New Daily Persistent Headache Support Group

Has anyone had this surgery? I came across some information on it yesterday, but would like to hear from people who have actually had it. My daughter, who is 14, has had a headache for 3 years and we have tried everything. The pain ranges from a 4-7/10 pain scale at all times. It seems to be getting worse. This surgery makes since as the back of her head where the occipital nerves run is so tender she does not want anyone to touch it. If you have had or no anyone who has had this surgery I would love to hear any information you can provide.

Thank you,

There are a LOT of people here who have done this (I am not one of them) with a huge variety of responses. Some got a good bit of relief, others don't seem to have gotten any at all...I don't really know why it worked for some and not others.

There are a number of older threads about it, if you search in the box at the top of the page "NDPH and decompression surgery" to find them all (if you really want that much information). The longest and hopefully most informative thread is here http://www.mdjunction.com/forums/ndph-support-forums/ introductions-personal-stories/127081-occipital-neuralgia- surgery/limitstart/380

It eventually got locked for sheer length so it doesn't have the current updates of how everyone is now, but it walks you through several people's experiences with the surgery.

It is important to get the current updates since I don't remember how optimistic people were being then (and some were too soon after surgery to know anything yet) and some of the more disappointing results came later (don't want you to get the idea that everyone had great results when they didn't).

Depending on how many different meds (and which ones) she has tried, there may be more options out there for her with those too, especially as she is getting older doctors may be willing to try more things with her (some are quite cautious with young teens, not that that is a bad thing, but it can be limiting). For me personally topamax and seroquel have been a helpful combination, but everyone seems to respond very individually to meds. We do have a running list of things that have helped someone here (needs updating I am sure, but we at least started it). http://www.mdjunction.com/forums/ndph-support-forums/ medicine-treatments/96227-what-has-helped-you-part-2

I hope that some of this is helpful to you as you are looking for information.

I haven't had the surgery but I wanted to ask if your daughter has tried occipital nerve blocks? If a lot of her pain is in the occipital region they may be useful for her. I have more of my pain in the front of my head but the blocks helped temporarily with lowering my overall pain and certainly helped control the occipital pain over more hours/days. Lots of people on here have had the nerve blocks, with varying success but it is worth investigating if you are looking for new options.

Thanks. She has tried topomax and couldn't tolerate it. She is very medication sensitive so it really is difficult to find something she can take. Currently takes elavil, diamox, CoQ10, B-2.

Thank you. I just sent her neuro an email asking her about occipital nerve blocks. Waiting to hear back. She has a lot of pain in the occipital nerve area (hurts to touch). It travels up her head and to the top. It appears the pain travels with the nerves and to where they branch off. She also has frontal lobe pain. However, I am thinking if we could possibly, with the nerve blocks, get rid of the pain in the back and top of the head it might relieve it all over her head.

Violet

The nerve blocks are definitely worth looking into. I'm not sure if she has tried osteopathy or cranial sacral therapy? If alot of her pain is at the back she may have some benefit from these. It seems that the people who have more neck/shoulder involvement in their pain get more benefit from this sort of thing. It is worth looking into if you haven't already.

Btw, not tolerating Topamax is pretty common. Lots of people have problems with it. It seems to be a drug with a lot of side effects!