occipital nerve stim trial

[jeric]

Heys!!

Today I had my ONS trial... I have the same system that is used for spinal cord stimulation but it is implanted on my occipital nerve.

First off the surgery was a bit painful and uncomfortable because I ahd to be awake during it... and then once it was over I sat up and there was blood all over my face and hands, the people in the room stated that it looked like I was a part of a massacre... lol like thats a good thing to say to a patient.

It took a loooong time to get the thing in the right spot and a lot of removing and putting back in... which is veryyy uncomfortable.

Good news.... it's working for my headaches.... as of now anyway, I'm still a bit numb from all of the lidocaine injections I think.

I have 2 programs in the stim right now and I already know I'm going to have to meet with the rep again cause we programed it while I was still very numb and the stim is now wayyyy to strong when I'm not a numb! :) I can adjust it but when it initally comes on it's quite a shock! lol

I'm really happy with it so far.... though I wonder what other people's stim levels are... I don't think there is any one here with an ONS... but it's something that would be interesting to know. I'm learning so much more with it now as I play around with it. When we were programming it we went off of what I could feel and now I'm finding that I don't necessarly have to feel the stimulation for it to be helping me.... which is good to know.

The really annoying thing is that I can't move my neck right now! :( The bandage they have on my head/neck is so large and tight that I can't move my neck... it's quite fusterating. However I go into the office on Thursday so they can check the site and make sure there is no infection or anything and then I keep it in til the next week thursday.

So I can't shower for 10 days!! yikes!! I can take sponge baths so that's what I will do... I had two friends that are nursing majors and were going to help me wash my hair, but my dr told me today that I can't even get my hair wet!! My hair is going to get sooo nasty.... oh and on the topic of hair right now I still have enough hair left to cover everything up... my hair is very thick and even though all of the bottom part is gone my hair is thinner now, but I compared it to one of my friends hair and hers is only a bit thicker than mine right now. :)

*fingers crossed* everything continues to go well :)

[jeric]

Hi!

Mine is under my collar bone... and I like it. It's probably not the best place because I will probably have a small visible scar and possibly a bump, but it was what I wanted.

I choose aganist the back because then it would be abit harder to work the remote and use the charger.... especially while recovering since I'm not supposed to move my neck it would have been impossible for me to use my remote and I was told that I would more than likely need someone to help me charge.

My rep mentioned that he has seen them done under the arm pit... but we decided aganist that since a bra rubbing on it could be uncomfortable and cause problems later.

Also... when they were talking about my back they weren't going to go all they way down they were going to go to the right of my spinal cord and try and put it below the scapula.

I'm happy with where I have it... charging is a bit hard because at first the belt didn't work because it have to go under my arms but them I couldn't keep it high enough and keep loosing my connection... but then I added an extra part to the belt (its a strip that goes from the puch the charger sits in over my sholder and connects to the belt going around under my arms this helps pull it up a bit higher so I can wear the belt) You also get nifty sticky things you can use but I need to wait til I'm healed before I can use those... but I think those are going to work best.

Difently try different things and make sure you get the thing implanted in a place that will work for you! :)

Good Luck and keep me updated!!

[azleenie]

Thanks for letting me know about the battery.. My trial is over and It was very promising.. But I am going to have another trial where it is put at the spinal cord level instead of just sitting near my head/neck area.. I am a little nervous about this but I figure I should try all avenues before I just settle with what worked minimally. You know? But I know that I will have it put in permanently eventually, but I would like to know where you put the battery?? Since I am tall and its my neck, they want to put it just under my armpit, but I think maybe its better to just run it all the way to my buttocks... Some input from people would be so great...
Thanks!

[jeric]

Hi! I actually had the pernament implant put in 2 weeks ago. The battery does take some time to charge, but it seems to last a really long time inbetween charges. I think the time that it really take a looong time to charge is if you let the battery completly die... because them my rep told me it would take 2 times for charging for 3 hours to fully recharge. But... this is all of you have boston scientific... also it's good that we can let it die completly because other models from dif companies if the battery goes dead you need a new one put in. :0 good luck with your trial!!

[azleenie]

Hi, I am doing the trial right now in my neck/head on the right side. I pulled all that damn tape off cuz of the itching and slapped a bandaid on!! ha ha. I couldnt take it anymore. I am happy to say that my pain is almost gone. I had swelling muscles in my neck and my right eye would see only double with pressure behind my eye. Occasionally there wasnt a way I could open it all the way like my left eye. Anyway, even though where they put the leads, I am still thinking maybe I should have them go to the spinal chord level so that this all feels more permanent. I dont know yet. I have 3 more days till they take it out. I am not happy to hear that people are complaining about how long the battery takes to recharge. I was told it lasts 10yrs or up to that. Maybe they had a breakthrough on the battery lately. Who knows. I will ask when I see the doctor. I dont understand why you cant drive with this thing on. I was wondering if anyone has the leads put in down near their spinal chord in the neck and where are you all having the battery put? I'm not comfortable with the wires going from my neck to my buttocks to the battery. Would love more info like that. I think if anyone is wondering if they should do this trial, DO IT!! Its not that bad and you will be able to tell if it helps right away.. Will write more later on what I am deciding to do..

[jeric]

Thanks you guys!

Things are going well... with my headaches that it, it's helping them quite a bit.

However even though the stimulation is great and helping my headaches... I'm not sure the trial is worth the trouble right now, my neck is really sore and I hate that it's stuck in once place because of the large, tight bandage, that bandage is now itchy, and it's driving me nuts!! I keep tripping in stuff because I can't look down. Oh, did I mention it itches.... a lot!

I was supposed to go back this Thursday to the clinic but I can't because I have no ride there.... and this Thursday we are supposed to get a lot of snow so my mom can't drive the 2 1/2 hours down to take me to the appt... I just called in now to see what they want me to do... it's their fault I didn't know I would have to come in this Thursday til after the procedure.

Oh and anytime I laugh, cough or do anything that tightens the neck mucles it's a bit painful at the surgical site. :(

ugh.... sorry about that all I just needed to get that all out. On the plus side the stimulation is working. :)

[sandee1818]

Hi,
     I am so glad things went well for you. Thank you for keeping us informed of everything thats going on, it is helpful to others as well it keeps us up to date so we can help when we can. We can always give you support although I am not that educated in what your going through I will be here as the others will be too.
Keep up the good recovery and let us know if theres anything you need.

[Tuckamore]

Thank you so much for sharing with us. I am glad you are on your way to a solution and at least you do not have a HA. I guess we have to be happy for any relief we can get. And just think when it really works correctly and all the kinks are out. I am very hopeful that this will be effective.

We do have someone on ONS. It has been awhile and I will have to wrack my brain or check the archives to locate them. And I know we have some that have tried it also.

Also good news about your hair. But I, like you would have a hard time with no washing. There are some dry shampoo products on the market. They at least take the "greasy" look away. Usually they can be found at a Walgreen's type of store. I would ask on Thursday if you can use it.

Please continue to share with us. We all can learn with you and hopefully someone will pop in that can also share their experience. Does it hurt now that it is implanted? I'll be wishing you the very best and look forward to your updates.
Take Care, Tuck