Saturday, December 17, 2011

Vacation and Holidays

So my Disney World trip went pretty well. We were there for 8 days and 7 nights. I did need numerous breaks and couldn't do a full 12+ hour day. It was difficult because I could remember how much easier it was for me 5 years ago before this illness came on, but trying to compare myself to that person is useless. I was very lucky and got a disabled person's pass that basically allowed me to skip the lines and also sit close to the stage for shows (I have some vision loss from Intercranial Hypertension years ago). Technically the pass (called the guest assistant card) is just supposed to give the holder a place to sit while they wait, but it ends up just being a permanent fastpass. Now I say this not because I want people to take advantage of the system (I beg that you do not), however not many people know about this tool and it is extremely helpful to those who need it. It literally allows me to enjoy Disney. My stamina is still not what it used to be and standing for hours is rough. I did notice that my headaches were pretty bad, but I didn't notice them until the end of the day. My stimulator allowed me to take this trip and I am truly thankful.
If you are planning a trip to Disney (land or world) I recommend checking out this website ( My mom even bought me a book about visiting Disney World with a disability. It helped me plan breaks and showed me good places to rest. Our hotel was 30-60 minutes away from the parks, and I get motion sick on buses, so I had to find alternative places to relax.
Since getting back I have found a pain management counselor. It was something I've been meaning to do for months, but I continually put it off. I knew I needed help dealing with the pain I still have, but I honestly didn't know where to go. I got a referral from my primary care physician and after one visit I'm pretty happy with this therapist. He seems to understand pain. I guess I am resistant to this process because it's not easy. Confronting fears and dealing with the idea that I may never actually be 100% pain free is scary. Don't get me wrong, I am doing so much better than before the surgery, but it's not perfect. I think that before the stimulator I couldn't have even gone to therapy because it was too hard. Now that I am in considerably less pain things are easier to deal with.
I no longer use my stimulator every day. I would say probably every other day or so. I have it on for 12 hours and turn it off at night. When I had the trial stimulator the feeling was soothing and helped me sleep, but more recently it annoys me when I try to doze off. I think this is because I now go to sleep on my stomach and the stimulation is more intense when my forehead is pressed into the pillow. My pain relief is still amazing. I feel like I finally get the hang of how to use the stimulator effectively. I pretty much only use one of the four programs. The others don't offer as much relief. And since I don't have the stimulator on constantly, I don't get headaches from over stimulation (which does happen).
I would like to wish everyone Happy Holidays! If you have to travel be safe!

Wednesday, November 2, 2011

Disney World

I will be leaving for Disney World this Saturday. It's a trip that my brother and I have been planning for years, but my headaches always got in the way. The fact that I am now able to go is all due to the stimulator (and a very generous sibling). I will write when I get back and share how I was able to control the headaches.

Thursday, October 13, 2011

Falling and Fears That Follow

My mom came out to visit me this weekend because I have been feeling so much better and it's been years since she's seen that. We spent hours shopping and having a good time. Our last stop for the weekend was Costco to pick up odds and ends. Wouldn't you know it? I slipped on a liquid substance (maybe jam?) and fell. Hard. At first I didn't know what happened. Then I wanted to get up and leave quickly because I was so embarrassed but luckily my mom had me stay down until we could make sure everything was fine. I was sore but that didn't matter; I was concerned about my stimulator. I know that the wires can dislodge after a jolt (usually a car accident or a big fall) and I wanted to make sure everything was in place. I'm sure the poor Costco manager was wishing it had happened to someone who didn't recently have brain surgery, but that's the way it goes. 

I went to the ER and got X-Rays as well as a CT Scan. Luckily everything was in place and I was discharged after a few hours. My hospital experience made me wish I was back in Sacramento with knowledgeable doctors because everyone at Renown looked at me like I had a second head when I told them about my stimulator. I have been considering finding a neurologist and neurosurgeon here in case I need anything, but so far I do not have much confidence in the doctors in Reno. Perhaps it's worth the two hour drive to visit UC Davis. 

I will need physical therapy because I pulled my back out. I hate physical therapy. I have had many experiences with it in the past and while it does help, I don't enjoy going (especially at this age, I'm too young!). This fall made me even more thankful that I do not have the stimulator battery pack in my back because there is no doubt I would have caused some damage. As anyone who has had this surgery knows, the fear of a revision surgery is real and always looming. Hopefully as time goes on I will think of it less and less. But for now, I am still treating my body with kid gloves. 

I have been trying to taper off the pain killers, but every time I try I seem to hurt myself. I am truly struggling with this and it brings me a lot of shame. I thought it would be easier than it has become. I'm really not on a high dose, and I don't believe I'm addicted because I'm taking less than prescribed. Yet I know that my body is dependent. What it really boils down it is I'm afraid of going off of them because I am petrified of being in pain. The funny thing is I also know that I'm in more pain because I'm on opiates and once I get off I'll be amazed at how good I feel. I'm just scared. I don't want to go off of them and have to go back on. I'm seriously looking into doing a detox program through a local rehab center. I know my insurance will cover it, I just want to make sure I'm not branded an "addict." 

I so wish there were more doctors out there that understood chronic pain and opiate use. Before I came across my correct headache diagnosis (hemicrania continua) and the ONS surgery I applied to go to a pain rehab clinic. It looked amazing: mornings were spent with a counselor that understood pain, afternoons were spent doing exercises and learning meditation. Basically, they taught you have to live a modified, but normal, life without medication. I soon found out they did not take headache patients. I was devastated, which sent me on a search for somewhere that did. To my dismay I could not find any. There were several headache specialty clinics, but nothing to help cope with chronic pain. I suppose that is part of the reason I was so gung-ho about the surgery. I knew that I didn't have many other options and I certainly didn't want to be on opiates the rest of my life. Perhaps one day doctors will stop throwing pills at people and teach them how to deal with pain, but maybe that's just wishful thinking.

I found this website very helpful when trying to deal with chronic pain. The books that they sell are amazing and I highly recommend them.
And their store:

Saturday, August 20, 2011

A Month Already?

I can't believe how long it's been since I last blogged. I have done so much! Spent a week at the beach with my amazing boyfriend, a week back at my mom's house in Sacramento, completely redoing my front porch (oh the joys of buying a foreclosed home!), daily walks with my dog and getting ready for school. All of those little things are so much easier to handle now that I don't have horrible headaches.

I use my stimulator sporadically. I will turn it on when my pain reaches a 2 or 3 and generally leave it on for a full day. I notice the stimulation is stronger when I press on my forehead, so sleeping on my stomach can be a little uncomfortable. Usually around hour 25 it really starts to annoy me, so I'll switch it off for a day or two. Then the cycle starts again.

Something I have really been struggling with is getting off of pain killers. I wasn't sure if I should broach this subject, but I think it's important. My use of opiates has been fairly consistent over the past few years. I have never had an addiction problem, yet I often do not discuss my usage because many people do not understand taking them responsibly. I always hear a story about how it's only a matter of time before I become an addict.

I strongly believe that to become addicted to opiates you can't be in pain. At least not chronic, overwhelming pain like many of us are. There are some doctors who do not believe in prescribing pain killers unless a person is terminally ill. This is beyond frustrating to those suffering with chronic pain. To be honest, those pills saved my life. There were days when I was so hopeless and in such dire pain that I was suicidal. However, there are also doctors that will hand out prescriptions like candy, and these doctors cheapen the real pain that some people are in.

What I am having issues with is physical dependence. Much different from mental addiction. I don't think I realized how much my body needs this medication. I've been trying to wean off slowly, but it's easier said than done. I just can't wait to be done with them!

Thursday, July 21, 2011

Home at Last

I drove the few hours back home a little over a week ago. To say I was nervous would be an understatement. I hadn't driven in probably two months and I wasn't ready to leave the comfort of my mom's house. I think I was overwhelmed. It feels like I'm mostly out of pain and now I should get right back to my old life- working at least 25 hours a week and going to school full time. I mean, why wouldn't I? I feel overwhelmed. So I'm trying to take things one step at a time and give myself a break.

I am enjoying being out of pain. It's been 4 years, which, at 25, might as well be a lifetime. To say that I'm completely pain free would be a lie, yet it's minimal and I can handle it. Sometimes the stimulator bugs me. I can't exactly explain why, but I just turn it off to give myself a break. I have it on for the majority of my day and I usually sleep with it on. I keep it very low, around 1-1.5. The power goes up to 10 (or so I'm told, I turned it up to 3 and it really started to hurt). I also found that keeping the pulse width low (25-40) gives me more relief than turning it higher. I have 4 different programs I can choose from (A1, A2, B1 and B2). They are all a bit different and I usually stick with the A's. The B's seem to irritate my scalp which makes it itch.

I'm trying a new scar removal patch. I bought Bio Oil and despite the label that told me it was not oily, it really was. I let it dry for an hour then put on a shirt and stained it. So I bought ScarAway silicone patches since they are supposed to work well and they were affordable ($20 for 8 weeks). I know they are not the highest rated on the market, but I couldn't afford the $50+ for the Cica Care which are supposed to be the best. I enjoy the patches since they do not get in my way at all. I put them on at night, leave it on for 12 hours and take it off. Each patch is good for one week and you get eight in a box.

I have been trying to push myself to get out of bed and do something every day. My stamina is totally shot and I get exhausted easily. I know that it's going to take a while until I'm "normal" but it's almost fun working up to that goal. Next week my boyfriend and I are taking a vacation. We'll be going to the California coast and camping. But not real camping, KOA camping with cabins and all since I'm not quite up to sleeping on the ground.

Saturday, July 9, 2011

Heading Home

I'm going to be going back to Nevada in a few days. This means I'll have to return to a normal life where I won't have most of my meals cooked for me, I'll have to do the dishes, my dog will have to be walked (I will miss just letting her out to romp on my mother's five acres), and of course, school next month. I have been very lucky that my mom has been so supportive and such a big help during my recovery. Part of me doesn't want to leave, but I'm bored. I personally consider boredom to be a good sign since it means I'm feeling well enough to be somewhere other than in my bed watching tv. My stamina is ridiculously low and I figure it will take a long time to build it up. That task is daunting and I'm not sure what my future looks like. When I was sick I thought getting out of pain was my whole battle, but I was wrong. There are emotional/psychological issues that I need to deal with now that I can.

I finally got my stimulator programmed correctly. I told my rep that I was unhappy with Mike, the rep that was at my revision surgery so she met me at my general practitioner's office. Turns out Mike did not change the programming at all after my stimulator was repaired, despite the fact that I told him before and after the surgery that it needed to be fixed. It frustrates me I was in pain for a week and a half longer than I needed to be, yet there is nothing I can do about it now.

I went to my post-op on Thursday with my neurosurgeon. He took the time to answer every question I had which I really needed. I wanted to know if I am able to get pregnant and have a fairly normal pregnancy with the stimulator (though I absolutely am not planning on children for years) and he said I should be fine. I asked him if I'm going to run into an problems with the battery pack moving if I lose weight. He said it might shift depending on how much I lose and I may need a revision at that point. I've been having some shoulder pain caused by the tight wires in my neck and he suggested physical therapy before it heals. I feel more confident about it all now and I'm ready to be done with doctors for a while.

My stimulator is still giving me great pain relief. It seems I get some soreness if it's turned up too high just because the wires are in a very sensitive area. I get frustrated with it all sometimes though. It's not that the sensation is annoying, it just gets frustrating to need it so often. I am hoping with time I will be able to use it less and less.

Thursday, June 30, 2011

Revision Complete

I know it's been a week since my surgery but I haven't felt like rehashing the experience. It was not pleasant. However, my stimulator was fixed and in the end that's all that matters. The battery pack had tipped forward which made it stop working. My surgeon made a new pouch, put the battery pack upright and stitched me back up. My Medtronics rep was out of town, so I did not know the rep who was there that day. Unfortunately he did not reprogram my stimulator after surgery, so I'm not getting any pain relief. Luckily tomorrow I have an appointment to get my stitches out and my rep is going to meet me there to fix the programming.

I'm sorry if I seem pessimistic. This has all just been so hard. I am beyond frustrated. My mom is trying to remind me that my headache will be gone soon, but it feels like forever away. At least my stomach looks way better than the last surgery, plus it doesn't hurt as much either. If all goes as planned I'll be able to go back to Nevada next week and start my life again, which is both scary and incredibly exciting.

Tuesday, June 21, 2011

Rough Pre-Op, Surgery Tomorrow

Yesterday was my pre-op appointment. I thought my last pre-op was bad, but this one was so much worse. I got there at 2 pm, had my blood drawn and then sat around for 3 hours until I saw a nurse practitioner. At one point I started crying because I was in so much pain and they were making me wait too long. One of the nurses took pity on me and let me move from the waiting room to a private room, gave me some ice and apologized profusely. The nurse practitioner finally came in, hours after my appointment, and was completely useless. I had several questions that she couldn't answer. She kept saying, "Ask Dr. Boggan when you see him the day of the surgery." Not what I needed to hear. Especially since I wanted to know where they plan on placing my battery pack, are the wires going to be lengthened so that it's not so tight in my neck, etc. She also told me that I won't get IV pain medications, even though I will be in a lot of pain. That upset me. I didn't ask for this surgery. If it was done right the first time, I won't have to go back in. I'm not an addict trying to get a fix. I'm a woman who has been in pain for over 1,300 days and I would much rather not have to hurt any more. I really don't think that's too much to ask. It makes me wonder, when did this "professional", who has worked in neurosurgery for years, lose her compassion? I've sure that my doctor, who I truly respect, will make sure I am as comfortable as possible while I'm in the hospital. I just needed some reassurance yesterday.

Tomorrow is my surgery. I like to think of it as a "do-over." I am so tired. Emotionally I am completely drained. Physically, well, I feel like a mess. I am thankful that I get to have a revision quickly and may be able to salvage a little bit of the summer. It's strange to think that tomorrow I'll be able to use my stimulator again. I'm glad the battery is going to be moved, since it's sticking out right now (which I don't think it's supposed to do), yet I'm not sure where they are going to put it next. That makes me nervous. My hope is we get it right this time. And I'm able to recover quickly.  

Sunday, June 19, 2011

An article to read on ONS complications/Questions to ask your doctor

As you can tell from my blog, nerve stimulation isn't an exact science and there can be many complications. Trying to sort through all the studies is overwhelming and frightening. It seems as if nothing is written for the patient and certainly doesn't go into detail about possible complications. Therefore,  I would recommend reading this article if you are considering Occipital Nerve Stimulation. It isn't aimed at the layperson, but it's not too difficult to understand. Another thing to keep in mind is they started the study 5 years ago and medical technology has come a long way. For example, I have 2 stress loops so that my leads have some give and shouldn't migrate (this was not a common practice in the past).

Occipital nerve stimulator systems: Review of complications and surgical techniques

I encourage everyone to take an active role in their own health care and not be afraid to discuss exactly how the surgeon will implant the Occipital Nerve Stimulator. Neurosurgeons do not have the best bedside manner, but never feel bullied into being silent. Good questions to ask are: How often do you see the need for a revision? When do these revisions usually occur? Have you found better success putting the battery pack in the chest or abdomen? How many incisions will be made? What are my restrictions while healing? How many stress loops will you put in? Do you prefer rechargeable or non-rechargeable batteries? (I have a non-rechargeable battery. While rechargeable have a longer life, about 10 years vs the 6 years mine will last, my doctor has found that many people don't take the time to charge it and kill the battery quickly). These are all things I did not know to ask my doctor and I'm learning as I go.

While it is tempting, it might be best to refrain from asking the likelihood of the stimulator taking away your pain. He/She will most likely say 50/50. This is far from comforting and not necessarily true depending on the type of headaches you have. For example, one study has found 75% of Hemicrania Continua patients receive over 60% pain relief. My Medtronics rep has installed 5 stimulators in HC sufferers and 100% of us found 80%+ help. Yet this is not something my doctor would share with me, for whatever reason.

Thursday, June 9, 2011

Revision Confirmed

Today I went in and saw my neurosurgeon to discuss my inevitable revision. It was confirmed that an electrode pulled out of the stimulator which was causing it to cut in and out. Unfortunately the electrode that pulled out is the main one that was giving me the most pain relief. To top it all off, my battery pack also moved and flipped forward, which is why it looks so swollen. Sigh. The wire on the left side of my neck has started to feel tight too. My surgeon put in several "stress loops" so I had slack to move, so he's thinking that it's tight due to the battery pack shifting.

I talked to Dr. Boggan about why this happened. He was very tactful with how he said it, but basically it's because I have a very "ample" stomach and it was harder to anchor it down. He couldn't put it under all of my fat since then my remote wouldn't be able to communicate with the stimulator. I don't think I could have felt any worse at that news. I know that I'm heavy, that's not a surprise. I have never really been skinny, but I gained a lot of weight when I got sick. As anyone with migraines can attest to, exercising while in pain does not go well. I have been so hard on myself these last few years because this is not where I want to be physically and it just kills me that this surgery wasn't successful due to my belly.

My mom said I shouldn't beat myself up over this. And she's right. I'm sure I'm not the first heavy person my surgeon has done the ONS surgery on. He didn't focus on this being my fault, at all. It's just so difficult to hear, and easy to obsess about. I wanted to be well on my way to full recovery at this point and it makes me so sad I'm not there. I look forward to getting back to Nevada feeling better than I have in years.

The plan: revision surgery in 2-3 weeks (end of June or beginning of July). My surgeon is going to take the battery pack/stimulator out and move it to another area. He's thinking more to the left towards my back, but we're going to discuss that further. Perhaps I'll talk to him about putting it in my upper chest. I know that he doesn't want it there, however under these circumstances maybe he'll relent. Truth be told, I don't want it there, especially since now I already have a scar on my stomach, but I'm at the point where it won't matter as long as it works. I am anticipating this surgery to be more painful than the last because they will have to re-tunnel the wires, make more incisions, and re-anchor everything. Bring it on!

Sunday, June 5, 2011

Even More Pictures

Here are some more pictures of my stomach incision and how it's healing at 3 weeks post surgery. (Infection is gone thanks to the steri-strips)

 The swelling has gone down quite a bit, but it still sticks out a little.

Wednesday, June 1, 2011

Whispers of Revision

My stimulator is having some serious issues. It's cutting out constantly, and only really works when I'm laying flat on my back. I was having a really bad headache this morning, so I turned it on and it made me twitchy because it was switching on and off while I was walking. It almost felt like it was shocking me because the muscles in my face move when the stimulator first comes on. I suppose I can look at it in a positive light and say my face got a nice workout today.

I called my Medtronics rep last night and told her what I'm experiencing. I warned her last week at my neurosurgery follow-up that it didn't feel right and she said it might be from the swelling. But when I talked to her yesterday she was certain that I need a revision. I knew that the likelihood of  revision with ONS surgery is close to 100%, but I just didn't expect needing it so quickly. I'm not even 3 weeks post-op! According to my rep, I have to wait at least another week before another surgery, but it will most likely be longer since my surgeon is so busy. I called his office today (twice) to figure out if I should stop using the stimulator, if I definitely need a revision, etc, but he wasn't there and I couldn't seem to get any answers.

I'm feeling really down. My pain is bad again and I was hoping I wouldn't need a pain killer refill, but now I will. It makes me cry when I think about it. I suppose that's because being off pain killers is my ultimate goal- the whole reason I did this surgery. And now I'm not where I thought I would be at this point in my recovery. I keep wondering, "If I'm having so many problems in the first month, does that mean I am destined to have nothing but issues with this thing?" I know it will all work out in the end, and I will be happy when I'm pain free again, yet I just feel so drained trying to deal with it now.

Monday, May 30, 2011

Medtronic Pain Ambassador Program

Medtronic (one of the companies who make neuro stimulators) has an interesting program called Pain Ambassadors. A volunteer will contact you and discuss their experience with the stimulator. I never contacted them since I had not heard of it until after my surgery. I believe it's a valuable opportunity if you are considering an ONS. When I get everything working right again, I think I will become a volunteer to help people make the decision. If you're interested, you can visit their website and to learn more.

Sunday, May 29, 2011


My stomach is looking much better! I am very excited about that. However, I am still very swollen, which has been causing a few issues. My stimulator has been cutting in and out a lot. I talked to my surgeon and Medtronics rep about it, and they did some tests. The leads all seem to still be in place, so they aren't 100% sure why I'm having such issues. My rep thinks that perhaps it's the extra fluid from the infection causing it to turn off. Who knows? It's been really annoying, so I've just kept the stimulator off during the day and turning it on at night since it doesn't bother me while I'm sleeping. I keep telling myself that it will go away when the swelling goes down, but I really not sure that's true. I knew that there was a high probability that I would have to have a revision, but I didn't expect to need it so soon.

Last week I was feeling well enough to go to a local lake with my dog and boyfriend. These are the things that I couldn't do when I was having horrible headaches. We were out for several hours. I was surprised that I was able to be that active so shortly after surgery. My dog decided she likes to dive off the docks, so I'm looking forward to getting her into some sort of agility class this fall.

On an even more personal note, I would like to thank all the people sending me e-mails. It has been keeping me busy, and reminding me that I am not alone in all this. I love answering questions and just connecting with people. I think I was so wrapped up in my own pain for so long that I forgot that there were others out there also suffering. I want to serve as inspiration, because, no matter how bad off you are, there is hope. It's easy to forget that.

Thursday, May 26, 2011

It was all going great and then... Infection Strikes

I have been doing really well, healing fast, feeling amazing, everything was great. I got my stitches out Monday by my general practitioner, saw my neuro-ophthalmologist yesterday, and then my neurosurgeon appointment with Dr. Boggan was today. I wasn't expecting anything special, mostly because surgeons are not the best with bedside manner and they are usually in and out before you blink. Dr. Boggan came in, looked at the incisions behind my ear, said they were healing perfectly, and then looked at my stomach. He was surprised to see that it wasn't doing as well as the others. I have been keeping it covered (mostly with gauze and paper tape but I'm allergic to adhesive so as soon as my stitches came out I stopped that) and I could not figure out why it was still so nasty looking and tender. My very sweet boyfriend said it looked fine, but I knew he was lying. The doctor confirmed that it is infected. I thought, oh well, give me some antibiotics and I'll go about my day. He said that since we do not know what type of infection I have he can't give me antibiotics, and if it doesn't clear itself up in 2 weeks...well he's going to have to take out the stimulator, let it all heal, and try this all again.

I wasn't sure how to handle that information. Luckily my mom reminded me that surgeons always think of the worst case scenario. I'm a very sensitive person and I have a hard time getting hypothetical bad news because I don't hear it as possibility, I hear it as a plan. I don't want to go through this surgery again. I want to start my life. However, if I do have to take the stimulator out so I can put it back in later, it's worth it. I haven't had a headache since it was put in and I couldn't be happier with that fact. Sigh. I thought that this would be simple, silly me. 

Now I have steri-strips over my stomach incision which are a hassle. I haven't even had them on for 12 hours and one has already come off. There is no way they will last for 2 weeks... I'm going to have to pick some more up soon. I'm really trying not to blame myself for the infection, yet it's not easy. I keep thinking, "I didn't take care of it well enough" or "I've been doing too much." Fingers crossed it gets better soon!

Tuesday, May 17, 2011

More pictures

Here are some pictures of my stomach where they put the battery pack in. Really not pretty right now, but I will continue to take pictures to show how it's healing.

My stomach is very swollen. I'm not sure how much of that is the battery and how much is just from the surgery. Time will tell...
 Please ignore the stretch marks...I gained some weight while dealing with migraines.

Monday, May 16, 2011

The Agony and The Ecstasy

So I'm now 3 days post-op and I apologize for neglecting my blog. Every time I sit down to write I lose my gusto.

My surgery took place around noon on the 13th. There really was a lot of sitting around that day. I got to the hospital around 9:30 and they weren't ready to prep me, so I had to sit in the very crowded waiting room. I was called back at 10, and I didn't see any doctors until an hour and half later, which was surprising because before my trial surgery I had 3 anesthesiologists, 2 neurosurgery med students, a Medtronics rep and, of course, my neurosurgeon fluttering in and out. 

Anyways, they did some simple prep work in the pre-op room, took me back to the operating room and then put me under general anesthesia. I have had two previous brain surgeries, so this was old hat for me, and I knew to put on a Scopolamine patch the night before so the drugs didn't make me sick. Unfortunately it just didn't seem to work this time. I woke up in recovery shaking uncontrollably and throwing up (though I had nothing in my stomach, so it was just saliva). It really was an awful experience because I didn't know what was going on and I was in pain. I should also note that I am allergic to eggs, and apparently the normal anesthesia they use is egg based, so perhaps the other stuff isn't so hard on the body.

The shaking wore off and I was able to have my mom come back into the recovery room with me. My Medtronics rep stopped by and programmed my new remote with 3 different settings so I can have some options. I also can change pulse widths and a few others. My wonderful rep allowed me to do so during my trial, so I wasn't overwhelmed with the different options. Hanging out in recovery really wasn't that exciting. They put me on a clear diet because I was nauseous hours before, but my nurse let me eat real food. I was in a whole lot of pain, therefore I decided to spend the night in the hospital so I could continue to get IV pain meds.

My surgeon decided to tunnel the battery pack down to my abdomen for two reasons: 1) No easily visible scars and 2) He said sometimes people bump their clavicle and it's safer having it lower. I really was skeptical because I have always heard the shorter the leads the less than can go wrong. But, in the end, I am glad the battery is where it is. However, this is a very, very painful place to cut because every time you move you hurt. I couldn't get out of the hospital bed without crying. A good trick I picked up was pushing a pillow into my stomach when I was trying to move, and for some reason it helped.

The roommate I had overnight was pretty awful. She kept me up all night, which was ok since I was on pain meds anyways and couldn't sleep. By about 3 am I had wished I had gone home, yet it was nice that I had nurses taking care of me. I made sure to get up and walk around since my mom swore that it would help me heal. I was released around noon and was overjoyed to be in my own bed. Ever since I have been taking it pretty easy, walking a bit, and putting ice on my stomach a few times a day. I can get out of bed without much pain and move freely. I am surprised, I really thought it would take longer to heal.

The Ecstasy: I am still headache free (!!) so the stimulator is working wonders, I was able to take a shower after over a week, I am able to play with my dog and spend time with my amazing brother. The Agony: I can't get comfortable, my stomach hurts, and (the worst part) my right thigh is always numb. I called my doctor and he said that it's normal because they had to lay me on my right side for the surgery, but it may take 8 months to clear up.

I apologize for the long post, but I wanted to make sure I got everything in.

Saturday, May 7, 2011


Here are two pictures from my surgery yesterday. My surgeon did shave a lot of hair, but less than I was expecting.

Since my headaches were solely based in forehead, my doctor had to make a small incision along my hairline to thread the wire.

Friday, May 6, 2011

Trial Surgery

It has been a long day, but I decided to take a second and post my experiences before I forget the details.

I went in for my trial surgery today. Luckily I was the first patient this morning, so I didn't have to spend the day in anxious anticipation. Around 7:30 am they wheeled me back to the operation room after about two hours of pre-op preparation. Since I have egg allergies, the anesthesiologists had to choose different medications to put me out. I have a hard time explaining exactly what they gave me. I was certainly awake for most of the surgery, and I remember it, yet it wasn't like "twilight" as many doctor's kept explaining to me. One anesthesiologist (I had three altogether, gotta love teaching hospitals) gave me a shot that was supposed to make me feel like I was drunk as I got into the O.R. I did for a short period of time, but it wore off quickly. My surgeon came in and started shaving my head. Luckily he didn't chop as much off as I was expecting. He then sterilized the area, and covered my face with a paper drop cloth. My pain is solely above my left eyebrow, so Dr. Boggan decided to forgo connecting to the occipital nerve, and instead insert the wire into my forehead. This meant that during the surgery I was on my side the whole time.

Next, the doctor started injecting a numbing agent into my forehead and surrounding area. This was pretty painful. If you have ever had botox for migraines, it does hurt more than that. The funny thing is, because of the medication, I didn't really care. A little while later I felt Dr. Boggan slip a wire into my forehead, turn it on, and ask if that was the correct location. I said no, so they repositioned it. While I do not remember, I was later told that as soon as they turned it on I sighed and said, "My pain is now gone." Since they no longer needed my input, the anesthesiologist much have given me something stronger because I fell asleep. I do remember saying several times, "Oww, that hurts." Next I remember clearly is waking up in the recovery room.

 I could not have been out of surgery long before the Medtronics representative came in to show me how to use my remote. Since I was so groggy, I requested that my mother be in the room with me because I wouldn't remember the conversation. I highly recommend that if you choose to have this surgery, you have someone else there to listen to the rep and explain it to you later. She was sweet, and gave me a lot of hope. I got the basic gist of what she said, but the details were fuzzy. Apparently, I fell asleep while she was talking.

I was in quite a bit of pain, so my neurosurgeon was hesitant to send me home, despite the fact this is supposed to be outpatient surgery. However, by noon, I was doing very well. I decided that I would rather go home and be comfortable, instead of staying in the hospital. I was discharged by 12:30 pm.

As soon as I left the hospital I turned on my stimulator. Instantly I knew that it was working for me, which was surprising. I thought that it would take a few days until the incision pain went away before I knew if it was helpful. I was wrong. I no longer have the same headache I have had for the last 4 years! Sure, there is quite a bit of pain, and I do have a headache, but it's a different one that I am used to and it's just from the wires. I am so excited and it all feels worth it for me now. I'm really looking forward to having the battery implanted next week so that I can start healing and get on with me life!

I will upload pictures in the next few days.

Wednesday, May 4, 2011

Two days until surgery...

I have had daily migraines for four years. This pain started when I was 21, shortly after I had brain surgery for Pseudotumor Cerebri (also known as Intracranial Hypertension). I always believed that they would magically go away, since they started for no particular reason. After seeing over five neurologists, taking every prescription on the market aimed at treating and preventing headaches, getting botox injections, and countless tears, I came across a rare disorder called Hemicrania Continua in January of this year. I promptly visited my current Neurologist and he kicked himself for not thinking of it sooner. I had all the symptoms: a headache that never, ever, went away on one side of my head, a runny nose, and a drooping eyelid. He prescribed an anti-inflammatory called Indomethacin (the only way to correctly diagnose HC is if it responds to to this medication), and within a week I was pain free for the first time in years. I was over the moon.

About a month into my Indomethacin treatment I started to have severe side effects including stomach issues and extreme kidney pain. My general practitioner decided it would be best to discontinue this medicine before it did any permanent damage. This was a hard decision for me. Yet, in a way, I was more comfortable with my headache because I've been living with it for years. At this time, it was the end of March and I wasn't sure what to do. I had to take several years off from college after my brain surgery, and last Fall was my first time back at school and living on my own. When I was out of pain for those few weeks I realized that I could not live a real life with headaches. And while painkillers really do help me make it through the day, I hate them. As my loved one can attest, I become a raving bitch while on them. So, I wasn't left with many options. That is when I came across Occipital Nerve Stimulation.

There is not much known about ONS. Since it has yet to be FDA approved, there are only a few clinical trials that are written to be read by doctors. I was confused and overwhelmed, and that's when I found the blog I no longer felt alone. In one night, I read all of her posts because I was so riveted. She made me laughed and cry. She gave me so much hope. Some day I'll be able to plan a vacation that lasts longer than two days and maybe even get married. Soon, I'll be able to work again. This promoted me to call Medtronics (1-800-510-6735) and find a doctor that will do the surgery. I was pleasantly surprised to find that my last neurosurgeon, Dr. Boggan at UC Davis in Sacramento, also does the ONS surgery.

Since Dr. Boggan is in high demand, I wasn't able to get an appointment with him until the middle of April. When the day to see him came, I was anxious. What if he says I'm not a good candidate? What if he says it won't work? Luckily, he put those fears to rest and said we can give it a go. Unfortunately, he wants to shave my whole head and instead of inserting the wires behind my ear, which is common, he wants to do one on the side of my face and the back of my head, so I will have visible scars. I was emotional and scared, but it has all set in and I'm ready to do anything to get rid of this pain. I am tired of crying and not being able to be a "normal" 25 year old.

Dr. Boggan told me his schedule was full for six months, but he was hoping to get me in by June. That made me happy because I could finish off my school year and spend some more time with my boyfriend and friends. Then I got a phone call a few days ago saying that they have my trial set for May 6th, and if that takes away my pain, I will have the battery inserted May 13th. I was shocked, scared, elated, and rushed. Luckily I was able to finish school early, pack my car with everything I could think I would need for 6 weeks (the approximate recovery time), and drive from Nevada to my mom's house in Sacramento. Tomorrow I have my pre-op appointment, and then surgery on Friday. My biggest fear is this won't take my pain away, then what do I do? I have my fingers crossed...