New Daily Persistent Headache Support Group

Yes. Dr Reed's group did it. I tried to get a family discount because my name at the time was Reed... I got married in March (12 days before my one year stim anniversary). I had daily headaches and 3-5 migraines a week for 24 years. I actually fought with BCBS-TX for 8 months to get the trial approved. I finally had an IRO- which is a group of medical professionals who look at your case (what your diag. is, why the insurance company is denying it, etc). They agreed that there was sufficent documentation to approve the device as long as I showed improvement with the trial.

I'm not going to lie... I felt like I had be hit by an 18-wheeler for about 6 weeks afterwards. I had my surgery on Wednesday, discharged Thursday (worst drive home to San Antonio EVER) and was back at work on Monday... I would not recommend that. If I had to do it again I would have taken about 2 weeks off. The shaved about 2 inches above my left ear and about the same amount at my neck.

I would do it all again in a heartbeat if I had to though. I was thinking about moving back in with my parents and trying to get on disability because I was about to get fired because I was always missing work. Now I am married and we bought a house and we are trying to have a baby and I'm doing my pre-reqs for nursing school. It really is a life changing procedure!!! If you have any more questions or want to talk just PM me and I will give you my phone number!

Thanks everyone, for your info, and moral support, I know I would not be able to go ahead with it if not for all of your help here. I have tried quite a many treatments up until this point, and now, with the way I am feeling, with a headache that hasn't gone below a 7 since last sunday, I think I feel pretty ready to try this stim trial. I only hope it will work the way we all hope it will.

Thanks to Suki, MOHopefulmom, and Buggie, for the info on the stim unit and the procedure surrounding it. Knowledge for me, is power, so knowing what to expect means I don't anticipate surprises. I appreciate all your replies, I will keep you all posted with developments.

Debra

Hello to all, I am not sure if I an offer anything new on the stimulator trial, but I did mine 4 weeks ago for 3 days, and am now scheduled for the permanent in 2 weeks. Mine is an interesting set up, A Dr. here in Vegas is working with Dr. Reed's office to become a partner with him here in Vegas. Dr. Reed's office handled the insurance paperwork (wow can they work miracles)and Dr. McKenna (local Dr.) and Dr. Reed (who traveled to Vegas just for me)did the trial. I will have to travel to Dallas for the permanent stimulator, but I will have all post-ops here at home.

I found the trial to be more cumbersome than I expected, the battery packs (2) were large and were a pain to keep in place on my belt loop. The incisions for the 4 leads were uncomfortable, poking me depending on how I turned my head (sometimes causing me to curse out loud). The actual stimulation also depended on how I turned or held my head, I also felt the back leads more than the front ones. I tried turning the front up to a stronger setting, but it seemed either it was too strong or I could hardly feel it. My co-workers called me frankenstein as I had a bandage across my forehead and at the back of my head with lots of wires everywhere!

I was not able to shower, thankfully I only had 3 full days of the trial, but keep in mind I live in the desert and it's summer time...sweaty!! I had sort of long hair before the trial, they shaved a square in the back about 3in up, with that and the amount of tape used in the back, I had my hair cut short, but hair is hair and it will grow again, but I am liking the short hair too!!

The trial worked, I found that my head was 90% better with the stimulator than without. I am looking forward to the permanent, although after hearing buggie1117 tell her tale, I am fearful that I will not feel up to returning to work right after the surgery, but I'm afraid I have no time to take once the surgery is over, I will have to suck it up!

Thank you all for your information, I have been reading about your experiences for awhile now and I have nothing but great hopes and dreams of lives filled with joy, hope and freedom from pain!!!

Welcome to the group! Thank you for sharing. Feel free to start an intro thread and share as little or as much about your journey as you feel comfortable. That is so awesome Dr. Reed traveled to Vegas for you! I looked into an associate of his in Seattle, but he would only do the trial and I'd have to go to Dallas for the permanent, so I didn't even think the trial was worth doing since I couldn't do the permanent if it worked. I hope the permanent procedure goes well for you.

There is quite a bit they can do with different programs and even changing where along the wire the stim is felt, but there is that question of how the permanent will go vs. the trial. Its amazing the trial went so well for you. Will they let you work from home? Or, maybe due to extenuating circumstances they will let you take some unpaid days off. If your company has greater than 50 employees, you can file for FMLA...with that, they have to give you unpaid time off and secure your job (for qualified reasons such as surgery).

Although that could be a financial hit to take unpaid days off, I definitely have also read how folks felt like they got hit by a bus for days or weeks after. Most folks have a significant out of pocket portion for surgery (especially out of network) as well, so a week or two off shouldn't add too much to that. Hope to see you around here again soon. Best wishes.

WOW! A 90% reduction in pain with the trial! That is super! You can have high hopes for the permanent stimulator. My doctor says that even 50% would be great. I have read of some people not being comfortable with their lead placements, if its too uncomfortable for you, I would get them to move it a bit. It might just take you more time for things to adjust, it still is pretty soon after your surgery. Its unbelievable that you were able to have Dr. Reed come and do your procedure, he is just a far off dream for so many. It shows what doctors can do when they work together.

Good luck to you with the permanent stimulator, and don't worry about how you will feel, take it a day at a time, you might be pleasantly surprised by it not being as bad as you expect it to be. At least that's what I'm hoping for myself, lol.

I am scheduled for the trial in July. Dr Will is doing mine and I can't wait. We have made our first trip to Dallas and have atleast two more to go but it will be so worth it if it helps. We live about 13-14 hrs away and it is expensive but the chance of having pain free days are worth any amount.

I have been to many headache clinics all over the US and none compares to the Reed Migraine Clinic! The doctors and staff actually care about you and how you feel, your not just another patient. This place is really my last hope so why not go for it.

It is amazing that Dr Reed worked with your dr to treat you. Hope all goes well with your perm one.

Good luck auntegghead, on your upcoming procedure, I hope it gives you the relief you seek. One thing can definitely be said for all of us that get to this point- it didn't come easily! We have gone through much pain, and done many different treatments up until this point. We are extremely dedicated to finding help for our plight, as is every headache sufferer, you show that to be true by the lengths you go, and miles you travel.

Hope to hear good news.

auntegghead- Looking forward to updates! Good luck.

auntegghead - Please keep us updated on how everything goes for you, when in July will you be there? I am counting down the days (16)!!! I will be thinking of you and praying all goes well!!

Post edited by: MartaSue, at: 06/25/2012 12:53 PM

Hey guys,

I had a busy day yesterday. First an MRI of my brain, gotta check that all is in order inside, thank god, I have already heard it's normal. Then. I had my neuropsych testing, it took 4 HOURS! Believe me, that was enough to give the strongest of people a headache, let alone ME! It was mostly cognitive testing, they said they do that any time they will do surgery to either the brain, or cranial nerves. They are looking for problems that they can find through this type of testing, such as dementia, or memory problems. Apparently, if they do find such issues, this type of surgery then becomes a problem, because they don't want to add more stress to an already stressed situation. They DID tell me that I'm normal! Great to hear! Now its the countdown to surgery day, which is this coming monday, July 2. I will keep my fingers crossed for this stim trial to work as it is intended to.

Debra