Kathi,

Thanks for the reply. I do have a herniated disc at C5-6, but the neurosurgeon wants to do a myelogram and nerve studies as he feels the herniation isn't significant enough to explain my symptoms. I thought the neck and head pain was from the disc problem and thats when he said no, that pain was from occipital neuralgia and that if he can't do anything for me, surgically, he intends to send me to his partner/neurologist.

So, here I stay in pain. Ellena

Thanks so much Kathi. I'll try and find out exactly what it is he's going to do. I should probably have asked more questions at the time, but I guess I was a bit dumbfounded

Ellena,

I think everyone is different. So when I post about this horrid stuff, it is just based on my own personal experience. (Geesh, ON is horribly painful!) I feel for anyone that has to endure this and go through so much testing. Okay, what I wanted to say is that the C5/C6 USUALLY refers pain DOWNWARDS; shoulders, arms, and in my case it ONLY hurt in my thumbs. But my MRI showed a bad herniation. I have no clue as to why my arms never hurt because based on the dermatome charts they should have. So, I think people are just wired differently. I once asked my PM if I could still have headaches even though the C3/C4 was fused at that time. He basically said anything going on in the neck can refer pain upwards or downwards. And I am finding that to be true. But...just know too that I have osteophytes everywhere; not all were drilled out or taken care of; just the levels that were fused. So, I can still get those headaches they are just not as bad as they used to be and not as often. But when they do come on, I can now kick them out pretty quick. If not, it is facet injections. I had a bad spell last night as a matter of fact and did everything I could do at 1:00 am to stop it. And it finally went away.

Today I had facet injections at C2/C3 and then at L4/L5 and S1. Not pleasant at all but not horrendous either...just pretty badly inflamed facets. But I will tell you what the ride home was totally painfree! I KNOW it is because of the numbing medicine and it has started to wear off so I suspect there will be an increase in pain for a couple of days or so and then the steroid SHOULD start kicking in. If I get good relief from these, then he will go ahead and do the the Radiofrequency Ablation later on.

Hang in there Ellena; although it might seem like there is not much hope but there is! I went through the conservative bit for 3 years before anything was done. And that was very unusual. It is just that one NS refused to do anything. But my second NS sure did! And I think your doc sounds like he is on the right track. If you can't get any help then the very best recommendation I can make is to find a SPINAL pain management doctor. The one I have now was my saviour! And his background is in Internal Medicine, Anesthesiology. Pain Medicine and CERVICAL PATHOLOGY, meaning headaches coming from the cervical spine. I thank God I found him because there are not that many that have that background. I think I lucked out and only because a friend of mine told me about him 3 years ago or so. And he found the problem in ten seconds flat. Why then I ask myself, didn't the other group of PM's find this OVER THE COURSE OF 3 YEARS?! Ugh, that's another long story and I still get upset when I think about it. Anyway, hang in there...I know ON or Cervicogenic headaches are really difficult to diagnose. But once they are, you are well on your way towards relief of some kind.

Charliebubs,

I can imagine and even relate to feeling dumbfounded. When this all started 8years ago for me I didn't even know WHAT it was or WHY it was happening. Honestly, I thought I was having a stroke when it first happened. And...once I started in trying to find the cause I did NOT know the questions to ask until I started talking to other people going through the same thing. So, don't feel bad. It has taken many years and trials and tribulations and even fusions to get it all taken care of even though I have some residual pain. But I also know ON can be caused by other things...not necessarily the spine. I think that is why sometimes it is difficult for people to get diagnosed. As I said before, they started with trigger points around the greater and lesser occipital nerves. And during that whole time I had some really freaky pains, dizzy spells, nausea...you name it. I just didn't know where it was coming from. Anyway, if you can get the name of the procedure or what it is your doc is planning to do, please post back. The ONLY procedure I NEVER had done was a total destruction of the nerves in the back of the head. My original PM mentioned that procedure in the very beginning. I thought it was a cool idea UNTIL he said that I would never feel the back of my head again. And again, I said, well, so what...it is better than being in pain 24/7! But he said not really...alot of his patients hated the numbness and wished they could feel again. But this procedure he was speaking of was NOT the ablation I was speaking of. I wish I could remember the name of it but I opted out at that time since he had already said I would need a fusion someday. As it turned out, he was right.

Kathi,

Thank you for sharing and I understand that your speaking from your experience. I have a lot going on before all of this and I'm just pretty frustrated, obviously. I also have trigeminal neuralgia and I think I mistook a lot of the ON pain for that for a long time, and the disc issues which I spoke of previously. I was starting to see a connection and then the NS cinched it when he diagnosed it in no time. I'm hanging in here, but the ON pain is escalating quite a bit. So thanks again. I appreciate all the info I can gather at this point.

Ellena

Thanks again Kathi for your help and advice - it is an awful feeling when you have the initial shock and dumbfoundness until someone tells you what's going to happen and it's so nice to speak to others in the same position.

I've spoken to the hospital and the procedure I'm having Monday is BI-LATERAL SUB-OCCIPITAL NERVE ROOT BLOCK

Does that mean anything to you?!?!?!

thanks,
Charlie

Yes Charlie it does.

In particular since he said nerve ROOT block. What it sounds like to me, and being that the suboccipital nerve comes out of the first cervical vertabrae, he is going to go in on either side of your neck (bilateral) and block the nerve root...that would be C1/C2. Don't worry he will NOT go INTO the nerve he will just block it. That just means they get real close and more or less bathe that area and calm those nerves down. And I can understand why he would give you some light anesthesia. You probably will experience some dizziness right after but that is to be expected since that level is high up there. I had something similar done yesterday only it was the facets at C2/C3. And, yep, I was a bit dizzy but it passes.

IF he had said trigger points or nerve blocks around the occipital nerves up and around your scalp, that would have been different. They still use a numbing med and steroid but the injections are in the scalp more or less. That's why I said they palpate the area for those.

Anyway, when you said "Root" then that tells me he is going exactly where it says...to the root of the problem and those particular nerves come out of that upper level and then for lack of a better description wind in and around the muscles of the scalp. Actually, it should work very well! And you should be sedated enough that you won't even care. Hang in there, I know the injections sound awful but the relief you get, and I just mean myself, is great!

Oh, Kathi, you're an angel!

Thank you so much for that detailed explanation. That really makes sense now. I can see why he's doing what he's doing.

It's really reassuring to hear you say that it should work too.........I'm so hoping and praying that it does I'll keep you posted!!

Thanks so much

Charliebubs, I hope all goes well and the nerve blocks work for you.
I'm no good at explaining how they are done, I just know that they work for me!
~Jaime~

Charliebubs,

You are welcome. And I sure hope I am right in what I told you. So again, I was referencing the part where you said nerve ROOT. I am almost positive that is what your doc is intending to. And only because trigger points in the scalp or around the occipital nerves do not require sedation. With other types of blocks sedation is usually available. Anymore, I don't ask for sedation I just take a Valium or two before the injections and just because I am anxious. And I don't always take a Valium every time either. It just depends on how many he is going to do. This past visit there was 5 areas he was injecting so yep, that made me anxious. Next month he will be doing a Selective Nerve Root injection at the C7.

In any case and as Jaime said, they have worked well for her and myself! In some instances they don't help. But from what I gather or have learned rather, if they don't help, that is only because the nerve generator was not found. I have had that happen too...in the beginning of all of this. The docs were injecting every level but for some reason didn't hit on or missed the target for the C3/C4. When my newer and current PM saw my MRI films he told me right off the bat that the C3/C4 was the culprit; did a couple of injections and I can't remember the exact types since it was back in 2003. But I had instant pain relief for the first time in 3 years. Of course it came back and then he did another set. But you have to know the C3/C4 was really, really bad...so fusion it was in 2004. And don't get me wrong, I am not saying you need a fusion LOL! It is very possible all you really need is just to get the nerves calmed down which is what your doctor's objective is.

I will keep my fingers crossed for you. And I bet you find you will get some good relief. Just the numbing agent itself is heavenly! I can't tell you how many times I have had these only to ride home with blessed relief. But the numbing agent wears off after a few hours. You MIGHT have some increased pain for a couple of days but don't fret about that. It is just that the nerves sometimes get mad. But the steroid itself should kick in about a week or so. The doc can explain that all to you. But hang in there and don't fret and don't think it isn't working if this happens. I have done that too...called in to tell them the block didn't work. And how wrong I was LOL! I just needed to give it more time.

I wish you the best and don't fret too much. These are really not that bad at all...especially with some anesthesia. Honestly, you won't really care what they do and I know that sounds odd. But it is the truth.

I had nerve blocks, facet injections, cortisone and lanicane, and it did not work for me. I have had "ON" for 15 years. i am now trying Botox and hoping and praying that my headaches go away. I will let you know how it goes.

Richie