New Daily Persistent Headache Support Group

To all who are interested,

I know that Chloe has already mentioned this new study a week or so ago, but here are some of the specifics of the study results themselves. Hope this helps.

Just this month in Plastic and Reconstructive Surgery (the leading plastic surgery journal in the world), Dr. Guyuron published his five-year results with surgical decompression for migraine surgery. The findings of this study show that relief of headaches persists even five years from the time of surgery. More specifically, at five years post-surgery, the average number of migraines per month were reduced to 4 from 11, average migraine intensity decreased from 8.5 out of 10 to 4.5 out of 10 and the average duration of a migraine if and when it occurred was reduced from 1.4 days to 8 hours. Just as impressive were the findings that 88% of patients still reported a significant decrease in their headaches after five years and that 29 reported elimination of their migraines altogether! These results suggest that surgical decompression can produce a lasting if not permanent degree of relief from the debilitating headaches that affect so many people worldwide.

Dr.P.

Hi Dr. P,

This is very interesting data, and definitely sounds potentially helpful to migraine sufferers. Did Dr. Guyuron separate out migraine sufferers from those with NDPH? Data on outcome measures for NDPHers would be helpful.

Thank you for sharing!

Hi ACsmom,

The study did not specifically differentiate between migraineurs and NDPH. However, as you probably know, there are many different headache types (over 100 classified by the International Headache Society) and there is very likely an overlap between patients. For example, I see many patients who have chronic daily headaches and complain of those as well as exacerbations of their baseline headaches over and above those. My anecdotal results with this type of surgery so far indicate that both seem to improve following surgery. So that is a roundabout answer to your question. Hope that helps.

Cheers.

Dr.P.

Thank you Dr. P ! I do think it is overall very promising. However, I have noticed anecdotally that those on this Forum with "just" the 24/7 NDPH seem to have mixed results with the surgery. Some have found it helpful, others not at all. I guess I am particularly cautious because I am in contact with two parents from the Forum whose teens have had the surgery. In one case there were no positive results. In the other, the results were helpful but short lived (pain returned within the year). It was very heartbreaking.

Perhaps there will be studies at some point that do differentiate between migraineurs and NDPHers. I know it is difficult. Still, I am delighted that there is ongoing research out there....

ACsmom,

I agree that it is important to be cautious and it is nice to see that there are educated patients out there who are speaking with one another. I would add to your comments that two of the key determinants of a successful outcome are: doing the operation(s) correctly and doing them for the correct indications. If you do the operation incorrectly, the results won't be positive. Similarly, if you do the correct operation, but on someone who is not a good candidate, the results will not be as good. For these reasons, among mamany others, I think it is imperative that patients seek out those practitioners who have a particular interest in and experience with peripheral nerve surgery.

Cheers.

Hi again Dr. P,

I totally agree that the surgery needs to be done by the right physician/surgeon and with the appropriate indicators for surgery in place as well. As far as I know, folks on the Forum have been very judicious about who they choose to do the surgery, If you look through some of the old threads, you will find the few physicians that people here have used. I'm electronically challenged, so can't tell you how to find those threads. However, our groups leaders are pretty amazing at being able to help in that regard.

I don't want you to think I am opposed to surgery, in principle. I just haven't had contact with anyone who recommends it. In addition to the two teens I mentioned, there is another forum member who i have been in contact with for whom surgery was unsuccessful. In each case, these were thoughtful, bright people, who worked with reputable physicians and who were purportedly excellent candidates. I can't say that applies to everyone. I am sure there are those who are happy with their results!

I am glad that you have had a better experience with your patients. I guess it will just take more research for me to be convinced that 24/7 NDPH can be helped by this surgery (versus CDH, perhaps ON or other types of migraines). I really appreciate the time you have taken to respond to me!

: )

My pleasure. I commend your skepticism as I am very conservative on whom I operate. I also agree completely that decompression surgery is certainly not for everyone. In fact it is probably only 10% or so of migraineurs that are candidates. Hope all remains well with you and you find success in your treatment. Let me know if you have questions in the future.

Cheers.

Dr.P.