Update
 

Hi all,
Well, I haven't been around much lately, for various reasons.
Right now, my O.N. is flaring again, and I'm just waiting (3 week wait to see my neurologist!) to get another nerve block.
A few weeks ago, I woke up with pain shooting down my left arm. It seems I have a trapped nerve in my left arm. Went to my Dr. and he gave me these strong steroid anti-inflammatory meds, it relieved the nerve pain a bit, but made me so sick and gave me headaches...just what I didn't need! After I finished the week's course of meds, the headaches continued...looked like the O.N. was flaring again. I asked my Dr. if the steroid meds may have interfered with the steroid in the nerve block...he just laughed and said he didn't think so. Well, I know it was a strange question, but I thought it might be possible! lol
I'm still waiting to have a CT Scan of my cervical spine to see what's going on, but have had to wait 3 weeks for the scan!
Meanwhile...after some meds, massage and acupuncture, the nerve pain in my left arm is easing slowly...it's mainly just numb now!
Looks like my body is falling apart a bit more!:o lol
~Jaime~

Well, I'm glad you're back, but sorry that you're suffering. My ON is flaring big time. Its been about a month since the last block and I've got a little less than 2 weeks before I have the RFA done to the cervical vertebra and a repeat ON block cause everytime he goes through the muscle, the ON flares off the charts. I'm amazed that it can get worse than it is, but it does. My MRI and myelogram showed a bulging disc at C5&6. I also have a shoulder issue and I'm not clear on whats aggravating the occipital nerve, as the main muscles that run from the shoulder to the head stay in a state of spasm and inflamed.

I do hope they give you some answers and that your arm pain eases up. Hopefully, you won't have to wait long to get the results of your CT scan.

Hang in there, ellena

Well, I had my CT Scan on Tuesday, and got the results today. I have 3 bulging discs, and osteo-arthritis at every level! It's not too bad yet, no ruptured discs, thankfully!
At least it explains the neck pain...
Just waiting now to have my ON nerve block, less than 2 weeks to go...
:o

I'm so sorry that you also have bulging discs and osteoarthritis. Pain accompanies bulging discs and you should get a copy of the report and the scan for your pain doctor to look at. There are things he can do for you to ease the pain.

Take care, ellena :hug:

Jaime,
Are you having a facet type block or a standard nerve block with needles in back of neck? I am curious as I am trying to figure out how many people with ON are getting multiple nerve blocks or multiple facet injections and which are more sucessfuland for how long as I am new to this debilitation. Thanks for any input

Hi,
I haven't had the multiple facet injections, I've only had the standard nerve block, into the back of the head, so far. My next one is in 2 days time...can't wait!:o lol

WoW! THREE weeks?!? That's a long time to wait! I talked to my pain specialist about eing in pain when the freezing wore off and she told me to call any time I was in pain and tell the recptionist to just fit me in no matter what. She was as good as her word and I was able to do that more than once. She also gave me hydromorphone to take in between times if I needed it. It's helping to take the edge off. I see her weekly for freezing.

TOmorrow I am having a rhyzotomy and maybe that will help some. Have you had that at all? I am not looking forward to it (it's gonna hurt!) but maybe it will help.

I do hope you can get in sooner. Maybe ask about the cancellation list?
Sending sympathy!

I've had both, facet injections and direct blocks, and now the direct occipital block is a necessity when I get the facet blocks. The repeated steroid injections have helped to calm the ON down, but it's returning and they can only do three with steroids, so the last one will get done when the doctor does the rhizotomy. He is hoping that it will free up the muscles which are aggravating the occipital nerve as both the greater and lesser occipital nerves pass through the muscles of the neck and the vertebra. And if it doesn't, he's willing to burn the occipital nerve, but I haven't made my mind up about that one yet.

Hope the nerve block went well for you Jaime.

Thinking of you. :)

Had my nerve block yesterday. It was nice not to feel any head pain for a few hours, but after he pressed on my neck in different places and my shoulders, and did these tests on my left arm, to test sensitivity and if I have any weakness in the arm and not just the nerve pain...it has mostly come good, thankfully. Today it all aches! lol
I've had 5 blocks now, and I've been lucky that they haven't cost me anything, but from now on I have to pay...I'm just glad I don't need them so often! lol
:o
~Jaime~

nerve blocks
 

glad the blocks are helping you jaime, do you have facial pain?
i`m having my 15th nerve block in the morning, they certainly help the back of my head. but i have this awful trigeminiel pain in my face the nerve blocks don`t touch this. I am on so many drugs don`t think they can give me any more. how do you feel after for 24 hrs after your block & how long does your head remain numb[ excuse the pun]
love sophia:grouphug:

So far, the block is helping. I don't have facial pain as in TN, but I do have some jaw pain. But I did have some dental work done last week, that took a while, and my jaw is still hurting from that.
With the nerve block, I feel numbness for 2-3 hours, then pain for the next 2 nights, when the numbness wears off, but the steroids usually kick in by the 3rd-4th day, after the 5th day, I usually feel good, with very little pain. My Neurologist believes my neuralgia may eventually go away, as it has lessened a bit over the last 2 years. But, it has always done that...it comes, then goes, then comes again! I'd like to believe him, but I don't think so! lol
:o
~Jaime~

SO glad you are feeling better. THose nerve blocks certainly help, don't they? I had surgery 2 weeks ago now and it looks like it didn't work at all. I ended up having to see my GP on Friday last week because I was in so much pain I was crying and feeling really queasy. I could not get in to see my pain specialist-she was way over booked, so I was screwed.

My GP is great and while she didn't quite know what to do for me, she decided the best she could come up with was to put me on a high dose of oral steroids (prednisone) for 5 days and see if that made some of the swelling around the nerves go down and help the pain some. It seems to have, though I still have the ON headache going on. I am still taking hydromorphone and then sleeping pills because the steroids make me wired.

Supposed to see the pain specialist on Thursday and I imagine get another nerve block. I will probably be back to once a week injections again. Whoopie!

Where's our magic wands when we need them eh?

Anyway, sending you lots of understanding about how cruddy this is to deal with and again, so glad youw ere able to get your shot again.

Well, I had been 5 weeks pain free...then 2 days before christmas, I had this throbbing pain in the upper neck and the area where the block was done. I'm not sure if it is just nerve pain, only because it has never come on so quickly before, usually the block wears off gradually and the pain returns gradually...I think it is mostly muscle spasms in the neck! I still have this pain now, nearly 2 weeks later! Sitting here with my new laptop just makes it worse! lol Looks like it will be a trip to the Doctor soon...hopefully he's there next week!
:o

Jaime,

I am sorry to hear you are still having pain.

I want to ask you. What levels did the CT scan show the OA at it worst? I know you said OA is at every level. That tells me that it is probably facets and/or foraminal narrowing maybe Stenosis? And was the injection a trigger point injection so to speak? And do you have a copy of your CT report? I would try, if warranted, the facet injections based on what you have said. And I know those muscle spasms can be bad! :eek: Case in point...last spring it was everything I could do to get the spasms to stop and the sternocleidomastoid muscles were involved. I insisted my PM try trigger point injections at first. But at the time he said it was more than likely the facets. He went ahead and did the trigger points but the relief didn't last long at all. Dummy me! :rolleyes: I was back in his office in no time flat and he went ahead and did the C2/C3 level. Well, he was right...I have had relief now for many months.

Over the years he has said many things but one thing he always told me and based on the way my neck is, that the pain would always come back and it did. The other thing was (and he has two fusions; myself as well) that he could never believe how those spasms just come on out of the blue. He now understands because it happens to him. And he kind of laughed at the time...said he has preached for years to stretch. Well, now he knows that sometimes stretching just doesn't get it. In any case, the way it was explained to me is that when the nerves are acting up, the muscles will spasm.

I hope you can get back in to the doc and get some relief. And watch the laptop. I know they are great for sitting and making life a bit easier. But if your head is in a forward posture or you are looking down, it can reallly aggravate things. And no offense intended at all. I talk to many spinal disorders folks who use nothing but laptops. I think I am the only one that uses a desktop instead. But unless my screen is right in front of me (ergonomically correct in other words) and my arms are resting, then I can't use a PC at all. A soft collar might help too. I put mine on when I feel spasms come on and it does help a bit; not a cure all...but reminds me in a way to keep my posture where it should be.

Kathi,
I'm so glad you posted your experience. The muscle spasms I had came out of the blue while I was asleep and they were associated with the bulging disc I have at C5-6. I totally understand what you say about no amount of stretching helps as I stretched plenty before, and tried to after, without any success. Anyway, your description just validated my experience. :hug: ellena

Hi Kathi,

Yes, I have a copy of my CT report, and I showed it to my Neurologist last time I saw him. All he said was... "It's not bad really, I've seen worse spines than yours, and as recently as this morning"!
The summary of the report said..."Minor disc bulges are as described, without significant canal stenosis or foraminal narrowing".
I don't think it's too bad, either, there are a lot worse than me out there! The only injections I've had are for the occipital nerves, never had any facet joint injections. I just have pain down one side, and my neck muscles are always tight. I usually get massage therapy every 2 weeks, which usually relieves the tension and pain, but my massage therapist is away at the moment, and I can't get to see him until late next week. I've often had muscle tightness and spasms in the neck, but they usually only last a day or 2. Bu this has lasted nearly 2 weeks!
As for the laptop, I never have it on my lap (no room on my lap anyway! lol) I use it on a small ajustable table, but can't quite get it as high as I'd like, so it's sitting on a book as well now! lol I still use my old desktop PC, (I'm using it now!). But I wanted something portable so I don't have to be stuck in this small stuffy room all the time! I used the laptop over christmas, as I had my brother sleeping in the room where my PC is! Anyway, I'll work it all out eventually! lol I'm limiting my time on any computer right now...gotta get a life! lol
:D
~Jaime~

OK, I'm off to my neurologist next week. I'm just supposed to be going to have the NCS for my carpal tunnel, to see if there are any changes (I think it's worse, anyway!). But...I think it's time for another nerve block! I haven't been sleeping, so I upped the Amitriptyline, and it's helping me get some sleep, at least!:o :confused:
~Jaime~

Cts
 

Well, I had another block for my ON, and I'm feeling a lot better already. But, the carpal tunnel has got worse, and it surprised my neurologist (who did the tests). Funny how 13 months ago when I had my last NCS, my neuro tried to talk me out of surgery, saying I didn't need it...to this time, when the results of my right hand proved it had got worse...he was talking me into the surgery! lol He wants to do the tests again in 6 months this time...then I will be referred for surgery! I will probably have to wait a while anyway...that's the way it goes here.
:p
~Jaime~

Jamie, I get freezing shots both in my head and neck. The head ones I can manage, but I had the neck ones twice and told my pain specialist not to do them anymore. They are unbearably painful and *so* not worth it for me. It hurt so much going through the muscle tissue, I thought I was going to be sick and the room was spinning. I was lying down, but I felt very faint.

After the freezing wore off, it hurt worse than the original pain so I decided no more of that! I also don't get the steroid part of the injection anymore. I get freezing almost every week and I was getting the metallic taste in my mouth really bad from the steroids. The nature of my ON is not inflammation anyway-it's my MS so the steroid does nothing for me anyway.

Glad the shots are helping you. It's too bad you have to wait so long to get in. I have a standing order that if I need in on an emergent basis, the receptionist who books for my pain doc is to fit me in no matter what. I am very lucky.

The whole stim thing for me has been on again/off again, but there is new hope-there is a neurosurgeon here who has done 2 implants so far on ON patients and so my pain specialist is going to write him a letter and see if he will take me on so I might get a trial with the stim. Has your doc said whether a stim might be an option for you? I guess it depends on how bad each case is. Mine is pretty severe.

Hang in there. It's not easy, I know.

I don't always have to wait long to see my Neurologist, it's the transport to the city that I have to book in advance, as they are always busy. So, I try to plan my appointment a month or so ahead, that way I know I'll get to my appointment. My nerve blocks are lasting a while now, sometimes up to 3 months. So, the less times I have to travel to the city, the less stress I have (also means less travel sickness and nausea!)...and that suits me just fine! lol
:p
~Jaime~

Nothing new to tell, I'm feeling good at the moment...lets hope it lasts! But I just thought I would say that I'm going away, interstate, for 3 weeks, and will be offline during that time. So, if you wonder why I'm not around...that's why! lol
:p
~Jaime~

occipital neuralgia
 

hi glad your`r back jaime
i`v been away sometime too
glad the nerve blocks are still working for you
i have my 15th the end of may, glad i don`t have to pay for these.
sorry abought the arm & hope it`s improving.
jane sophia