Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)


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Old 05-30-2009, 09:17 PM #31
EE03 EE03 is offline
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Charliebubs, i've had two rhizotomies and I was in a lot of pain after both. The first was for a good while (over a month) I think, and the second I'm at a month and I'm still feeling it, although the second one isn't as bad as the first. My doctor warned me that I'd be in a lot of pain post procedure and it is to be expected since they damage the nerve. I hope yours told you the same. It gets worse before its better. I wish I could give you some more encouraging words, but it really does get better. Has your doctor given you any meds to help?

As far as the time frame, I understand that every person is different and they try to estimate, but it seems its an individual thing and that you just have to wait and see.

As for a pain free period, I've got overlapping issues and multiple things going on, so I'm not pain free. My case is slow going and I didn't expect that I would get total relief. Where your occipital nerve was done, I would hope that once the procedure pain passes that you'll be able to get pain free. Please post and let me know how you do once the nerves settle down. I'll be anxious to hear.take care, ee
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Old 08-18-2009, 07:13 AM #32
charliebubs charliebubs is offline
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Charliebubs, i've had two rhizotomies and I was in a lot of pain after both. The first was for a good while (over a month) I think, and the second I'm at a month and I'm still feeling it, although the second one isn't as bad as the first. My doctor warned me that I'd be in a lot of pain post procedure and it is to be expected since they damage the nerve. I hope yours told you the same. It gets worse before its better. I wish I could give you some more encouraging words, but it really does get better. Has your doctor given you any meds to help?

As far as the time frame, I understand that every person is different and they try to estimate, but it seems its an individual thing and that you just have to wait and see.

As for a pain free period, I've got overlapping issues and multiple things going on, so I'm not pain free. My case is slow going and I didn't expect that I would get total relief. Where your occipital nerve was done, I would hope that once the procedure pain passes that you'll be able to get pain free. Please post and let me know how you do once the nerves settle down. I'll be anxious to hear.take care, ee

Hi EE

Just a quick update to let you know that I'm doing okay. It did get worse before it got better. The procedure pain went eventually and I've been better since.

I think I was hoping for 100% results, and that hasn't happened, but it is much, much better than it was before. I'd say 70% better. I do still get twinges and a tingling feeling in the back of my head. I've also noticed that certain things make it worse....like if I'm tired or stressed or upset or if I've driven a long distance.

I went for a check up last week and the Dr said that the long term prognosis is good for me. I don't have any issues with movement of my head or neck and he said that's a good sign. He thinks there is a chance I'll have to have the RFA repeated, but that once more should do it.

Here's hoping!!

Now that I'm feeling 70% better I think I'm going to settle the PI claim that I have ongoing with the insurance company of the lady who put me in this position (she was driving too fast and caused the RTA which caused this ON )

I hope you're doing okay.

Charlie
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Old 08-19-2009, 04:29 AM #33
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Now that I'm feeling 70% better I think I'm going to settle the PI claim that I have ongoing with the insurance company of the lady who put me in this position (she was driving too fast and caused the RTA which caused this ON )
[/QUOTE]

Hi Charliebubs,

I'm glad you're doing better. I am still getting some benefit from the last block I had a little over a month ago. I'm getting twinges, the hot spots come and go, the throbbing headache and pain is there, but it hasn't totally flared up yet.

For what its worth, if it were me, I wouldn't settle the PI claim if it affects your medical. You don't know the long term efficacy of these procedures and it will probably have to be repeated. I'm in the "wait and see" stage with mine. I would be cautious about any type of settlement.

Take care!
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Old 08-19-2009, 06:43 AM #34
charliebubs charliebubs is offline
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Quote:
Hi Charliebubs,

I'm glad you're doing better. I am still getting some benefit from the last block I had a little over a month ago. I'm getting twinges, the hot spots come and go, the throbbing headache and pain is there, but it hasn't totally flared up yet.

For what its worth, if it were me, I wouldn't settle the PI claim if it affects your medical. You don't know the long term efficacy of these procedures and it will probably have to be repeated. I'm in the "wait and see" stage with mine. I would be cautious about any type of settlement.

Take care!
Thanks EE

I do agree with you in part, but I have been to see an independent orthodaedic specialist as part of the claim and he is going to add his long term/future prognosis into his report for the insurance company. They should then make an offer for settlement based on the fact that I am likely to have to have the procedure again.

I really just want to get the claim over with and get the insurance company off my back.

I can always have more treatments in the future if needed, as I have private health care which will cover the cost.

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Old 10-05-2009, 02:15 PM #35
christydiggs christydiggs is offline
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What do any of us know. We just get to live with this *&#$. I was confused and amazed when the NS said the muscles were the cause of it. I found a detailed picture of the nerves and they do exit in the muscles(probably not the best description, but all I can give right now). In theory, it makes sense, but right now, the stupid hot poker keeps getting rammed up the back of my head and I don't really like it. Anyway, my PM doctor was going to do a direct ON block and he didn't. He said that the RFA to C3 should take care of it. Time will tell, but right now, the ON's are pretty angry about all of this. I upped the dose of klonopin and I'm feeling pretty spacey too. And, I have the dizziness again that I got with the diagnostic blocks, so I'm begining to think that anything thats done to the cervicals effects more than I'd expect or my wiring is totally screwed up. I think i'd buy the latter more. And I'm watching the stupid calf muscle that keeps spazzing to see if all this has any effect on it(that may be related to the radiculopathy junk I've got going on). Oh well, our similarities are weird

Wow didn't know there were others like similar to me out there. I was in a car accident when I was 18, almost 14 years ago now, and to make a long story short I have to get nerve ablasions done from C-2 - C-7 on both the left and right side along with with burning the occipital nerves on both sides. In addition that I am on Kadian, baclofen, savella, topamax, flector patches, percocet for break through pain, which is a joke and all of this still barley keeps me functional. I still am in a lot of pain on a day to day basis and have to work full to to have insurance so I can go to the doctor to get all of these procedures and medicines. However, I am very fortunate to have wonderful doctor's, both my PM and neurologist who are determined to find something better and will are always there for me, sorry to hear that all of you have not had the same experince with your doctor's that I have had with mine though. I am at the point, however, that I just don't think I can go on the way I am and am afraid to bring up the subject of disability because of my age but I would rather die than go on living like this. I know this sounds drastic but I haven't any quality of life. I work and spend the rest of my time in bed trying to ease my pain and when I'm not working I don't get out of bed at all, I just hurt too much. Any how I don't mean to go on because I'm usually a positive and upbeat person which is part of my problem I think becuse I don't seem sick it's hard for people and even doctotors, to some extent, to fully understand how bad off I really am, but I try not to dwell. Any how best of luck to all of you and if you have any questions about my experinces please don't hesitate to ask.

Christy
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Old 10-09-2014, 04:04 PM #36
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I went through with it and I'm really uncomfortable. My PM doc did all four levels and the first three weren't too bad. The last one was pretty rough. They took four or five shots at it to get a total of 90 seconds of burn time, and each time the pain I was feeling got so bad that they had to stop, wait, and go again. Then he added more numbing medication to try to get it finished, but it kept on being painful. Finally, they got the full time, I think, but I'm a little fuzzy on that. Anyway, ice is my friend right now and moving is a little difficult because of the pain and my muscles aren't happy, but thats no surprise. I think I'll go back to around the clock dosing of klonopin for awhile. He told me I could be miserable for up to a month. I hope its not that long, but time will tell. I also hope this works for me.

Prairegirl, I don't know how you went through yours without meds. The last one was really hard to handle, and I had meds. I hope tomorrow is a better day. EE
did you get relief and is it permanent? Any problems?
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Old 11-01-2014, 10:42 PM #37
Jeffb63 Jeffb63 is offline
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Default Had RFA done 8 days ago, still in pain!!!

Hello all, new to the forums here...so like i said, i had an RFA procedure done 8 days ago and i am still in ALOT of pain. The first 3 days after the procedure the pain was quite dimmed down than what it was. But i started to feel the pain again at the fourth day. I am currently taking tegretol 200mg which seems to help with the pain but the it makes me super zombieish. Doctors have had me on ssri's and snri's in the past but they dont seem to work long term...why is that???? Any comments greatly appreciated
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