It has been 4 weeks since I had my bilateral occipital and right supraorbital nerve stimulator implanted, and all was going well with it until this past weekend. Saturday morning, I woke up at around 2am with severe neck pain, stiffness, and what felt like swelling on the back of my neck where the two leads were placed, and very limited head movement. I threw up at that point, but I honestly felt that was from something unrelated.

So during the day on Saturday I called the neurosurgeon on call, and he felt that I didn't need to be seen right away, but he would prescribe something for the pain. Later that day I took some aleve and some of the stronger pain medication, and my neck did start to feel better, but still felt swollen, painful to touch, and still had limited movement. I emailed the company rep for the stimulator, and he wanted me to come in to see my neurosurgeon on Monday morning. By Sunday night I had a fever of 100.3 and during that night, my back really started to hurt along the track where the leads run from my head to my abdomen.

So I went in to see my neurosurgeon, his nurse, and the company rep on Monday morning, and they were very helpful. My temperature was only 99.2 at their office, and the neurosurgeon thought that things looked pretty good for the most part, but he started me on a strong antibiotic for 10 days in case it is an infection. My abdomen is still fairly swollen, and they were concerned about that, as it could be the source of the problem, but we're going to watch it for now and try the antibiotics. The company rep feels that if it doesn't get better, then maybe we should get an xray to make sure nothing has moved.

The other thing was that shortly after the surgery, we had noticed this bump on my forehead where that lead was sticking up.  At my 1st post-op visit the neurosurgeon told me to wear a headband (like tennis players wear) for 4-6 hours a day for a week to try to flatten the lead out. It has actually worked - the headband was giving me headaches, so I just wear it at night. He told me at my appointment that he was at a conference for functional neurosurgery, and discussed the problem with like 3 other doctors - all of which thought he would have to replace the lead. So far, we're defying the odds!  He wants me to continue on with the headband.

The stimulator is working pretty well for both my clusters and migraine. I'm not having as many CH's right now, and I have needed drastically less triptans and O2. My migraine baseline has been pretty tolerable most of the time. The only thing is that the area of stimulation is not what it was with the trial, so I'm going to continue working with the company rep to try to optimize the stimulation.  This is all still new (to have the 3 lead setup and to program it this way), so we're trying to optimize it!

That's the update for now! Hoping it just gets better from here!

Hugz,
Carrie

Thanks, big bro!

I created 2 databases in Mac Numbers (similar to excel) to keep track of how the stimulator is helping my clusters and also constant migraine.  My neurosurgeon wants to collect data so that he can show the 3 lead approach is helpful, but only a few of us have had it done this way up to now.  I appreciate his dedication to not only doing the surgery, but a genuine desire to look at the bigger picture of how this could help those who suffer from severe, intractable head pain - whether it be CH, migraines, or both.

So it may not be the easiest road and is definitely the road less traveled, but it's working out so far (despite the bumps) and it is worth it to me to add to the bigger picture of finding out whether or not this will truly help those with similar conditions to mine!

Hugz,
Carrie

Mike, if you want a pretty close to full account, check out my blog which I just reopened to the public,  but removed most of my old posts from.  (Long story...)

There is so much more I need to say about the stimulator, but here is the link to my blog - it's the first post on the page, for now.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

As I said above, I'm trying to keep really accurate records that I can turn into charts and graphs representing effectiveness of the stimulator.  So far, I'm very happy with it!

Hugz,
Carrie

Whoa... Carrie. Having an episode like that during the middle of the night would have scared the living shit out of me. I'm proud of you for keeping your wits about you and waiting to go in for an exam.

How long is the battery life in this unit?

I hope you feel well soon and all these kinks get worked out... you're very brave to have gone through this surgery... You're in my thoughts and prayers so often.


with warm regards,
Tony

Carrie... regarding the rant, I don't see why you need to feel guilty for wanting relevant questions answered concerning YOUR HEALTH! Don't let the neurosurgeon intimidate you. I don't see where you were stepping on any toes, after all, it is your body.

I never heard of a battery that gets stronger as it ages... that's a great invention... I'd be tempted to tape the charge attachment into place while I slept.

As far as my pacer battery goes I guess it depends on how much my heart demands from it... right now the top chamber is being paced 18 to 25% of the time and the bottom chamber around 87% of the time.

They told me that at that rate the battery should last 4 1/2 to  5 years, and that "I'd know when it was time for a new battery."

I've not been having difficulty with shortness of breath and I've only had one incident directly following implant of almost fainting. Generally I feel a bit washed out but I attribute the meds to that... (Either wishful thinking or denial)

Another very positive and hopefully significant twist has transpired... I've only had a total of FIVE CH's since the pacer was implanted... I'm not sure what's going on there... maybe the pacer... maybe the Norvasc... maybe just a bizarre dip in my chronic cycle... at any rate... I am keeping my fingers crossed, yet waiting for the other shoe to drop....
Oh... one other thing... it's a real pain in the ass to follow doctors orders and not do anything.... this sucks...

with warm regards,
Tony

Tony and Sanna,

Just a quick reply because I have to get ready to go catch a train into the city, but thanks for the support about the rant...!  Last night, I couldn't go to sleep until I emailed both the company rep and my neurosurgeon.  First, I feel badly for putting my own "hurt" over this onto the company rep, because I know he was just genuinely trying to help - but I did ask him not to forward my emails on in the future, but rather to let me know that he cannot answer my questions so that I can proceed along the correct route to contacting the office.

Then, this morning my neurosurgeon wrote back saying that he doesn't see me in bad standing at all over this - just clarified a bit more - and in general it was a very nice email.

So, it's still making me a little emotional (stupid, huh?), but now I feel a little better at least!

Tony - I Want to comment on the pacer stuff, but do have to run - but quickly, I am glad it is helping!

Hugz to both of you,
Carrie

Thanks, George!

You guys make me smile...and to feel much better when things run amok!    The neurosurgeon's nurse called this morning - I didn't answer the phone because I usually never answer my phone if I don't know who it is.

That aside, she called because she wanted to answer the questions I have.  I'm not calling back because in reality, those questions were never meant for her or the doc - they were just random speculative questions that I had and ended up "speaking aloud" in an email to someone who has always engaged in discussion about the stimulator with me.  They aren't really questions that I need to know the answer to right now, such as, "What do I do if...." or "This happened, so what do I do now?" kinda thing - they were more along the lines of theory and possibility.  I wouldn't ordinarily trouble to call the doctor's office every time I have a question or theory about an illness or surgery I have had.  (Wouldn't the neuros love me then???  "She's calling AGAIN!?")

But that aside - over last weekend, I really did send the email to the company rep because I hadn't gotten an adequate response from the resident on call for what I deemed to be a significant problem.  When that occurred, I did go to whatever route I felt would get me the answer to something I felt was important and urgent.  (If it had been important but not urgent, then I would have waited until Monday and called the office myself!)

So, in response to that, my neurosurgeon has said (in the 2nd email he sent me) that if his resident does not adequately answer a concern that I have, then have the answering service contact him directly, and they will do that.  OK - so that's an answer I can appreciate.  I didn't know that over the weekend, or I would have done that, instead of emailing the company rep.  At the time, I felt like I had explored all options with the office by actually speaking with the resident, so now I was left with figuring out how else to handle it.  Now I know better.

Bah...anyway.  It's just a little thing - don't know why it got me so worked up.

As for the surgery, I really and truly hope that I continue to see the results I have gotten thus far, and even further improvement from here!  I am keeping a good record of what is happening so that I can follow trends and such.  To say that I am having fewer CH's now, which are able to be aborted by increasing the stimulator the majority of the time is one thing.  But to see that occur over an extended period of time, in all seasons and conditions, is entirely another!  I am happy with what I have seen so far, but not enough time has gone by yet - so I'll be carefully tracking all of that and will definitely share what I find with everyone here as well as what I am doing to share it with my physicians (both neuro and neurosurgery).

I realize that surgery is a last ditch effort.  And even that many people say that to do surgery without having tried the alternatives is insane.  Perhaps...  I cannot try the alternatives for a couple of different reasons - 1 being legal and for my career, and the other having to do with personal medical issues that I'm not sure wouldn't run some unknown risk.  But I still agree that surgery is what you turn to when you are chronic (with CH or with types of migraine/other headaches that cause continuous, daily or near daily severe pain) and have failed all of the conventional treatments (on and off label) and so on.  It is not something to be jumped into lightly, by any means.

That being said, this surgery is a LOT different than other surgeries available for CH.  The neurosurgeon I see now once told me (when I went for initial consult over 3 years ago) to never let anyone cut anything or do anything to my face that might result in permanent damage with only little chance of success at best.  I appreciated that he felt that way.  I had never considered those surgeries for CH an option for me because they just didn't give the results I would have liked to have seen occur.

THIS surgery, on the other hand, is different.  Nothing gets cut through or destroyed.  (Well, yes,  the tissue is cut for the purposes of the surgery, but I mean no major nerves are severed, and so on!)  The entire device can be removed, even.  It does not alter physical appearance in any major way.  Many of the other surgeries have the problem that you can only do them to one side, and then if the CH switches to the other side, you're stuck.  For this surgery, they can place bilateral occipital electrodes and my surgeon then additionally will place a supraorbital electrode on the side of the pain if he feels that will help/you agree to it.  I have had CH's around my left eye twice since I got the surgery, but they weren't as severe as usual, so it wasn't as big a problem that the stim didn't cover that area - I'm not sure that stimulating those occipital nerves isn't what reduced the pain for the left sided hit, even without a left supraorbital stim.

So anyway - even though it doesn't cause permanent damage like some other surgeries, there are always risks.  This surgery is much less risky compared to DBS.  The biggest risk of this surgery is infection post-op.  Supposedly DBS is more effective, but that whole risk of death thing makes it a little more of an obstacle to consider!  For some of us, risking death to beat the pain SEEMS worth it when the beast has taken everything away from you.  Personally, I wanted to try the less-risky route first to see how that went!

I'm really really hoping that this does pan out to be an option for those who suffer from chronic, medication-resistant intractable CH as well as for those with severe forms of chronic daily headache (New Daily Persistent Headache, in my case).  It would be great to have an option to turn to when nothing else works.  As I said in my one email back to the neurosurgeon, this is the first time I've felt hope that my life could return to some semblance of normal in over 7 years, and that's a really big deal.

Sorry to ramble on!

Hugz,
Carrie

Charlie,

Thanks!  Ordinarily I would agree with you about reps, but this rep is very different - as are others from his company that I have met thus far.  It's not just the fact that he gets paid for selling a stimulator - it is so much more than that.  He truly and genuinely cares about me and my pain, and that is clear - it's not just an act.  Right from the start with the trial stim, he made himself available for anything I needed regarding the stim - he promptly answered any questions I had by email or his cell phone, and he even asked the doctor general stim device questions for me (when I wouldn't have had the ability to get through the red tape to speak to him personally).  He was then present the day of my permanent stim surgery and an active participant with programming the device.  Then this past weekend, he was the one who got me into see the doctor so quickly, which was very helpful.

The snag was that he was so helpful and open, that I ended up taking it for granted and asked him things that should have been directed to my doc or his nurse.  The problem I had with it was that, instead of telling me to contact the doc for those questions, he forwarded my email (without telling me or cc'ing me) to the doc and nurse directly, which resulted in the response I got yesterday from the doc himself, which made me feel horrible.  Because of the type of person he is, there is not a doubt in my mind that his intentions were again to get me the information I needed as quickly as possible.  It just had an unfortunate result, although it has now been resolved.  Perhaps it was good - that I be reminded to keep separate issues with the device and medical issues.  After all, it is in my own best interest to ask the right questions of the right people.

I would very highly recommend this rep and his company for anyone who is considering stimulation for headache or other problems.  In fact, I'm not sure the whole thing would have gone as well as it did if it had not been for him going the extra mile.  I certainly wouldn't have felt as comfortable.

Anyway - that's that!

Hugz,
Carrie

Chris,

Thanks for the response and the support.  The rep really hasn't been filled in with much (or anything?) about my medical history, although he does have knowledge of my headaches and pain that led to my needing the stimulator.  He knows the areas of my pain, because that is important in programming the stim, as well.  He was in the operating room for both my trial surgery and my permanent implant surgery, as a member of the team.  I'm not sure exactly how much of a role he plays during the procedures, but I thought on a sample video I saw, the rep was doing some of the stim testing during the surgery itself.  At my visits since the surgery to the doc, the reps from the company have been present for the appointment because they are an important part of the team for this.  So, they're a bit more involved than the average rep selling a product!  However, they still don't know medical history or anything about me that doesn't relate directly to the stim.  Basically, though, I should ask him anything that refers to the device use, programming, problems, etc - but anything medical relating to the surgery, recovery, medical issues should go to the doc.  I'm just going to be much more cognizant of it now!

Hugz,
Carrie