The time has finally come!!  I am scheduled to undergo a new implantation of the right supraorbital and bilateral occipital nerve stimulator implant on January 6th, 2009.  I am more excited than ever, but also more nervous than ever, too - seeing what happened the last time around!  The proof is in the pudding - for the neurosurgery office where I attend, they have never seen a 2nd implant get infected when having to replace for an infected 1st implant.  I do NOT want to skew that data!

We are moving forward, this time with implantation of the ANS Eon Mini (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ) IPG, whereas last time I had the Eon.  This new, smaller battery, has its advantages, and was actually the battery I was originally waiting for before my last surgery.  This time, I am having the battery implanted in my chest as opposed to the abdomen.  There are a variety of pretty well thought-out reasons for this, including the hope of reducing the risk of infection by reducing the area of the surgery, closer proximity of IPG to the leads, and cosmetic reasons.  It will mean an additional scar where I had none before, but I think it's worth it.

Some things are being done differently this time than last time with the hope of reducing the risk of infection.  I certainly hope these things will prevent infection for me this time around!  While to me, the stakes seem higher this time, I also feel we are better prepared and more knowledgeable, having been through the last round.

I got the "okay" from my boss yesterday to take another leave for the surgery on January 6th, which I am so very grateful for.  If not for her flexibility and willingness to work with me on this, the entire thing would not be possible.  Having her say yes to this date makes it finally a reality for me.  I was holding my breath since choosing the surgery date, really not knowing if it would come through or not, and I finally had the guts to ask her yesterday.  I was on cloud 9 with her response!

Everything else in my world continues to be quite busy.  Work has actually been a flurry of activity since I've been back, in some exciting ways!  Jason and my new apartment is slowly getting settled in - in fact in a few minutes here I am going to set to work again on the 2nd bedroom to try to get it straightened out so that we can get the Futon down here at last!  My grandfather is doing well recovering from his open heart surgery in September.  He's now out of rehab and the final restrictions have been let up - he is allowed to drive again and is attending outpatient cardiac rehab a few times a week.  My grandmother is not doing as well, and we are trying to sort some of that out for her.  They aren't at all happy to be up here with us now, but we try to remind them that they wouldn't have had family available to help them had they stayed in Florida, and I think that has made a big difference!

Sorry I've been away so much.  I continue to read the boards from time to time.  I missed out in getting my chance to throw my political two cents in on the election, but everyone knows I almost always agree with Charlie, anyway!  :-D

Hugs to you all,
Carrie

Thanks Jonny!!

I appreciate it!!  Nobody understands the journey I have been on more than my friends here!!

I'll PM you my address, but in no ways feel obligated.  Just knowing that I have the backing of my friends here is all the support I need in the world.  It has been a very trying time, but it really helps to know that there are others who understand the pain and frustration.

Hugz,
Carrie

Laurie,

Thank you!  I posted a number of times about the nerve stimulator surgery over the last near-year, but I haven't written about it in awhile.  I first went for a consult in Dec 2004 (or Jan 2005), and at the time, the neurosurgeon didn't feel the procedure would help me.  Things changed, and in late Summer 2007, my neurologist and 2 visiting neurologists felt that I would, indeed, be a good candidate for the procedure.  I went for a consult with the same neurosurgeon in December of last year, and he felt that enough things had changed to make this a promising option.  He was always very straightforward with me about the reality of the procedure.

In January 2008, I had a trial nerve stimulator implanted, and based on the success of that, we decided to move forward with the permanent implant.  I was initially waiting for a new, smaller battery to come out on the market, but then when the release of the battery was delayed, I decided to go ahead and get the current battery on the market implanted instead.  I had the nerve stimulator implanted in May of 2008.

By June, I started showing the first signs of infection, with a fever, stiff neck, and some nausea/vomiting.  I was placed on antibiotics, and all seemed pretty well.  There was a small area in one of the 5 incisions (the incision on the back of my neck) that was just not healing.  It seemed to get better, and I went back to work in early July.  By the end of the first week back, my neck opened up and began draining quite a bit.  The neurosurgeon told me it was infected, and started be on another course of the antibiotic.  Again, all seemed to heal, and we kept going.  At the end of July/beginning of August, I went on vacation with my family.  By mid-week, my neck once again puffed up at the cervical incision, and by the end of the week, it opened into an abscess that was draining quite heavily.  I was placed back on antibiotics again and went out of work August 6th.

Unfortunately, the infection progressed despite the treatments.  Eventually another area about 4cm to the left of the incision (where there was no previous incision) opened up and began draining, and the implant was trying to force its way out of my neck.  We decided to do surgery to remove the stimulator and clean out the infection.  3 days before that surgery, I began having fevers again and felt pretty horrible.

On 9/9/08, I had the nerve stimulator removed, and the cultures from the device grew back MSSA (Methicillin Susceptible Staph Aureas) from both the wires in the neck, all the way to the battery in the abdomen.  On 9/11/08, I had a PICC line placed and did 4 weeks of IV Vancomycin to treat the infection.

It took a long time, but the cervical incision is now finally healed!  So the time has come for us to plan another surgery to implant a new stimulator - this time with the new, smaller battery that we were waiting for the first time.  We recently scheduled the surgery for January 6th, and I found out yesterday that my boss was okay with my going out on a leave then.

So it's very exciting!!  I am more nervous about this surgery because the stakes are higher, but I also feel that we've learned a lot based on what happened the last time around!

Sorry to all who didn't want to read a review of all that happened, but that's my story in a nutshell!  The most important thing is that this is the first treatment in nearly 8 years of chronic migraine and about 5 years of chronic CH that I've found something that helps!  It was devastating to lose it to the infection, but I'm thrilled to be able to get it back!

Take care,
Carrie

You will be in our thoughts and prayers as always, but we will add a little extra hoping there will be NO INFECTION THIS TIME!

Nice to hear from you Carrie.

 B&A

Carrie,

You know you have my prayers. Glad to have the date set!  Hope things work better this time, but at least you all learned from the last experience, so it should.

Jerry

Thanks you guys!!  Your responses really mean a lot to me.   I can't thank you all enough.  Nobody understands what it is like to live with all this pain other than the folks here.  I go through my day to day life getting by, and I hear all the time "Well you look fine enough" but most people do not see the agony that is CH and chronic headache pain.  I'm lucky that triptans (Frova and Amerge, for me) mainly keep the beast away while I'm at work, and I work 4 days a week - but that plus all the other medications I'm on are just not a long term answer....not at any age really, but definitely not at age 27, with years and years ahead of me to possibly be fighting the beast.  The last time around, I had tremendous success with the stimulator - got to the point where I was even able to go 2 weeks or so without an attack, and my chronic migraine was reduced to a level 4 (for me, on the migraine scale - which is not comparable to the KIP scale....at least, not for me personally...). 

I was able to wean down by almost half on one of my meds, and was soon to be ditching the verapamil as well.  I didn't come off the meds prior to the surgery, but things were pretty out of control, even on the meds, though they did help SOME.  My goal was to get the implant, and then once I recovered from that, begin to slowly wean off the meds and to try to get to a med-free state (in terms of CH - other meds I take for other conditions cannot be stopped).  I was also not taking triptans much at all, and wasn't needing my O2 or red bull to abort very much either!  I went from 2-6 CH's a day to 0-2 a day, and the longest I went without a CH was 2 weeks. 

I was able to fully abort some attacks once they started simply by dialing up the intensity of the stimulator, which is why I wasn't relying on as much O2.  It took some time to play with the settings - I think I had 9 or 10 programs altogether on the remote, and I went through them constantly trying to find the one that benefitted the most.  I started off post-op with only 3 programs, and the ability to adjust the leads in like 5 different ways within each of these programs, but I still wasn't getting optimal coverage.  It really took the first few months before we had the leads programmed in a way that gave me stimulation over the majority of my head, which really helped!  By the time I had the stim removed, I knew which 1-2 programs seemed to work the best, but I also had an arsenal - if one didn't seem to be helping as much, I switched to another.  Sometimes the variation itself was a helpful thing - if my head got too "used to" one thing, I could change it up a bit.  The best part was not really needing my abortives much because I could abort attacks with the device, and the attacks that did come were not as painful and didn't last as long.  As opposed to K6-9 with K10's scattered throughout, I was having more like K4-5's, and instead of 45-90 minutes, they were lasting 20-30 minutes (unaborted).  Even ones that came on the left (my non CH side), which are usually hellacious, were not as bad!!  I was shocked, amazed, and very very very happy.

So it was a tremendous blow to lose it, back in September.  I had waited for 7.5 years for something that truly helped my headaches (going back to when I just had the chronic migraine, prior to having the CH), and I was very sad to lose the device.  I kept holding out hope that the infection would eventually clear and I could get a new implant, but I didn't really let myself get excited about it until now.  Even once I discussed a surgery date with the doc and his nurse, I wasn't excited because I still had to clear it with work.  Once I finally cleared it with my boss on Friday, I really felt like it was going to happen and felt very excited, but also nervous!!

Laurie - I got your PM, and I will definitely be glad to talk with you and Gary about the stimulator if Gary ends up going that way.  I'm so sorry to hear that nothing is helping Gary, either!  I hope they figure the fevers out - those sound worrisome, especially with how high they go!  And also, they'll want to be 100% sure he doesn't have some hidden infection prior to doing a surgical procedure, although I know you know that.  Sounds like thus far they haven't found an infection reasoning for the fevers, but it would obviously still be a concern!  I'm just hoping there isn't some other bad reason that he is having them!  If they clear him and the stimulator does seem like it's his next best option, I would be more than happy to talk with you both about it!  While it's not something that I would say "Yeah go for it!" to just anyone about, it is something to consider for those who have chronic, intractable (med-resistant) CH who have tried everything else to no avail.  (Won't get into it again here - but for those who may be prone to bringing this up, I didn't try the "alternatives" - I've explained my rationale behind that many times!)  I certainly hope that whatever they try for Gary works, but if you find yourselves heading this direction, know that I am here.  I also think that Michael would be more than happy to share his experiences - he is keeping excellent data on his ONSI.  There are a few others who may pop out of the woodwork who have also had the implant, but I would say Michael and I have posted about it pretty regularly.

Barry & Angie, Donna, Jerry, Kimberly - THANK YOU!!!!  Your responses mean so much to me, and I appreciate that you've all been here for me through all of the ups and downs of this!!

Donna - I have still been praying constantly for you and Judy, even though I haven't been posting here much at all the past few weeks.  I am really hoping that things are starting to turn around for Judy and that she is beginning to see some positive results from her surgeries.  She really is a hero, and I look up to you both a great deal for your strength.

Jerry,  Thank you so much for your recent email.  I'm sorry I haven't responded!  It means so much to me that you periodically check in on how I am doing!!  I know I'm terrible about responding sometimes, but just know that it made my day the day I got your email - really helped lift my spirits up.  It's so kind of you.  Amazing the impact a few kind words can have.   Thank you.

OK I'll shut up now!  Sorry for going on and on and on and on....so many times over the years!!  I'm just very very excited about the new stim implant, and understandably more nervous, but also glad that we have the knowledge we have now and that everyone will be on alert this time.  (Not that they weren't before, but even moreso this time...)  I have been muddling through the past few months, not feeling very hopeful about things, since it all went south and so much else was going on, but just in the last day or so, I've begun to see the sunshine again!

Hugz and PF wishes,
Carrie

Always good hopes for you, Carrie.   

Carrie,

You are indeed a trooper,determined and one strong Lady.

Thanks for keeping us updated.  Please do not hesitate to let me know if I can help in any way.  I'm probably only about 15 minutes from you now...heck, we're almost neighbors now that you have moved.

Well wishes being sent your way.

Good.   

Hope this all works out better this time, Carrie--and that it results in the painfree time that you hope for.

All the best,

George

Hi Carrie,

I'm glad that there's good news to share about your life.
I hope that this time around the surgery goes  verywell and infection stays away. All the best to your family as well!

And I'm glad that you have taken the time to share what you're going through, because it will help others who are considering the same option. And it's important to keep in mind that there are many options and threatments, which can help in great deal when the usual choices don't.

Hugs from Finland,
Sanna

Thanks so much for the replies, all of you!  I know I've not been on the board once again since posting this, and I feel terribly but it's been an extremely busy week!  I have spent all my time at work, sleeping, or at Penn State this past weekend!

I just wanted to once again thank those of you that responded.  It really does mean a lot to me!!

The latest update I have is that I am having my pre-op appointments and testing on Monday, December 29, 2008.  So that'll be the final chance to talk with the doctor about all the plans for surgery, as well.

Looking forward to this!!

Hugz,
Carrie

I've heard of people spending the New Year wired - but you're taking it to a whole 'nuvver level LOL

Good luck Carrie!!