Bad one's lately

[danijake]

I'm getting very discouraged by the length of time these headaches hang around. 5 years ?!!! I don't think I can handle that. I did find out it's my occipital nerve and the way the surgeons twisted my head for 7 1/2 hours! That's what my chiropractor said, anyway.

I just don't think I can handle this long term. I've tried heat and it makes it worse, so I went to ice. It helps, but not for long. I do find golf balls to be effective. Tennis balls just aren't hard enough!

I do know my headaches are cervicogenic cuz I saw the x-rays. Not a pretty thing.

Actually I think--well, I lost it. Those darn "brain cramps"!!!

I don't know what to do. The ENT stands by the "not supposed to have headaches" thing.

Hope all goes well with everyone, including me!!!

[Janet]

Danijake,

Are you sure they can tell where the orgin of the pain is from an X-ray? A fluroscopy guided nerve block could isolate the source of pain if it is done right. It may be coming from the facet joint or higher up on the occiptal nerve. This wouldn't show up in an X-ray. An Xray could suggest it was cerviogenic but if the treatment doesn't work, then you might try to locate the exact source of nerve irritation with a nerve block.  In my case, it was higher up where a blood vessel was piercing through the occipital nerve. Probably from the head frame in surgery rather than the position is my guess. Medication or manipulation would never have cured it. Surgery fixed it.

My experience is that the doctors can only offer you what is within the scope of their expertise and within the limits of their specialty. Trial and error can be challenging on many levels including financial, but don't give up. Somewhere, someone can help you.

Sincere best wishes,
Janet

[leapyrtwins]

Dani -

have you seen anyone other than your ENT and your chiropractor about your headaches?

I realize that everyone is different, but my head was also twisted during 7 1/2 hours of surgery and I have never experienced any headaches.  I'm not a doctor, but this just doesn't seem like a logical explanation to me. 

I don't see any reason why you should have to be dealing with this much pain; someone should be able to do something for you.  IMO you should continue to look for an answer to what is causing your headaches and hopefully that will bring with it some solutions.

Hope things get better soon,

Jan

[Kaybo]

Dani~
I was in surgery 14 hours and never have headaches!

K

[danijake]

I made an appt. w/ my PCP to get a referral to a neurologist. I have HMO medicaid now. All of the chiropractors I've seen said it was from ears of abusing my spine (jumping over fences, falling off bikes etc.) They said the surgery triggered all of it and it will take a year or two to correct it. (years) I don't know if I believe that at this point.

And not to sound like a dummy or anything, but what does IMO stand for?

[ppearl214]

And not to sound like a dummy or anything, but what does IMO stand for?

"IMO" stands for In My Opinion
Phyl

[leapyrtwins]

Dani -

glad to hear you've made an appointment.  Hope this is the start of some relief for you.

Hang in there,

Jan

[Melissa778]

My ENT and Neurologist have told me that my headaches have nothing to do with my AN.  I have headaches DAILY, some are really bad others not so much.  My neurologist has just started giving me occipital nerve blocks to help.....I got my first round in February.....I go again in August AFTER my translab to remove the AN.  SO far they have helped my daily headaches....I dont' get them as frequently and the severeity has lessened.  I still get a doozie every now and again.  But overall it has helped.  The thought of thsoe needles in my head was a little disturbing.....but surprisingly it was fairly painless and has worked well for me.

Best of luck, hope you're feeling better

Melissa

[Janet]

Melissa.

I think your doctors are on the right tract. Maybe your occipital nerve and a blood vessel are close together like mine were. You might want to discuss placement of the headframe during your up coming surgery to aviod pressure on the nerve. I think this is what caused my headache problem, since my headaches became severe after surgery. A blood vessel was found to be piercing through the nerve in a recent occipital nerver release surgery. I know they try to be careful with this, but some people's nerve ananomy is different. I don't want to sound like I am blaming anyone. I just want to make people aware of the possibility.

Janet

[danijake]

My PCP said okay, he'll refer me to a neurologist who takes this ins. It stinks.(the ins.) So did the Dr office!!! Anyway, He said he's heard of bone dust causing headaches. The surgeons try to get it all out, but they sometimes miss some. It can cause problems for a very long time. He said to ask the neurologist when I go. I just want some answers!!!!! 

[Janet]

You might want to be referred to a pain clinic. Remember, a neurologist can only do what is within the scope of their practice. A neurologist can only prescribe medication or refer you to someone else.  In general, they don't carry the type of malpractice insurance to do nerve blocks like the doctors at a pain clinic. IMO, you need a nerve block to determine where the pain is coming from.

My surgeon accounted for all the bone dust as stated in his operating room report. IMO, my headaches were from pressure put on occipital nerve during surgery. 

Janet

[Captain Deb]

Dani--what meds are you on for chronic pain right now?

Capt Deb

[danijake]

I'm on Neurontin 300mg twice a day and then 600mg at night.(If I take 600 during the day, it makes me loopy) Then, ibuprofen 800mg every 4-6 hours and tylenol rapid release 1300mg 4-6 times a day-alternating. THEN, klonopin 1mg 3 times a day for the occipital nerve pain and soma 350 in the AM and at night before I go to bed for the tightness in my neck and muscle spasms caused by the occipital nerve and the messed up bones. That's it and it seems to be working okay. I also see a very caring chiropractor who doesn't take my medicaid, but will work with me on the money thing. I owe him $750 right now. He just wants me to feel better. He knows he'll get paid. I've been giving him whatever I can afford every week.

[Captain Deb]

You should ask your PCP about giving you something to protect your tummy from the ibuprophen or at least take it with OTC Prilosec and definitely with food.  I really ruined mine the first year out by taking too much ibu and now I have a permanent case of acid reflux disease, so watch it carefully.

Hugs,

Capt Deb

[danijake]

Thank you Deb. I will watch it. I started getting a burning sensation with upset stomach last week, so I laid off the ibuprofen and went to tylenol. I tried not to take anything, but the headache just won't stop pounding if I don't take something. Tylenol doesn't work as well, though. Thanks for your concern

hugs back at ya!
Dani