Questions after root nerve blocks...
 

Hiya,

Well, I had the bilateral suboccipital root nerve blocks last Monday (June 30) under general anaesthetic and also with local anaestheic in the back of my head.

I was kind of hoping that I would feel relief as soon as I woke up from the GA, but I didn't.........wishful thinking I guess! :rolleyes:

The orthopedic surgeon told me that everyone is different and that some people do feel the benefit straight away and for others it can take a while for the steroids to kick in. He also warned me that for some people it never works at all. He has said that if it hasn't worked for me this time, he'll do it again. I've got to go back and see him the first week of August.

So, I'm wondering what others have experienced when you had the nerve blocks? Immediate relief?

I felt generally quite sore and stiff for a couple of days after, but that has worn off now and, although I feel different, the ache/pain is still there. I can't explain how it feels different, other than my head feels a bit too heavy for my neck.....if that makes sense.

I'm hoping that the steroids will start to take effect soon, but I have no idea how long that can take? or do I just assume that it hasn't worked for me!?!???!

I'm so confused........any help welcomed!! :)

Charliebubs,

Your doc is correct. You need to at least give it two maybe even three weeks. I would get immediate relief from the numbing medication and THEN had to wait to see if they worked. At times I even called saying they didn't work only to have it finally kick in. So, just give it some more time. And again, the doc is right...sometimes they don't work and a person does need another set. So, just hang in there. :) And just speaking of myself, when they didn't work, it was because they just didn't find the right pain generator. I know it is frustrating but with ON it can take awhile just through trial error.

Thanks again, Kathi, for your help.

I was starting to worry that the blocks hadn't worked and these headaches are really getting me down. :(

I was so pleased when I finally got diagnosed with ON, as I'd been having headaches for months without any explaination and the physio wasn't helping. I guess I just thought that once I had been diagnosed and treated it would all go away :rolleyes:

I'm sick of headaches now and I think my friends and family are sick of me talking about having headaches. Everyone's losing sympathy as they don't understand how much it can hurt. It's frustrating :(

Charliebubs,

Oh boy, I can relate to family and friends since my own ON or rather cervicogenic headaches (same difference to me) lasted 3 years 24/7! It was a LONG HAUL! But what your friends and family need to realize is that headaches are invisble except for the kind that MIGHT show up on some kind of scan. Everyone ALWAYS thought I had migraines. I would try to tell them, no, I KNOW what a migraine feels like and these aren't it! :eek::) Actually, I had both going on..the two types. Anyway, it will just take some time educating them. Just print off some literature about ON or Cervicogenic headaches and give it to them. That's what I did and they eventually got the picture. ;) I also had my mother and at times my husband go with me since I would need a driver for any injections in the neck. And thank goodness the PM's told them that this kind of pain is severe and debilitating. I also had people tell me there is no way it could rate a 10 on the pain scale. Uh, uh, I beg to differ! Sooo...I asked my PM (since he specializes in this) what levels do his other patients rate this kind of pain. And he said by the time they reach him for treatment they are at a 9+ but that it will FEEL like a 10. And he knows this because he has it himself...plus has had two fusions. So, he can and does definitely relate to what we go through.

Anyway, no, ON can take a LONG time to diagnose and I think it is because they have to find precisely where the pain generator is. And in my case, I think the reason it lasted so long is because the first NS I saw said I had to have neurological deficits in my arms before they would do any surgery. I TRIED to tell him it was all up the back of my head. Fast forward to my second NS and he was the one that was aghast...said surgery immediately and pointed out just how bad that level was.

Hang in there and give it more time and just know there is usually an increase in pain before it kicks in. If they don't work, you can try it again or maybe your doctor will have to look further. I am just relaying my own experience since it was coming from the C3/C4 and at times C2/C3 (facets).

Oh, I LOVE this forum! It's so nice to speak to others going through the same thing and who understand how I feel.

Kathi you have been so wonderful and given some great advice - thank you sooooo much :grouphug:

I think printing off info and giving it to my friends and family - and also my work colleagues too - is a great idea. I don't think they have any idea sometimes how much pain I'm in and can be really dismissive of a "headache" or "whiplash" as my injury was caused by a car accident.

I must admit that the pain seems different since having the nerve root blocks, but it's still there. It seems to have moved (if that's possible) and I'm getting more pain behind my ears now and further over the top of my head - whereas before it was really all in the occiput. :(

I'm hoping so much that the steroids will take effect soon and work for me. I've got everything crossed!!!

Thanks again Kathi for all your help, support and kind words.

Have you thought of this?
 

After my last car accident I was completely debilitated for three years with pain that people do not understand. I then found a professor who was pioneering radio frequency neurotomy and that was the godsend for me. No more headaches and no more electric bolts flying down my arm making me feel like a super hero. I was told it would last 2-3 years and here it is 8 years later with minimum pain. Back working and studying. If I go ballroom dancing or swimming I have to modify and adapt to the conditions as I refuse to take strong medication now. BUT I have my life back. Still pace myself as I have spinal injuries but to be able to live without the headaches is wonderful.
I don't know who does this procedure in the US but in Australia it is Prof. Nick Bodjuke. I have spelt it wrong but phonetically it is correct. Hope this helps. Bye, Marci. :)

Marci,

RF's are great! I had one done in my lumbar and will PROBABLY be getting another one shortly. I have never had them done in the cervical spine although I know of people who have. The ONLY reason I opted out is because the doc told me then and there I would need a fusion and that is what I went with. And I HOPE you are talking about the "medial branch nerves" that lie across the facets. Otherwise, the docs would NEVER ablate a motor nerve. :eek::) But you are right; over the years it seems that any and all injections I get help me to keep the ONE pain med I take to a bare minimum. Sometimes people think I am nuts for preferring injections to meds. But besides being hypersensitive to most meds, I also refuse to take the "big guns". Been there and done that and was sicker than a dog. I just don't want to ever revisit that time period again. The meds just did NOT touch that ON pain. But the injections did! My PM explained it to me once...the bottom line is...oral medications just do not get to the source; the injections target a specific nerve and that's what really gives me relief. Anyway, of course I needed two fusions over this 8 year journey. But I still go to my PM every now and then for injections.

Charliebubs,

I will keep my fingers crossed too. But the over the ear pain is CLASSIC with ON. I had it all the time...they termed it "ram's horn pattern" and that is precisely what it felt like besides a vise like grip across my entire scalp. It is possible the nerves are really ticked off by the injections OR the doc MIGHT have to try another level. I say that because the C3/C4 was my bad boy yet the C2/C3 facets are arthritic and so is just about every level in my cervical spine. So, sometimes it is trial and error just trying to find exactly where it is coming from. I will keep my fingers crossed for you. Honestly, if 3 weeks go by and you have no relief, call the doc back and let him know. Oh, and it wouldn't hurt to keep a pain diary. I have been doing that since my last set of injections so I can tell him precisely how I felt each day...sometimes I forget to write it down. :rolleyes:

Now you guys have reminded me lol, I need to call my own PM today. He was going to do a nerve block at C7 since it was affecting my index and middle fingers so bad. But, for whatever the reason, they are better. So, I want to schedule an RF for the lumbar and need to find out if I can go ahead and do that since the facet injections (2 sets) are proof postive I NEED that RF! :)

Hiya,

Thanks again for the advice Kathi. I think keeping a pain diary is a great idea!!

Well, I've been for physiotherapy this morning and have been reassured again by the therapist that it's normal not to feel any relief yet and that hopefully in another week or so I will.

During the session he also noticed that I have a lot of tension and stiffness around C5 and C6 and also T1, which he tried to remove. He said that the stiffness down there is probably not helping matters as the pain could be being transferred up to my occiput and C1 and C2 - where I feel it most.

I'm feeling a bit battered after the session with him :rolleyes: but hopefully will start to feel what he's done later on!! :D

charliebubs,

See! :) Just kidding...it does take awhile. And I am still keeping my fingers crossed. I should tell you too that my C5/C6 was ALSO referring pain upwards even though the majority of the pain went into my thumbs. In any case, I would still get headaches until I had that dude fused too. But that level was definitely herniated. Anyway, I asked my PM about it once and he said ANYTHING going on in the cervical spine can refer pain up or down.

And be careful with physiotherapy! I am NOT saying it is bad or worthless...just be careful! Just don't let them try to manipulate anything. I have been warned about that time and time again. However, LIGHT massage therapy is what really helped. But check this out. Last summer my NS wanted me to go into PT because my shoulders were weak and that sort of thing. I told the PT NOT to do any releases around the occiput. But before I could say stop she did it anyway! I was soooo mad! Well, then that led to a flare at the C2/C3 that lasted for a LONG time and I ended up getting injections to calm those nerves down. So, just go very easy. Another thing my PM told is NOT to let them pull on my arms; stretches and things of that nature are fine....but no manipulations and no tugging or pulling. But then again, the PT I had was VERY YOUNG. I am not so sure she knew how to deal with spinal or ON patients very well. :rolleyes::)

Ugh, I am rambling...all I am really saying is go easy so that you don't have any worsening. And I will continue to keep my fingers crossed for you. :)

I posted, then forgot this forum was even here. ooops:o

I did have my nerve blocks done for the ON, I have had these before and they did offer immediate relief from the numbing agent, and then the meds would kick in within the next couple of days.

But, this last one :eek: I had a new doctor.... all I can say is I will never have another one. I had not only the ON, but it triggered my TN severly, and I had an ungodly pressure that lasted well into the night. About 6 hours of hell....yikes never again.

When things calm down on the home front, I might look into having the stimulator implant.

I hope you are all finding some relief :hug: Nikki

I haven't looked in here for a while either. My ON pain is flaring again. I'm waiting to have my next nerve block, but have to wait until the end of the month! I've had mine done by the same Doctor each time(my neurologist) and he has been as gentle as he can be, but it still hurts! But I'll put up with it, when I know it works for me. But the last time I had the block, he used a different anaesthetic and it only lasted 2 hours. But once the steroid kicked in 2-3 days later, I finally got good pain relief!
:o
~Jaime~

Hi guys :)

Well, I'm pleased to say that the blocks and steroids seem to have now taken effect - woo hoo!!! It took a while and it did seem to get worse before it got better, but I am definitely getting some relief now. In fact I would say that I'm 97% better :D

I no longer have the constant pressure and headache, but I do still get the occassional twinge in the back of my head and also a funny pins and needles sensation. But on the whole I'm feeling soooooo much better :cool:

I'm back to see the orthopedic surgeon on 1 August for a follow up consultation and I think he's going to give me a prognosis for the long term. I have no idea whether I'll have to have this again, but I guess I may.

Thanks again for all the support on here - I'll let you know how I get on.

Charlie
:hug:

That's great news!

I was sooo hoping they would work. And, yes, it is normal to have an increase in pain before the steroids kick in. You might have to have them done periodically but it sure beats surgery and a ton of meds! And sometimes you can get months of relief...it just depends. Now, just go easy and try not to lift anything too heavy. :)

Thanks Kathi :D

Just a quick update.........
The nerve root blocks worked for me for a few weeks and then gradually the pain came back. Admittedly the pain wasn't as bad when it came back, and was more of an aching, tingling, pressure feeling.........but it was back :(
I called the orthopedic surgeon's office, as he had asked me to if the pain returned (even if it was only 20-30% of the pain I'd had the first time round) and they got me back in 3 days later to do the nerve root blocks again.
So, that was Monday - I went back in, had them done under sedation and am feeling okay so far. He seems to have done them slightly lower than last time, the back of my head is sore, but I do seem to feel better already.
Fingers crossed that once the soreness and stiffness goes I'll be all healed and that they will last longer than 6 weeks this time!!!!!!!!! :)

I'm hopeful for you. Even if they have to do it every couple of months, it beats this living with this pain. Take care and keep posting!

Ellena

Hi Nik-key,
My husband is waiting to have a stimulator implant. That's pretty much our last hope. He's had the nerve severed and once you do that most treatments won't work anymore. Anyway,if you're interested in checking out the implant there is a video on You Tube of a fellow who had it done. It shows pretty well how it works,the surgery and the outcome of this guy. I went to Google,typed in occipital neuralgia support groups. The guys name is Bobby Sharp(I think). You'll find it on the first page under his name.