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        Daily Chat >> General Posts >> ONSI Trial -- 1/28 Update
        
(Message started by: Lizzie2 on Jan 24^th, 2008, 8:15pm)

Title: ONSI Trial -- 1/28 Update
Post by Lizzie2 on Jan 24^th, 2008, 8:15pm

This is me from the first day that I had the stimulator implanted:
http://farm3.static.flickr.com/2042/2217073781_328d803948.jpg?v=0

Things are going well so far. The biggest problem has been post-op soreness from them putting it in. Today, however, I had off from work and didn't have anything else to do, so I finally got the chance to just rest and sleep all day. That was nice, and I didn't take any pain medication for the post-op pain until tonight. I worked yesterday for a 12 hour day, and that was rough because I really didn't feel that great!

So when the rep from the company set up the stimulator, he set it up so that certain leads are positive and certain are negative, and I have to say that almost my entire head feels stimulated when it is on! That is a cool feeling - feels like someone is massaging my head. I like the lower frequency settings versus the high frequency settings, and the lower frequency feels more like a light vibration versus tingling.

Today I had 2 CH hits for the first time since I got the stimulator put in. I was able to tolerate them without treatment by turning the stimulator up "louder" than the pain. Normally I have the stimulator set at level 2 or 3 of amount of stimulation, but when the attacks hit (as soon as I felt the pain), I turned the stimulation up to level 7 or 8. (I can go up to 20.) It seemed to then overpower the pain so that the sensation I was feeling most was the stimulation, and the pain was duller.

Tomorrow I'm going back to the pain center, and I'm supposed to get the stimulator out tomorrow. However, we're going to ask if I can keep it through Monday afternoon so that I have a better chance to evaluate it. The first few days, the post-op pain was getting in the way of me fully evaluating my normal headache level. Just today was the first time I felt it had a truly fair chance for me to see how it was working. I really do think it is helping, but I would like a few more days to really test it out.

So that's that! Lots more I could say about it, but I wanted to just give an overview. I have 5 different stimulation programs that I can play with, but I've spent most of my time on the 4th of those programs, as that one seems to feel the best! If anyone would like to know more or has any questions about it, please let me know. I'm also keeping a daily diary as to how it is helping, as per requirements for the company/pain center, so I have evidence of how it is working for me!

Thanks again for all the support and PMs!

Hugz,
Carrie :)

Title: Re: ONSI Trial Update w/Pic
Post by Sean_C on Jan 24^th, 2008, 8:20pm

Definately keep us posted on your results Carrie.

Glad to see your smiling ;;D

Cheers [smiley=me&mb.gif]

Sean....................................

Title: Re: ONSI Trial Update w/Pic
Post by Gator on Jan 24^th, 2008, 9:00pm

Thanks for the update, Carrie! I hope they let you keep it in few more days so you can get a more complete picture of how it will work for you.

Keep us posted. It will be interesting to follow the progress from trial to final implant if that is the way you decide to go.

Got my fingers crossed for you.

Mike

Title: Re: ONSI Trial Update w/Pic
Post by E-Double on Jan 24^th, 2008, 9:00pm

luv ya!

Hope ya get what ya need

Title: Re: ONSI Trial Update w/Pic
Post by Grandma_Sweet_Boy on Jan 24^th, 2008, 9:07pm

Carrie - I sure hope this works for you. You need a break and maybe this will be it.

As the others have said, please keep us posted.

Carol

Title: Re: ONSI Trial Update w/Pic
Post by Mr. Happy on Jan 24^th, 2008, 9:17pm

on 01/24/08 at 20:15:36, Lizzie2 wrote:

I have 5 different stimulation programs that I can play with, but I've spent most of my time on the 4th of those programs, as that one seems to feel the best!

Sweet Madre de Haysoos.
RJ

Title: Re: ONSI Trial Update w/Pic
Post by Sean_C on Jan 24^th, 2008, 9:59pm

on 01/24/08 at 21:17:13, Mr. Happy wrote:

Sweet Madre de Haysoos.
RJ

LMAO you took that out of context [smiley=laugh.gif]

Go catch a fish or sumtin [smiley=laugh.gif]

Title: Re: ONSI Trial Update w/Pic
Post by Gator on Jan 24^th, 2008, 10:26pm

on 01/24/08 at 21:17:13, Mr. Happy wrote:

Sweet Madre de Haysoos.
RJ

ROFLMAO http://bestsmileys.com/lol/13.gif

Title: Re: ONSI Trial Update w/Pic
Post by Mr. Happy on Jan 24^th, 2008, 10:30pm

on 01/24/08 at 21:59:56, Sean_C wrote:

LMAO you took that out of context [smiley=laugh.gif]

Horsehockey.
Liz is a Tart, and that's that.

YOU should be so lucky.
RJ

PS Liz..... you look great in gauze and duct tape. Er....Baby.

Title: Re: ONSI Trial Update w/Pic
Post by Lizzie2 on Jan 24^th, 2008, 10:48pm

LOL Randy you are a perv....

To the rest of you - thanks for the messages!

Title: Re: ONSI Trial Update w/Pic
Post by Melissa on Jan 24^th, 2008, 10:49pm

Wow.

I have no words really other than I don't think I would be able to try such a thing.

Thanks for letting us know how this is all going for you Carrie!

hugs,
mel

Title: Re: ONSI Trial Update w/Pic
Post by cash5542 on Jan 24^th, 2008, 11:00pm

How is it impacting your migraines? It sounds like so far things are going well. Keep in touch. Take it easy with work too!! You are so brave.

Charlotte

Title: Re: ONSI Trial Update w/Pic
Post by Lizzie2 on Jan 24^th, 2008, 11:28pm

For the migraines - same as with the CH - if I turn the stimulator up so that the intensity is higher than the severity of the migraine, it seems that the stimulator is mostly what I feel. The migraine is still there, but seems to move to the background. This is part of the reason I want to keep the stimulator longer, however. Ultracet really knocks my migraine down to a low level....like a 3 or so, and I've been taking the ultracet for the post-op pain, so my migraines have been better than usual. I would like to evaluate the stimulator without the addition of the ultracet to really examine how it is working. Today I had the chance to do that for the first time until the evening when I finally took the dose because I just couldn't hold off anymore.

So what it comes down to is that I have to turn the stimulator up "louder" than whatever pain I'm feeling, and then it seems to work....regardless of whether or not I'm having migraine or CH pain. Very cool.

Title: Re: ONSI Trial Update w/Pic
Post by Lizzie2 on Jan 24^th, 2008, 11:30pm

Oh and with the CH hits, however, I still had the autonomic symptoms of stuffy/runny nose and watery eye on the right side (which is my CH side), so that was weird since the pain was actually much less!

Title: Re: ONSI Trial Update w/Pic
Post by Ray on Jan 25^th, 2008, 12:05am

Carrie:

Thank you for the updates and I'm still hoping for the best for you! It's hard to pull off the tape and gauze look, but you are actually quite fetching that way.

Love ya hun,

Ray ;;D

Title: Re: ONSI Trial Update w/Pic
Post by Ghost on Jan 25^th, 2008, 9:38am

Ok ill ask , does that thing tivo? ;;D ;)

Great to see you up and around and please keep that smile going.

Mike

Title: Re: ONSI Trial Update w/Pic
Post by George_J on Jan 25^th, 2008, 9:55am

Sure hope this procedure gives you what you need, Carrie. Good luck.

All the best,

George

Title: Re: ONSI Trial Update w/Pic
Post by sandie99 on Jan 25^th, 2008, 10:19am

Thanks for the update, Carrie! :)
I hope it helps you.

Lots of hugs,
Sanna

Title: Re: ONSI Trial Update w/Pic
Post by barry_sword on Jan 25^th, 2008, 12:44pm

Carrie, good to hear you are getting some relief from this procedure. Thanks for the updates and keep us up to speed on this. You are a true trooper!!! :)

Title: Re: ONSI Trial Update w/Pic
Post by Lizzie2 on Jan 25^th, 2008, 4:26pm

Hi Everyone - Thanks so much for the messages here and the continued PMs - they really all mean so much to me! I've felt like you guys are with me every step of the way with this, and that really makes a difference knowing that you've got people pulling for you! I know it has helped things go as well as they are going - clusterville's good thoughts/vibes/prayers are working once again, as I have nothing but good things to say about the stimulator!

I just got home from the Pain Center for my follow up appointment there. I am keeping the stimulator now until Monday at 3:30, when I'll go see my doctor after I get off work and have the stimulator removed. This will give me a little bit extra time to evaluate it since I felt that yesterday was the first really good day that I had to evaluate it. My doctor took the bandage off today to look at the sites of insertion for the electrodes, and he said everything looks great. (No redness, no swelling, no signs of infection, etc.) He then put the bandage back on, but it's not as tight as before, and I actually have less pain in the back of my head now! That's very helpful. I hadn't taken any ultracet yet today, but I had been thinking that the back right side of my head was really starting to ache a lot, but now that it's been rewrapped, it feels much better!

Once again, everyone was so extremely nice at the pain center! I really have had nothing but good things to say about everyone who has helped us. They have all been so friendly, understanding, and nonjudgmental. Plus they are informed about my conditions, and that is a huge plus! I worked with a new fellow today who was very good, and then my attending physician came in as well.

I found out that they try to use the same stimulator company for both the trial and permanent stimulator. The reason this is important is that the rep from the company specially programmed my stimulator so that there are certain positive/negative relationships between the electrodes as I said in my first post. This was actually a new set-up, and my doctor had never done it that way for anyone before. Because this seems to be causing almost my entire head to be stimulated, I want to make sure that if I get the permanent stimulator, they can "wire" it the same way, giving me the same relief. I asked today if it could be replicated with the permanent stimulator, and they said that it should be able to be repeated. They said sometimes with the biology, it just isn't possible to repeat it exactly the same way, but that the plan is to try to replicate the experience and setup as much as possible. I was concerned that if we switched to a new company for the permanent stim, then the same rep wouldn't be involved who did such a nice job on the trial setup. Apparently though, they will try to use the same company, so the rep should be involved with the permanent stimulator as well, if I decide to get that one.

So all this is very positive! I'm thinking that if I had to decide today on the spot, I would go ahead with the permanent stimulator. However, I am glad that I'll have a few extra days to really test it out through the weekend and Monday before having to have the trial removed and moving on from there.

The doctor said that the other guy who had one put in the same time as me ended up not liking it. He said the stimulation bothered him and that he felt it was stimulating his eye, even. It's a shame because it sounded like that guy was having a lot of problems with both CH and migraine, too. I feel very lucky that this has felt so good for me and helped so much, even in just the trial phase. I didn't know what to expect, but I didn't think I would see so much benefit from the trial! Very excited!

I'll keep you guys posted on what else happens with all this! Thanks again so much for all the support. I can't even begin to say how much it has meant to me to have this family beside me every step of the way with this. I feel very blessed to have such a wonderful bunch of friends.

Hugz,
Carrie :)

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by Jonny on Jan 25^th, 2008, 5:12pm

GO ROBO-KID!....LOL :-* :-* :-*

;;D

Title: Glad to hRe: ONSI Trial Update w/Pic - Update 1/25
Post by BlueMeanie on Jan 25^th, 2008, 5:47pm

Glad to hear the stimulator seems to be helping. Vibes that the permanent one works for you Carrie.

ps.. you got me confused. I thought your name was Carrie then saw Lizzie as your screen name. Had to take a double take. ;)

Title: Re: Glad to hRe: ONSI Trial Update w/Pic - Update
Post by Lizzie2 on Jan 25^th, 2008, 6:05pm

on 01/25/08 at 17:47:11, BlueMeanie wrote:

Oh dear, don't make me go through the story! hehe When I first joined the chat room and ch.com, I was going by my middle name, Lizzie, which is a nickname that my dad and several people close to me have always called me by. However, there was already a Lizzie here (ASB), so I became Lizzie2. Then a couple of people found out that my first name is actually Carrie, so they started calling me that. And now that basically most people know my first name is Carrie, I go by that with most people here, but I never changed the screenname permanently because I like Lizzie2 as my screenname! Sorry that it is confusing though!! Thanks so much for your comment and support!!

Jonny, some of my friends are starting to call me the bionic woman!

And to answer a question from Mike (ghost) above, no, it doesn't do Tivo! Wouldn't that be cool?? hehe

Hugz,
Carrie/Lizzie/L2 :) :-*

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by Charlie on Jan 26^th, 2008, 2:21am

Good luck Ms. Bionic. http://www.netsync.net/users/charlies/gifs/wild girl.gif

All this new-fangled stuff.....kids. Damn. I gotta look at my new Sears catalog....don't wanna be left behind.

Great stuff Liz and keep posting.

Charlie

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by Mike_P on Jan 26^th, 2008, 4:19am

Carrie, great to hear things are going well. The stimulator sensation is quite pleasant isn't it. After a few weeks you won't even notice it. You also mentioned that you had no redness around where they have inserted the wires, that's really good. Don't forget it can take some time before you reach maximum relief. Over here in the UK the won't use Antibiotics until you get an infection, however I understand that in The States they run concurrently, is that what they have done for you?

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by Maffumatt on Jan 26^th, 2008, 8:43am

Wishing you the best Carrie, I know you deserve it.

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by DennisM1045 on Jan 26^th, 2008, 8:49am

I couldn't be happier with the outcome so far. You have survived, you seem to be recovering nicely and are getting some relief for your efforts.

You are an amazing person Carrie. A fearless pioneer on the frontiers of pain. My hat's off to ya.

I couldn't happen to a nicer person ;)

-Dennis-

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by Lizzie2 on Jan 26^th, 2008, 12:34pm

on 01/26/08 at 04:19:53, Mike_P wrote:

Hi Mike!

Thanks for your message and for your PM! Your input on all this means a lot to me, given that you have experience with this! For the trial, I was given antibiotics in the operating room and then a 5 day prescription of Keflex, another antibiotic to take as a precaution. For the permanent procedure, I have been told that I will also be given antibiotics again. This is okay by me, as I've spent the last year and a half on methotrexate, which is designed to knock back my immune system. I'm off the methotrexate for the procedure and will be off for the permanent surgery, but still - I like the extra precaution!

At any rate, yes, he looked at the skin for my trial sites and it looks good - no redness, according to the doctor. I can only hope that I tolerate the permanent implant so well! I found out via email last night that I should be able to stick with the same company for the permanent implant, as well. We are going with ANS, and they have been very helpful so far with my trial.

I agree that the sensation is quite pleasant. I have some questions for you actually. Do you have some external control over what stimulation program you use for the permanent stimulator? Can you turn it off and on as you wish? Right now, I like a couple of different stim programs depending on how I'm feeling - will I be able to use both with the permanent implant? If you can't answer these, I can definitely ask the company rep, too. I notice when I have the stimulator on, that I pay less attention to it over time. I'm really looking forward to the permanent one!!

To everyone else - Thank you so much for your messages!! You guys are so sweet and just the greatest bunch of friends!! :-*

Hugz,
Carrie :)

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by sandie99 on Jan 26^th, 2008, 1:05pm

Thank you so much for keeping us posted, Carrie! :)
Lots of good luck with the rest of the trial as well.

Hugs,
Sanna

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by Mike_P on Jan 26^th, 2008, 6:13pm

Hi Carrie,

The control unit you will be given is about the size of a TV remote and will allow you to increase or decrease the strength of the stimulation. You can of course turn it off. Your neuro has a master controller which lets him/her "move" the stimulation around the head according to where the wires are. You will soon find the level you feel comfortable with. I believe the temporary unit which you have, has about the same control as the remote. I didn't have the temporary, external battery pack as Prof Goadsby went straight for the internal pack. Have they told you where they are putting the battery unit?

One other thing you should be aware of is in the 8 cases performed over here since 2003, mine was the first, by Prof Goadsby's team,a few of the cases,including mine, the attacks actually got worse for a while before they levelled out and then over the next few months decreased in intensity. After a year or so they levelled out again to a permanent level not above a Kip 4 or 5. Unfortunately, despite protracted correspondence with The Lancet who published the report on the 8 cases they wont allow me to put up the report on any website. You should be able to get a copy though through your contacts.

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by Lizzie2 on Jan 27^th, 2008, 2:39pm

Mike,

Is that the 2007 article entitled "Treatment of medically intractable cluster headache by occipital nerve stimulation: long-term follow-up of eight patients" in the Lancet by Goadsby, et al? If so, I actually have a copy of that article, and an article published in Lancet Neurology, as well as the responses to both articles. I got them from my university access to the journals, and I actually provided those articles to the neurosurgeon, even though he already knew about them, but didn't have hard copies in front of him. We talked about the negatives of having an 8-patient sample, but then again, with CH, sometimes that's the best you're going to get - especially with something as specialized as the ONSI. I have to re-read the articles as I didn't realize that some of you had worse hits at first, and then had them level off. I knew you reported that the stimulator worked better after several months, but I didn't realize it made the hits worse in the beginning. I haven't noticed that, but I'm using the trial stim right now - so it's not exactly the same.

Now - I heard you were either having yours removed or that you had had it removed....heard that from Dr. Matharu, actually when he was here in the States. May I ask why you are having it taken out when you feel it has kept the CH less than K4-5? I know Dr. Matharu said something about yours being unsuccessful, but I would think that having headaches reduced in intensity to some degree means some measure of success, no? I feel like I don't know the whole story, which is why I'm asking! But don't feel like you have to respond here. You can also tell me via PM or at my email, which is LizzPiano (at) gmail (dot) com.

So about the battery pack - my neurosurgeon told me that I can have it implanted in one of three sites - chest, abdomen, or hip/buttock area. As of right now, I would like it implanted in the chest. I spoke with the ANS rep, and he felt that would also be the best location due to the least amount of distance between leads and battery pack. Where was yours implanted? My neurosurgeon said there are pluses and minuses to all 3 locations, and even moreso with women. He said he never tells women where to get it - he lets them choose for themselves! haha

With the remote - my mom wants to know what happens if I lose it? haha I imagine that would be an expensive investment! I'll almost want to have the thing hard wired to my wrist so that I don't drop it or leave it somewhere by mistake! I told people at work that it would be controlled by a remote, and they laughed and said then they could really mess with me while I'm working! ha...

Anyway - thanks so much for all your help!

Take care,
Carrie :)

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by Mike_P on Jan 27^th, 2008, 4:32pm

Hi Carrie,

Yes it is the report "Treatment of medically intractable cluster headache by occipital nerve stimulation: long-term follow-up of eight patients" There were a number of inaccuracies in the report. The Institute of Neurology and Neurosurgery is really good at treatments however, their research is perhaps not as it should be. I know a number of the recipients in the report well and all their experiences were not reported on. One for example was treated for CH and in fact she had Migraine. Another had to have the wires re-positioned on four different occasions because they moved and on one occasion actually broke. Another patient was virtually pain free within a week and remained that way for quite a few months.
My batteries went three times, they only lasted a year, and in March 2006 I decided despite resistance from the neurosurgeon not to have the battery replaced as I wanted to see if the attacks reverted back to their former level. This didn’t happen they stayed at the same intensity i.e. Kip 4 or 5 so in October 2007 I had the stimulator removed. I believe the stimulator reformatted my brain on what I hope is a permanent basis.

I had the battery inserted under the collar bone. Frankly for a man this is probably the wrong position, not enough flesh, for women I can see some benefits ‘cos you have those two nice lumps which we men don’t. However you do need to be fairly buxom, I know of one recipient who is quite large and she found the battery pack fitted her breast really well. I went up to see her after the operation; we swapped stimulator packs and sat on her bed stimulating each. A first for ONSI I guess. If I had it again I would actually have had it put in my stomach. Not sure if the stimulator is common to all users I assume if you did lose it they would have to reprogram another one. However in practice you will find a level and then not bother to carry it around with you.

Hope this information helps

Mike xx

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by Lizzie2 on Jan 28^th, 2008, 5:06am

Mike,

It's funny how articles never really show quite the full picture! I had a case study written about me once, though, and I was given the opportunity to look the part of the article about me over. I actually gave quite a lot of input into it, and I was pretty happy with the final product! It was on steroids, avascular necrosis, and severe headache (both CH and migraine for me).

So the batteries are what did it - I'm very lucky that I'm getting my stimulator at a time when they have rechargeable batteries! I shouldn't need a new one for about 7 years, but then I suppose they could always malfunction somehow and require a new one sooner, but I'm hoping I can go at least 7 years with a battery, or perhaps longer if I'm not using it at max power all the time. I've had the trial on quite a lot, but I haven't had it on a high output for the majority of the time unless having a bad migraine flare-up or a CH attack. I actually turn my stimulator up significantly when having bad attacks, so for that, I would probably need the remote unless I get into a different rhythm or the stimulator prevents attacks from getting as bad!

Thanks for sharing why you had yours removed - doesn't sound like a failure then afterall if you are thinking it has rewired your brain somehow! I think that is really cool, and if it reduces the pain so that you never go above k4-5, that is an amazing thing!

Funny with the story about where to place it. This is a dilemma that I awoke thinking about even this morning. I keep thinking my chest is the best place for it - and, um, yes I have enough "extra tissue" there to put it! ;) However, I really don't know how that will look cosmetically or what other possible implications that may have. I wonder that another area might be better - although my neurosurgeon did say that for the abdomen, women hit this area if, for instance, at the sink doing dishes. (Wot? Men can't do dishes? LOL) Or with the hip/buttock, he said the same thing - women don't realize how much they lean their hip against counters/tables/etc when standing, so sometimes that location works out being painful. The company rep said the only bad thing about putting it farther away is that ultimately your body will begin to grow around the wires, and even if you've got extra slack to allow you to bend in half if you want, eventually tissue will form and the wires won't slide as easily through the body. So for that reason alone, I think the chest is the best spot because then all I have to worry about is range of motion of my head, versus range of motion of my entire upper body. They seem to have a good anchoring technique now, but lead migration and cracking still scares me quite a lot. My nsg said that of the last 15 patients he's done, none of them have had complications with that so far. Fingers crossed!

I'm getting the trial out today at 3:30pm. Even though I'm excited to go back to normal, and especially excited to be able to take a shower tonight, I'm actually a little sad to be finished with the trial! It has felt pretty good, but now is the time to move onwards and upwards towards the next phase. I will ask this afternoon how to go about the next step, which is scheduling a meeting with the neurosurgeon to schedule the surgery. I would like to meet with the nsg one more time before scheduling surgery as I have a few more questions for him.

Thanks again for all your help! Have to get ready for work - one last time of getting ready with the hassle of having this thing in place! hehe

Take care!
Carrie :)

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by sandie99 on Jan 28^th, 2008, 11:27am

Thanks for the update again, Carrie. It's been great to read about your experiences with this trial. Thank you for sharing it. :)

Hugs,
Sanna

Title: Re: ONSI Trial Update w/Pic - Update 1/25
Post by Lizzie2 on Jan 28^th, 2008, 5:02pm

Got the trial out at 3:30pm today, which was fine - no problems whatsoever with that other than a little soreness right as he was removing it. Of course, right now I have the migraine from hell and pretty much want to puke, but at least I know the stimulator was working. When I turned it off, the bad headaches would kick up invariably within a certain amount of time, and now it feels back to its old self, which is really freaking depressing after the last week of feeling much better with the trial stimulator. I miss it already, even though I am glad to be able to take a shower. The back of my head feels really strange with a lot of my hair shaved off, but I'll get used to it!

I called the neurosurgeon's office once my dad and I got back to the car to set up my next appointment with the nsg. I just need one more appointment with him to ask a few questions before we schedule the surgery, if all goes as planned. Unfortunately, the first appt with him wasn't until mid-March. I asked if there wasn't any way I could see him sooner, and the secretary put me through to the voicemail of one of the surgeon's administrative assistants. I left a message at about 3:45pm or so, and they didn't call me back today, but I didn't expect they would. I hope they call back tomorrow - I'll also be at work tomorrow so I can always walk over to the office and plead with them. Maybe if they see a patient in scrubs who works for the same hospital, they'll take pity on me!

I really want the stimulator implanted ASAP now. I have to wait 4 weeks at least for the sites to heal from the trial, but I would like to get the ball rolling with my next appt with the doctor and then at least schedule the surgery. That way I know how long I have to wait for, and it's not some unknown amount of time. Now that I have seen something help, I have mixed feelings - depressed because right now I feel like crap and I wish I had the stimulator back, but also really excited at the hope of a permanent stimulator really helping me. I just want to get the ball rolling with respect to scheduling all this stuff, and then I won't feel so bleak. Right now it's hard not knowing how soon they'll be able to get me in - I really don't want to have to wait 2 months to see the doctor and then several more months to get the surgery, when I know it will help me. Even though I know the surgery will be painful and it will take some time to heal, the sooner I get it done, the faster I am moving ahead towards relief. It is difficult to be patient when I have felt something so much better than where I'm at now, but I'll try!

Thanks again for all the support! Hopefully I'll have some encouraging news by tomorrow night and at least have an appointment in the somewhat near future!

Hugz,
Carrie :)

Title: Re: ONSI Trial -- 1/28 Update
Post by E-Double on Jan 28^th, 2008, 6:01pm

:-*

Title: Re: ONSI Trial -- 1/28 Update
Post by LeLimey on Jan 29^th, 2008, 1:57pm

So how are you feeling today Carrie?

Title: Re: ONSI Trial -- 1/28 Update
Post by Lizzie2 on Jan 29^th, 2008, 8:34pm

on 01/29/08 at 13:57:38, LeLimey wrote:

So how are you feeling today Carrie?

Thanks for asking. :) The back of my head is still actually quite sore, but it's getting better. The headaches are back to their normal ways. Every once in awhile, I can literally "feel" the way the stimulation felt, which is a very weird sensation. I just had it on so much for the last week that I guess my body still remembers the way it felt. Had a couple of CH's today, but I managed through, as per the usual status quo.

It's hard having the pain back to normal, but I really do have a lot of hope about the stimulator, and that will carry me through. It is so nice to have hope that something will actually help for the first time in years.

I got more news from the company that makes the stimulator last night, which will be affecting my decision. I may not have the surgery now until April or May as they have a new product coming out that may be worth waiting for. This is hard because I really do want to get the stimulator ASAP, but I also want to get the best device for me, too! We'll see! Lots of choices to make.

Of course, I didn't hear back from the neurosurgeon's office today, and when I left the message yesterday they said they would call back within 24 hours. I didn't want to call again today because I dont' want to be a pain in the ass and then have them not want to help me at all, so I figured I'd give it 24 hours. Well...no call. So tomorrow I will call again and see if I can get in to see my neurosurgeon sooner rather than later! I have a lot to discuss with him, and I very much need his advice!

Thanks for asking how I'm doing today. :) I miss chatting with you!!

Hugz,
Carrie :)

Title: Re: ONSI Trial -- 1/28 Update
Post by Lizzie2 on Jan 30^th, 2008, 7:57pm

Got a phone call back from the neurosurgeon's office today. He's going away for February, but will be back the last week. They said I can schedule a follow up appointment with him or I can go right ahead and schedule the surgery, and then I would be seeing the doctor the week before, doing a cardiac checkup and pre-surgery testing all the same day, so that would give me time to ask questions with the neurosurgeon one more time. That would have been the easiest thing to do, if the rep hadn't told me about a new product coming out in April or May. So I said that I really would like to discuss this new update with the surgeon to determine if he thinks I should wait for that or if I should just go ahead with the surgery with the current product on the market. The woman I was speaking with said that she will discuss it with the surgeon tomorrow, and then either she or the surgeon will call me back, as perhaps this is something we can discuss over the phone instead of making an appointment for it. I thought that was very cool!

So hopefully tomorrow I will know if I am getting the surgery soon or waiting for the new device to come out later this spring. While I would like to get the surgery ASAP, if he feels it is worth it to get the new product (which I'm thinking might be beneficial for me), then I would definitely hold off until the product is on the market. I am also waiting for the company rep to get back to me on some questions I've asked about the current versus new product that will be available.

Exciting times! I work tomorrow from 7a-3p, but hopefully I will still be able to talk with someone from the surgeon's office to determine what the plan is! I feel better just having a plan at all!

Take care,
Carrie :)