Occipital Neuralgia

[Rebecca2600]

I am a 28 year old who has been battling a headache for around 11 months. I have seen 3 doctors now and have been refered to a pain management specialist to see if I can get a occipital neurostimulator put in me. I have been on numerous medications during a trial and error effort. The only thing that has worked is pain killers, I have had steriod injection blocks put into the back of my head and those didn't even help at all. I have had numerous testing done and they can not find anything. I am at the point with my treatment where the doctors do not even know what to do anymore. I have a headache everyday and sometimes they get so bad I can not even get out of bed. I am so tired of taking medicine and living my life in pain! I have questions and concerns about this neurostimulator. To start off with how do they install the device and what is the recovery time from the procedure? Next, I am concerned about it throwing my heart rate off or it zapping me! Lastly, is this a surgery that I get put under for the procedure or do they keep me awake for it? I am having a hard time finding answers to these question while doing my research. Also, will I have wires hanging out of my body? Do you feel this is a good decision to try for some relief at my age? PLEASE HELP ANSWER THESE QUESTIONS.
Thanks in advance,
Rebecca2600

[PainCareNH]

Hi Rebecca,

I'm very curious about this. Did you end up getting the procedure?  How did it go?

~Heidi

[Rebecca2600]

Thank you so much Lisa and Nancy!! I will get in contact with y'all! Any help with this decision would be appreciated!!

[Easygoing1]

I have read your post and I cannot empathize enough with everything. I am the woman Nancy was telling you about that just had the stim implant. please go to the website Nancy references above and send me a private message and I will send you one back with my telephone number. I would love to speak with you and answer any questions I can and tell you about my experience. I am not quote up to typing a long blog at the moment but really would love to speak with you. I just joined this site to post to you. I will see if I can PM you here, but if not please co tact me at FPA website so we can talk. hope your pain level is bearable. I am lisafree2 there
Lisa

[nancy99n]

Hi Rebecca,

I have Trigeminal Neuralgia and go to a website called http://www.fpa-support.org/

There is a woman there with ON that recently had a trial stim implanted and had 70% pain relief.  She said it was an occipital neuromodulator. (they are doing some trials to use this for severe migraine sufferers because the occipital nerve is the nerve affected with migraines.)  She had her surgery done in Pittsburgh, PA.

Her blog is at URL:  http://forum.fpa-support.org/forum.aspx?g=posts&t=2724  

You have the ability to send a personal message on that site (a "PM") and she would be able to give you more details.  She really researched the device and the surgeons before she made the decision to have it done.

Wishing you the best!
Nancy