Recent Occipital Nerve Surgery

[Janet]

Here is an update on my recent surgery.

On April 20, 2009, I had a transection of the lt.lesser occipital nerve and excesion of a left greater occipital neuroma. 

I have to say that I feel  better than ever I hoped for.  Five years ago, my headaches were daily and severe. They dictated every movement I made.  I would say they were on the very upper limits of headache pain. I felt hopeless. It has been a long journey but today I can say that it is in the past.

I take no medications.  No Tylenol, Maxalt, Indomethacin, Botox, nerve blocks, Lidocaine patches, muscle relaxers, Ibuprofen, Excedrine, Aleve, Neurontin or Trileptol. These are all medications I had tried in the past.

I have not had a migraine since this recent surgery.  This is remarkable because I was having migraines 10 years prior to my AN surgery!  I was constantly fighting this pain and taking Maxalt a couple times a week. I still can't believe that this is gone.

I do not have any headaches. I slowly decreased the Tylenol that I was taking to avoid rebound headaches.

My eyes are not as sensitive to light. I always wore polarized sunglasses outside. I find myself outside without sunglasses now and the cheap kind will do. The horrible  behind the eye pain that triggered migraines is gone too.

I am getting more and more active. I still get occasional neck tightness, more likely in the morning. It works itself out and I don't need to take anything for it. This neck tightness used to turn into headaches and the headaches would turn into behind the eye pain or it could be the other way around. This cycle is broken. The neck stiffness doesn't lead to anything.

I have a tender spot on my incision. Unless I touch it, I do not feel it. My glasses can cause it to burn. I goes away when I take my glasses off. A large area on the back of my head is numb.

Best wishes to all of you that suffer with daily headaches,
Janet

[HeadCase2]

Janet,
  This is really great news!
Regards,
  Rob

[Jim Scott]

Janet ~

Your totally positive surgical outcome to relieve your migraine headaches is nothing short of incredible - but happily, true!  Congratulations! 

Jim

[yardtick]

This is wonderful news Janet.  I've been following this thread very closely.  It is so nice to know a fellow headache suffer is finally pain free.  Five more months before I see a Pain Doctor at the Pain Clinic.  One would think I was counting down     Actually I'm worried about my poor liver    It has taken a beating!

Anne Marie

[GeorgiaMei]

Congratulations Janet.   I am so happy to hear you are doing well and had such great outcomes.  I am seriously considering this procedure and it sounds like you would probably recommend it. Any words of advice or downsides that you've seen so far.  Our livers sure do take a beating, huh?       
Karen

[Janet]

Thanks Everyone.

Karen, 

As far as the surgery goes. It isn't one surgery fixes all. First, you have to know where the problem is. He does different things to fix different problems. There are different reasons why peripheral nerves are irritated. It might not have anything to do with the occipital nerve. I think it is possible that mine was caused by the head frame used in surgery on my already too close artery and occiipital nerve that was causing migraines for years prior. Who knows?? It could be a scar neuroma from the AN surgery on a different nerve that has nothing to do with migraines. I had this too. The first surgery I had was different from the second surgery.

Here is a government (NIH) website that is a clearing house for medical research. You will find 55 abstracts of Dr Ducic's research papers.

Do a Google Search > Pubmed
Search>  Ducic I

Read, Indications and outcomes for surgical treatment of patients with chronic migraine headaches cause by occipital neuralgia 

On the right side of the screen, find related articles. You will see a wealth of information here related to occipital headaches and various treatments.

What are the downsides? 
Outcomes are variable. I figured I had nothing to lose and set my expectations low.  I was not disappointed.
Finding a doctor. Personally, I wouldn't consider anyone else. This required trips from Seattle to DC. With frequent flyer miles, good insurance and a good friend in DC, it cost me very little.
Regular surgical discomfort.
You still need to deal with weaning yourself off of medication. I slowly stopped Tylenol over a month and didn't notice any rebound. (2000 mg to 1000 mg to 650mg to 325 mg to 160 to 0/day)

As far as recommending surgery. I would do it again, absolutely. I would recommend reading as much legit info you can (Pubmed). Try to get a doctor to establish where your pain is coming from.  Have Dr Ducic review your medical information. Then do your own Risk vs Benifit assessment on each alternative way of dealing with your headaches including nerve stimulators, medication and doing nothing.  Mine ultimately came down to damaging my liver with long term medication use, a distaste for medication that altered my personality/energy, not enough literature on nerve stimulators, knowing that I could still try other approches after surgery if it didn't work, and a little faith.

You have to be the driver and it takes work.

Janet

[GeorgiaMei]

Thanks very much Janet.  You are a well of information!!  It definitely takes a lot to make all of these treatment decisions--I will certainly look at Dr. Dudic's work.  And although we are all different in how we respond, it's nice to hear from other people who are going through the same process.  I have seen several pain specialists who have confirmed that I am having daily migraines due to the over-firing of my right occipital nerve.  I have had an occipital nerve block and plan to have another block placed at the scar site from my AN surgery on Tuesday, and possibly Botox treatments to the nerve after that.  Ablation isn't my first choice, but I can't live w/ such severe pain everyday, narcotics, sedation, side effects, etc.. 

Did you have someone tell you why your occipital nerve was agitated?  It seems fairly common for post-translab AN'ers and it seems worse in those of us who suffered migraines pre-surgery.   

Thanks again for sharing your experience and resources!  Congratulations on feeling better! 

Karen

[moe]

Hi Janet,
I read some of your old posts. You have been through a lot and have a great wealth of info for those headache sufferers.
So glad your surgery was a success.
I sent you a PM>
I live in Tacoma area.
Maureen

[Janet]

Maureen, I just sent you a PM.

Karen,  Yes, I did have an occipital nerve that was firing everytime I moved a certain way, sat up too quickly, bent over, sneezed ect. (I slept sitting up for 4 years.) The first occipital nerve surgery, showed that the artery was piercing through the nerve. This was on the opposite side of my AN. (That is why I think the headframe used during surgery caused the problem.)  Dr Ducic seperated the nerve and the artery. He also fixed 2 scar neuromas on the AN side that were firing but not nearly as bad.

I still had some nerve firing after the surgery, but not as bad. The 2nd surgery he cut the nerve and attached the nerve ending in a way that it wouldn't cause problems. This not only fixed the occipital nerve firing but my migraines as well. (I don't think they were ever true migraines.)

Note: I did not have the occipital nerve ablated. This is a different than what I had done. I wouldn't have felt comfortable with an ablation.

Janet