Post Occipital Nerve Surgery

[pattycake]

Janet,  I add my best wishes for your rapid recovery from "our pain".  And I THANK YOU for finding Dr. Ducic with his novel approach to resolving the pain.  I am fascinated with his approach, and I hope it really works for you.  My trigger points are exactly where his surgery happens - I know it is right on that nerve!  I am also going to Joe's Dr. Feel Good, working with the drug route.  And I hope to start a year of Botox within a few weeks - waiting on results of the Insurance battle.  This site is so great, because I get reenforcement - knowing that I am living in pain with fellow sufferers.  It takes me past the moments when I wonder if I am a Hypochondriac.   But I am also hopeful that the drugs will help me resolve the pain.  I'm not looking forward to surgery any time soon.

Janet:  All my best to you in your recovery.  I will watch for your future posts and hope for excellent progress.

Joe:  Take care of yourself and your babies.  I so relate to the comment regarding 'helping your kids while in Misery'. Pain & Fear of more pain keeps me from doing lots of things.  A Quiet lifestyle helps me stay pain free, but it also gets lonely.  Summer is coming, I would love to be able to go enjoy it with my grandkids!

My prayers & good thoughts go to you all.  Thank you for your courage & hope.  Wishing everyone better health tomorrow.

[Joe Meehan]

Pattycake you are not alone. This site has helped so many and will continue to do so. I'll compare notes on Dr Feel Good. So far no dramatic improvement but slight improvement........as I sit here w/an ice pack on the top of my head wrapped with an ace bandage and a wrap around my neck. I scare the kids sometime. Learning to med up at the first signs of trouble and I just managed to stay ahead of it tonight. Usually I'd wait until 11pm to take my nightly meds but I took them an hour early. I'm learning. I used to wait too long trying to wait until 11 I'd end up in a complete meltdown.

W/all the meds I'm taking I really don't know if this Lyrica is working. I feel like I'm just managing it better. I know mine is definitely worse at night and I'm just staying ahead of it all. I'll give it time. The Botox was awesome. Took my daily spasms right away and Harvard Pilgrim did cover it as well as the Lyrica. They should for what I pay them. I hope you win your battle with your insurance company. Medicare is paying for it so most should.

Got your emails I'll reply shortly. JOe

[MAlegant]

Hi Janet,
Can you tell me more about your surgery? I have nerve pain all the time and though I can hardly imagine more surgery I'd like to understand my options.  So glad it helped you.  BTW, I was on Cymbalta for about 3 weeks, didn't work, now I'm on Lyrica and the jury is still out on whether it will help.
Best,
Marci

[Janet]

Hi Marci,

Has anyone been able to tell you which nerve your pain is coming from and give you an explaination why they think it is that nerve? I noticed you had a trigeminal neuroma. If your pain is coming from your trigeminal nerve and is considered trigeminal neuralgia that is very different. The surgery I had would not fix that. My pain was coming from irritated nerves that are between the skin and the skull. Sometime these nerves can get trapped in the scar from craniotomies. Nerves are located in particular areas and pass through muscle and near arteries that can irritated them as well. This irritation can set off a series of complicated physiological responses which cause severe headaches that resemble electrical shocks, tension headaches and migraine-like pain, especially behind the eyes. There are also true migraines which can have similar symptoms but are not helped from this surgery.

If the source of the pain can be identified, the surgery simply aims to correct the problem. How the problem is corrected depends on what the problem is. Scar neuromas tend to be a common complication of AN surgery. It is just removing the neuroma and fixing the nerve ending in a spot that won't cause future problems.  Sometimes the occipital nerves are the culprit and the source of irritation is addressed. This is not just a post AN problem.  It is outpatient. The biggest problem is finding a surgeon that is specialized, experienced and qualified.

Janet

[Syl]

Janet:

Great news that you had surgery to address the headaches. I hope this surgery helps put an end to the headaches and that you no longer have the need to take meds.

Your photos are beautiful. Thanks for sharing.

Syl

[MAlegant]

Janet,
Thanks for the excellent explanation.  My problem is that the trigeminal nerve was damaged when they removed the tumor.  It was fairly large and at least one branch of the nerve had to be cut.  The question at this point is whether it will improve over time or whether I'll have to live with the pain forever.  I can handle the numbness if it's permanent, but the pain can be pretty bad.  Hoping that the newest drug (Lyrica) will help.  I can't yet tell.  So, yes, a completely different issue than yours and likely one not surgically resolvable, alas.
Marci

[Janet]

Marci,

Try Googling

1) trigeminal neuralgia
2) occiptial neuralgia

Which neuralgia best describes your symptoms?  It is possible to have both or either since you have had both a crainiotomy and  trigeminal nerve surgery. 

You might want to check out, The Skull Base Institute.  They treat trigeminal neuralgia surgically. They also treat skull base tumors. They review cases for treatment of trigeminal neuralgia, if you send them your records.  Might be a cheap way to get a 2nd opinion.

Hopefully, the Lyrica will kick in soon and you will get some relief!

Janet

[Joe Meehan]

Love this International Headache Society web site. I looked up both Trigeminal and Occipital Neuralgia and it seems I have neither. No stabbing pain anywhere. Mine is gradual like the slow tightening of a vise.