New Daily Persistent Headache Support Group

Thanks for the update! Thats great they can do it so soon. Best wishes.

I just wanted to let you all know that tomorrow morning I'm going in for my stim trial surgery. I'm nervous now, but hopeful as well. I guess I won't know right away if it works, but I'm being given 10 days to trial it. My fingers are crossed! I will keep you posted on further happenings.

Debra

Good luck, Debra!

I hope that the surgery has gone well (since it isn't morning anymore, at least not here) and that you are able to get a really good trial and tell easily whether this is going to help you.

Post edited by: MaryR, at: 07/02/2012 10:15 AM

Hope everything went smoothly. Thats great you get a 10 day trial. I've heard often it takes awhile for the surgical pain to diminish enough to see how its working for the headache. Best wishes.

Hi to all,

I had the surgery yesterday, my doctor said it went well, and the reps from St. Jude, which is who makes the stimulator, were great, they taught me how to use the unit, and programmed it with a large range of stimulation for pain control. I was not expecting this amount of pain from the surgery though, nearly my entire head is throbbing with waves of pain, probably from the incisions they made, three in all, in different places on my head. I can't lie on those areas, I'm limited to my left side only, because of this pain. I'm back to taking painkillers to deal with it.

The stim unit is on, but how on earth do I know its working if I'm in so much pain? I'm supposed to chart this for thetrial period, but I have so much pain, I can't get a handle on the headache itself. When does the surgical pain start to subside? Any suggestions from those who have done this?

I also have a question that's going to sound kind of vain, in light of this bigger picture, but its bugging me nonetheless: I'm limited to sponge baths only, and no washing my head, I am a sight to behold, with a bandage wrapped around my head, but I have dried betadine on my skin and hair, that looks like dried egg yolk, Gross! Any ideas on how I can get some of it out? At least the bits that I can see.

I really hope this trial works for me, I know my doctor is looking for 50% pain reduction to consider it a success, has that been the case with some of you who have done the trial? I know someone mentioned reaching 80%, sorry, I don't remember your name now, that would be a miracle!

I've no more energy to write now, but I will keep you updated on how its going. I thank you all for your good wishes.

I had the occipital ONS implanted earlier this year and so I know what you mean about dried betadine and looking a mess. The medtronic rep put alot of tape on my neck to hold the wires in place. It was very uncomfortable, but fortunately, at my request, my doctor cut alot of it off so that there was only a small amount under the back of my head. I was able to disconnect the battery and then pile all the wires into my showercap so that I could take a shower from the shoulders down. I also went to a hairdresser and got them to wash my hair face down over the sink, keeping the incisions and taping dry.

I too was not prepared for the surgical pain, particularly after the final surgery. I was in hospital a total of 16 days. 11 days for an extended trial and then another 5 to recover from the final surgery. It was confusing trying to work out if the ONS helped or not and that is why an extended trial is of benefit because the surgical pain settles few days into the trial. I was suffering with menstrual migraine as well as NDPH at the time and so I had to use abortives a few days during my period. I think my neurosurgeon hoped the ONS would help my NDPH rather than the migraines.

My story doesn't have a happy ending as after 6 weeks I had the ONS removed. It didn't help my pain as was hoped and I couldn't see any point in keeping it in my body. Hopefully you will have a better outcome. Best of luck.

Post edited by: suki17, at: 07/03/2012 03:30 PM

Sorry to hear you are in so much pain. Of course I can't comment from experience, but I do read that by the end of the trial the surgery pain should be subsiding so you better differentiate. I hope the worst of the pain has passed for you. I've also heard dry shampoo being suggested. Wet wipes could also be helpful as they are only slightly damp so you can spot clean around your hairline. Have you tried turning the stim off and seeing if the pain subsides? I have heard some folks could not tolerate it being on the first few days. Best wishes.

I was lucky enough to not have much surgical pain. maybe since i had migraines for so long i am better able to tell the difference between migraine pains and surgical pains. i only had my trial for 3 days. i took a bath with my mom holding the battery and wires so they wouldn't get wet. i didn't leave the hotel room for those three days. you might want to try some lidocaine spray to numb your surgical sites. turning off the unit is a good idea too. sometimes the stimulation can feel like pain (even a year plus later) and slowly turn up the stimulation. that might help with figuring out which pain is which.

If you need anything please pm me. i can honesty say been there done that have the scars to prove it. good luck!!! I promise it can't get worse only better!!!!!!

I too hope the surgical pain is getting better. I don't have any experience so I will leave all the practical advice up to the ones who do. Thanks for the update. Wishing you all the best.