clavicle when I turn my head but I'm sure in another month I probably won't even feel that.

From all the people that I've talked to that have stimulators (any kind...occipital, spinal, etc.), it seems like revision surgery is fairly common. I think it's hard to get things in just the right place when it comes to something as ambiguous as a neurological surgery. But if it makes you feel any better, revision surgery is definitely not as harrowing as the original stimulator surgery.

P.S. My doctor mentioned he's read my blog...imagine that! So if you're reading, Hi Dr. E! And thank you!

Back to Chicago

2009-10-02T10:48:00.004-06:00

I've been complaining that the wire in right side of my neck is too tight from the beginning, and I had planned to have it lengthened sometime this fall, probably in November, but it turns out I'm getting it done next Saturday, October 10. About 2 weeks ago I was feeling around on my head, now that the swelling is totally gone, and found that there is a bit of wire sticking out of my head where the connector is on the right, just above my ear. I'm not 100% sure it's wire but I'm not sure what else it would be. I asked my husband to look at it, he even got out a magnifying glass, and said he couldn't tell, it's too small. So I can just feel it, not see it. It doesn't hurt, but if you run your hand over it, it feels different from hair...stiffer, thicker. Kind of like when you have a splinter in your hand, and you can't see it but you can feel it...that's what it's like. I also actually have the same thing on the left side of my head, but not on the connector. That one is just randomly by the crown of my head, but it's right where a wire is so that's why I'm pretty sure they are bits of wire sticking out.

Anyway, I called the doctor and was told to get in there ASAP because if there is wire sticking out, then that means there is an opening in your skin, which makes you much more susceptible to infection. And if this thing gets infected, the whole stimulator has to come out and I have to wait a minimum of 3 months to have another put in. So I figured making the trip to Chicago was worth it!

I'm flying out Thursday evening after work. I have an appointment at 9am to have this all looked at, then they've scheduled me for surgery Saturday morning. It should be pretty minor, I'm really not worried. (It's kind of sad when surgery becomes "no big deal.") Then I hope to fly home Monday. Unless there are complications, or they have to do something drastic to fix the wires in my head, I think that should work out just fine.

On the bright side, I get to see my family, my best friend, and probably eat some sushi!