Just What is Occipital Neuralgia??

Occipital Neuralgia
What is occipital neuralgia?

Most of the feeling in the back and top of the head is transmitted to the brain by the two greater occipital nerves. There is one nerve on each side of the head. Emerging from between bones of the spine in the upper neck, the two occipital nerves make their way through muscles at the back of the head and into the scalp. They sometimes reach nearly as far forward as the forehead, but do not cover the face or the area near the ears; other nerves supply these regions.

Irritation of one of these nerves anywhere along their course can cause a shooting, zapping, electric, or tingling pain very similar to that of trigeminal neuralgia, only with symptoms located on one side of the scalp rather than in the face. Sometimes the pain can also seem to shoot forward (“radiate”) toward one eye. In some patients the scalp becomes extremely sensitive to even the lightest touch, making washing the hair or lying on a pillow nearly impossible. In other patients there may be numbness in the affected area. The region where the nerves enter the scalp may be extremely tender.

What causes occipital neuralgia?

Occipital neuralgia may occur spontaneously, or as the result of a pinched nerve root in the neck (from arthritis, for example), or as the result of prior injury or surgery to the scalp or skull. Sometimes “tight” muscles at the back of the head can entrap the nerves.

How is occipital neuralgia diagnosed?

Occipital neuralgia can be diagnosed—and temporarily treated—by an occipital nerve block. For patients who do well with this temporary “deadening” of the nerve, a more permanent procedure may be a good option. These treatments include cutting the nerve surgically, “burning” the nerve with a radio-wave probe, or eliminating the nerve with a small dose of an injected toxin.

Obviously any procedure that deadens the nerve permanently is likely to leave some degree of permanent numbness in the scalp. A few patients may do well with procedures that “spare” the affected occipital nerve—a surgeon could decompress the nerve by removing any impinging muscles or scar tissue, or a pain specialist could implant an occipital nerve stimulator, a pacemaker-like device that stimulates the nerve with electricity resulting in tingling rather than pain.

Because all of these procedures are invasive, carrying some degree of risk of permanent complication, they generally first try to use medications to “calm down” the over-active nerves. Some patients respond quite nicely to non-invasive therapy.

[Information source - Johns Hopkins Medicine]

I wanted to share this article with you because this is exactly what I have been dealing with since my last surgery on September 24, 2014. I have been trying to explain it to my doctors but I don't believe they realize how strong it is. I would seriously consider having the procedure done where they "burn" the nerves so they no longer "feel". I can't imagine living like this forever. It is restrictive and medication does not work ; I have tried several different muscle relaxers, narcotic pain relievers, and even Topamax (for migraines, seizures, nerves ...) it has increasingly gotten worse. It began on the right side and has made its way to the left side. Washing my hair, touching my head, it radiates down the sides of my head and face, laying down, windy days, brushing my hair, and so many other surprising things that occur on a normal everyday basis, set these cranial nerves off, and it is PAINFUL. My last surgery was a double decompression, syringomyelia and Chiari malformation: Laminectomies on C1, C2, C3, subarachnoid shunt at C3 ( I also have a shunt at C5, which is now cadaver bone and is fused to C6, which has had a laminectomy, as well as C4), then finally, to decompress the Chiari, a partial occipitalectomy. I was told how painful this would be, but also how necessary it was. I went in mentally prepared. I had had bone removed before and knew that recovery was not easy. Patience was key.

Isn't patience the key to most anything in life? If it is worth having, worth doing, worth the reward ...then it is worth the wait. The struggle. The fight. The tears.
Anyone who really knows me, knows that I don't always wear my patience on my sleeve ...sometimes, it is tucked away (for safety). 

Knowing that things could always be worse, I am thankful that my body has not completely caved in to being outnumbered by illnesses. I still have choices and will continue to fight for them. That being said, I have lost a few battles, nothing that makes me feel shame or humiliation for my situation. I am still proud of the things that I can do; that is how you have to look at things. Think about (maybe make a list) of all the things that you are able to do, nothing is too small. Those are the things you focus on, the things you find pride in, and boast about!

I'll continue to talk to my doctors about my overactive cranial nerves until one of them decides that it is time to do something. Being that it hasn't been quite a year since my last surgery, and it had only been a few months since the decompression surgery before, my neurosurgeon wants me to have more healing time. I can understand that. But only for a while longer.

***Take care of yourselves and each other. Keep a list of your medications and dosages with you at all times as well as drug allergies & dr's phone numbers, write down your symptoms as they happen to take to the dr, and any changes that you notice. You never know what the smallest detail can uncover!***

I wish you plenty …of love, understanding, support, spoons, and dreams come true! 

Monica Reents