Occipital Neuralgia Symptoms?

[christynic]

Help!!  I've been searching through the Headache forum for a clear list of the most common occipital neuralgia symptoms - is there a list that anyone knows of?  I've been having intense headaches since a few months after my suboccipital surgery in January, and both of the neurologists I've seen say that it must be just migraines.  In addition to the sides, back and top of my head, I'm feeling a lot of pain in my scar area, into my ear and up into my eye and on my face on the surgery side; my doctor says in occipital neuralgia there is no face pain.  Is this true?  I really would love to find a headache doctor in southern California that is experienced with this type of surgery.  It's probably my fault for not having my surgery done at HEI 

[leapyrtwins]

It's probably my fault for not having my surgery done at HEI 

I'm sure this was said tongue in cheek, but it's very important to note that people who have surgery @ HEI have just as many "issues" from surgery as those who don't go there.   And, in addition, many of us who had surgery elsewhere don't have "issues".  HEI is not the be all and end all 

That said, lots of people who have the retrosigmoid (aka suboccipital) approach have headaches post op so, although I'm not a doctor, I have to question the fact that you are being told that your headaches are migraines.

Although I think she had translab, Captain Deb is/was a big headache sufferer.  She has numerous posts on the Forum about her headaches, what remedies she tried, and whether they ultimately worked or not.  If you do an advanced search for Deb's posts related to headaches you may find something helpful.

Good luck,

Jan

[Dee-dee]

I was told that headaches can result from the surgeon leaving dust behind when drilling the skull which form into little granuales over time. Dr. Kalmond Post in NY is a pioneer in this area I believe.

[lrobie]

I agree with Jan.  Even though HEI has highly skilled surgeons, not everyone has surgery there without having issues.  Don't beat yourself up.

Lisa

[christynic]

Thanks Deb's posts have been very helpful, as have others.  I have gone through and captured several lists of symptoms and treatments already, where the symptoms match mine exactly, and put them on paper to bring to my next appointments.  Not only does it help me emotionally to know that someone else has gone through this -and found relief! - but knowing it could help lead to treatment is relief in itself.  I actually cried at the thought of a day without head pain.

My previous neurologist discharged me to pain management with diagnoses of "conversion disorder" after my "migraines" didn't respond to nerve blocks administered once a month with only lidocaine. I'm only putting them in quotations because I'm not sure of their definition.  The blocks helped the pain for a day or two, which gives me some hope for a treatable occipital nerve issue?  I'm not sure whether a block with cortisone would help for longer though.  She (Dr) said cortisone is not shown to be more effective. My pain management doctor was surprised, and surprised that she even referred me.  He said "I'm not a headache specialist."

So Dec 4 - another neurologist. Maybe I just need a different doctor.

[LakeErie]

If your retrosigmoid procedure transected your occipital nerves, headache syndrome may result.
Try Dr Ducic at Georgetown for papers on the subject. This is from his website:


Post Craniotomy Pain & Headache

Click here to view a patient discussion about nerve excision as a treatment for post-craniotomy pain.

As was discussed in the section related to chronic pain following surgery or trauma, any trauma or surgery can result in nerve damage causing chronic pain. When that pain is chronic migraine / headache  it assumes whole new dimension.


Presentation can vary widely, but often involves a form of chronic headache or migraine. If these symptoms are mainly located in one part of the head, like back of the head (occipital area) following acoustic neuroma surgery, then it  can also be defined as occipital neuralgia. These patients often report:

-Chronic headache/migraine symptoms, either intermittent or constant

-Incisional pain at the site of the neck or scalp where previous surgery took place

-Pain that can radiate from neck and back of the head towards the top, even front of the head

-Limited (sometimes no) effect of medical treatment

-Scar or soft tissue depression, especially following acoustic neuroma

-Symptoms starting soon after surgery or in a delayed fashion

-Symptoms present more then 3 months after initial surgery


Surgical Treatment of Chronic Post-Operative Headache

Unlike medical management which is focused on treating symptoms, peripheral nerve surgery treats the  cause of the pain (stump neuroma, damaged peripheral nerve with previous surgery).  The involved nerve and its neuroma are surgically removed.  Considering these nerves control only sensation, there is no motor deficit of any kind following this procedure.  If there is soft tissue depression in patients who had acoustic neuroma surgery, this can be addressed at the same time. Certainly, this all is done after an initial work-up by your neurologist excluding recurrence of acoustic neuroma or other pathology.


During Surgery for Chronic Post-Operative Headache

1. You receive general anesthesia so you won’t feel any pain during the surgery.

2. An incision is made over the involved nerve (occipital for post-acoustic neuroma patients). Damaged nerves are removed and the soft tissue defect is corrected, if present.  Skin is then closed in anatomical layers.

    3.This surgery is an outpatient procedure; your dressing will be removed about 5-7 days after surgery, while sutures are removed three weeks later. And yes, as appreciated by all patients, I designed my surgical approach in such way that no shaving of the head is needed.


If you are not sure about your eligibility for surgery, and if you are not in the Washington, D.C. area, you can send me your records so I can determine if you are a good candidate for treatment. Visit my patient forms page for a downloadable form."

This is just one possibility, but it is worth considering. Good luck.

[mindyandy]

I agree with Jan and Lisa. Don't beat yourself up because you didn't go to HEI. They are great w/AN surgery but you must remember this is a major surgery and outcomes can vary regardless.

[Lesliegc]

I'll add my 2 cents here too....I went to HEI for my surgery, and they did a great job, but my headaches began about 4 months after the surgery, and have continued for a year thus far. I've gotten no good answers as to why. Still searching myself not just for relief, but why this is happening.....I will say that the pain has been corrosive to my emotional and mental health over a long period of time, and it is really important not to retreat from friends and family, even when it is hard, try to stay connected to people. It will help, emotionally, if not physically. Hope you get some answers and some good treatment soon.

[staypoz]

christynic, I am so sorry you are experiencing head pain.  My headaches started about two weeks after my surgery and it took me many tries to find real relief.  What you have probably gleaned from searching through previous posts about post-op headaches, is that there is no one-size-fits all treatment.  Some people have found relief through meds, others through shots, others through surgery, etc.  I found mine by having a nerve stimulator implanted. 

I found it helpful to go to appointments with new docs armed with the ANA booklet on post-op headaches.  Most docs have not treated people like us, or,  if they have, they haven't treated very many.

You will need to be persistent and advocate for yourself. There is relief out there, you just need to find a doc who will work with you to find it. 

staypoz