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.
https://www.medtroniceducation.com/kma/www/pain/ambassador/ambassador7n.jsp

Healing

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.

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!

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.

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.

Pictures

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.

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.

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 http://onstim.blogspot.com/. 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...