|
Radio Frequency Ablation update
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:eek:. I hope tomorrow is a better day. EE |
EE
I hope this works for controlling things :hug: you have been living with such a ugly monster for a good bit of time now. listen to your body and rest rest rest! be married to the ice pack for a month or longer if need be. heck its in the 80s here anyways :rolleyes: . I pray this is going to help you be rid of the pain. thanks for up dating us I have lots on my plate and havent had chance to touch base with you but you have been on my mind and in my positive thoughts. t.n / o.n. it all stinks! rest and let yourself heal and recoup. your in my healing prayers ellena :hug: PEACE BMW |
Quote:
Oh goodness! You poor thing! I can totally relate and honestly, I don't know how I got through it either. It is so painful and unfortunately, it will likely hurt for quite some time. I think it's like taking a stick and poking it inside an angry hive of bees. I hope that the pain will be "worth it" and you get some relief in the long run. Take whatever drugs you can to get some pain relief while you recover from this and see also if you can get some sleeping pills-my guess is, it could be hard to sleep. Hang in there, I am think of you. ((hugs)) |
BMW & PG, thanks for your good wishes. Sleeping isn't coming easy so here I am. I'm amazed at what we do to try to rid ourselves of pain. Most people don't have a clue, do they.
Hugs :hug: |
Quote:
No, I don't imagine they do. Sometimes I can't quite believe it myself-to say it outload sonds like I am talking about someone else's life. |
We all share that and have that aspect of these conditons in common. I can identify with you both. I keep posting here because there is so little information on forums about ON, but my posts could easily go in the spinal disorders thread too since I have the disc issues and the facet junk and radiculopathy going on at the same time. I'm still hanging in here with the pain but I still have the nonstop ON throbbing pain going and my shoulder is giving me fits still along with the stupid red hot poker that is stabbing me in the back of my skull. I think that one is the worst until the burning in the neck starts. That one runs a close second to TN pain in the early days of TN. Ok, I'm rambling here so chalk it up to increased meds. Low pain wishes and peaceful thoughts, EE
|
I wonder how many folks suffer from ON plus something else? I was disgnosed with MS in March 2008 and then 5 months later with ON, which came on suddenly after I had aseptic meningitis from an MS treatment. Personally I think the treatment caused or triggered the ON.
I had a BRUTAL headache that I didn't realize was anthing more than a bad headache for 3 weeks. When it got to the point I could hardly speak I was in so much pain (I am a queen at ignoring pain, believe me-I've walked around with a leaking appendix, on the verge of going septic) I finally went and saw my neuro who was amazed I was still functioning. I was treated with steroids and then as soon as that finished, along came the ON. Which it took some time to figure out, but I finally got in to see my pain specilaist and she knew right away what was wrong. Anyway, not trying to steal your thread-you just got me to thinking how manyof us have dual diagnosis. |
PG, I never get uptight about stealing threads. Everything we talk about here revolves around pain. I guess your ON is from demylination of the nerves given your MS diagnosis. The theory around mine is the muscles are so tight and in spasms that they are making the nerves flare. Whatever the problem, I so hope this works.
|
Quote:
Well see, that's what you and I would think, logically. My MS is c2-6, T 4&5 and L 10. So it would make sense it was the MS doing it. My pain specialist doesn't seem to think so. I also thought the ON was triggered from having aseptic meninigitis and walking around with it for 3 weeks before I had it treated. The ON came hot on the heels of the AM. Again, she thinks NO. She says it's the muscles squishing my nerves, just like yours. Weird eh? I still say it's MS and AM related, but what do I know? |
Quote:
|
Wow, you guys, I know how bad this can get. As I have said many times before; dealt with it for a LONG time. Anyway, yep, the C2/C3 has nerves that go up and in and out of the ON muscles. It gets involved...I know. I never did have an RF because I needed a fusion anyway. But I have had one for the lumbar. It does take time. And as my PM always says...the neck is a FAR different ballgame than the lumbar. You're right...anything going on with cervical spine, nerves, etc., is, to me, far worse since it is such a tightly congested space or rather spaces. Who was it that called ON the suicide headache? Boy, if that isn't the truth. I don't know how many times people insisted it was a migraine. That used to make me so mad. NO! These pains are NOT migraine pains. Although the PM I had at the time said I had "Cervicogenic headaches WITH Variant Migraines". No one needs two types going on at once and this was for 3 years. Anyway, I think it is just plain difficult to explain what it REALLY feels like. We all look fine on the outside but if people could feel the zaps and zings and the constant non-stop vise-like pressure, they would know that these types of headaches are NOT migraines. All I can say is that at its worst I wanted someone to take my head off! You guys are making me remember things. One time the pain was so bad my pupils were fixed and dilated. I know, that means near death right? But that is precisely what the paramedics told me when they came and got me from work. They rushed like mad to get me to the ER. I had asked that I go to the hospital I normally would go to and they said...no way! And this wasn't caused from the meds. I took my usual dose that morning. I am just saying...the pain was so severe. Now, they could have been wrong about the pupils as everyone has told me that just couldn't be. I am just reiterating what "they" said.
Oh, and forgot...I had one of these headaches two days ago; all day and into the night. I KNEW it was the C2/C3 but there was nothing I had done that could have been a trigger. The ONLY thing I can think of was a bad front coming through; barometric pressure gets me every time. So, I upped the Vicodin a bit, nuked the back of my head in the tub and used ice. I also take Klonopin but am allowed to take Valium when it gets bad. I hoard the Valium for the bad times. Anyway, it was around 2:00 am before it finally went away. Hang in there you guys. My heart goes out to anyone and everyone that has to deal with this on a daily basis. And I hope the RF's, meds or whatever it takes gives you guys some relief. |
Kathi, I'm sorry my descriptions are bringing back old, painful memories. I don't usually take klonopin on a steady basis and I'm trying to see if I can make it through the day without it today so cross your fingers. I know it will take time to tell if its successful and I do have a cervical disc issue, along with several other things going. The calf muscle hasn't had a single spasm since this was done so I'm watching it closely to see if there is any correlation to report back to the doctor. As for everything else, I'm still hanging by at least a couple of threads. I hate that the meds make me write so much, anyone else experience that??? Just curious :o
|
EEO3,
Oh, don't ever apologize! :) I am just saying...the ON is one hateful, miserable thing to have to deal with. And it IS difficult to describe what it really feels like. I used to try to tell people it sort of feels like one of those "ice cream" headaches; you know the ones that come on real quick after eating ice cream too fast. Only that it was ALWAYS in the back of my head. If I said that or something similar, then they kind of understood it. :) Oh, and the Klonopin was prescribed for "burning sensations" in my hands and feet. And, yep, went through all the testing for small fiber neuropathy. Long story short Neurologist now says Central Pain Syndrome or Central Sensitization. I don't think it came on from the surgeries themselves. I think it occured because the nerve roots were compressed for waaaaaaaay to long. But that is just my own theory. Plus, I was on every med under the sun; that changed to Xanax which worked wonderfully and now Klonopin. The good thing is...for the last 3 or 4 years I have stayed at the same dose. Oh, and yes, I take Vicodin as well but only one sometimes two a day...it makes me real chatty. Can ya tell? LOL! Hang in there and I hope you can see some relief soon. I meet with my own NS next week because my arms are in a lot of pain. So, who knows? I am guessing the C6/C7 but let me see what he has to say. |
Quote:
Kathi, I just posted the results of the lumbar MRI in the spinal disorders thread. I'm really depressed now. More disc issues. I already have enough to deal with and now this! I'm glad I'm not the only one who can't stop talking on these stupid meds. I'm still at the same dose to although until this week, I wasn't taking them steadily. I'm beginning to feel like I'm literally falling apart. Too much gloom and doom here and I'm blaming the meds again. Do you also get brain zaps from klonopin? I do and its a trade off for me - lessen the burning pain and put up with brain zaps. :( And now a visit with a new NS. Just what I wanted in the new year, another doctor :eek:. Anyway, I'm gonna go bury my head in the sand... |
Thanks guys for posting here. It's nice to get some convo going, even if the topic is something we'd all like to forget. So EE03, post away. I will keep reading! ;)
Kathy, I loved your idea of telling people it'slike an ice cream headache at the back of your head. That is a REALLY good description and something everyone can relate to. I was the one saying it's called the suicide headache. When I have read things, that's how it's always described and I have to say, it's also pretty accuarate. I had a REALLY bad flare on Sunday night and I did want to just die it hurt so much. I managed to get through the night and by mid-day the next day it settled down some. I think that one was a "12" on the stupid pain chart. Who came up with numbers anyway? Most women do not think in terms of numbers and I have a hard time describing my pain with numbers. I am creatively wired and would do much better describing the pain with words, instead of numbers. Usually I do and my pain specialist always says "Oh you're so discriptive!" I am guessing she doesn't have alot of patients like me! *laughs* Anyway, I just thought I would toss my 2c in. |
Okay, today my neck feels worse than it did a couple of days ago. I hope this is normal. I'm going to put some heat on it and see if that helps any. I'm still talking way too much, but if it helps me deal with this *#&$@&$^ then so be it. I did watch National Treasure 2 this past week. If anyone enjoyed the first one, you'll like the second, IMHO. Anyway, I was warned that the pain would be worse, I'm just amazed that it vascillates to such an extreme. Anyone else notice this??? Maybe I need to go back to a super soft, squishy pillow. PG, its hard for me to deal in numbers too, but most of the time, vivid discriptions escape me. I get so tired of trying to explain the pain of this conditon and TN to people, that now I usually just give up. Most people think that I look fine, so how can I deal with pain that bad. I'm sure you know the drill. Anyway, I'm still bummed out that I have more issues to deal with. That just bites:(.:(:(
|
Oh my goodness! I am so sorry it's getting worse instead of better. I know when I had mind done in November it was awfully painful and it seemed like forever till it just went back to the "normal" pain.
Hmm what I can I do? How about some movie recommendations? I don't know what your taste in movies is, but I will tell you some that are favourites: (Look them up on IMDB.com to get more info on story lines and actors.) -7 years in Tibet (This is one of my all time favs!) -The Wooley Boys (If you liked Second Hand Lions, you will love this one.) -Snow Walker (beautiful story about a bush pilot and an Inuit woman, based on a Farley Mowatt story called Walk Well my Brother.) -Meet Joe Black (Sir Anthony Hopikins is so beautifully elegant in this, I wish he was my dad.) -A Prairie Home Companion (great music and I love Garrison Keillor!) -Ironman (It's new and a great adventure.) -October Sky (Coming of age story about a boy born and raised in a coal mining town who dreams of being an astronaut.) -Apollo 13 (SO very cool!) -Astronaut Farmer (Hilarious!) Oh and the HOUSE series on dvd. I adore HOUSE. As you can see, I am a movie nut. It's my fav thing to do, aside from reading. Anyway, I hope you can check some of these out. If you need more, I have more! |
Quote:
Also, I added my comments to your reply so I guess it's not your reply any more. I tried putting quote marks around your reply, sorry! |
I'm in my second week and I'm still having problems. My head has been on fire and it's ultra sensitive. If I just touch it lightly, the pain increases incredibly. The entire area is still quite sore and I'm still having bad pain in the shoulder blade. So, I'm staying on klonopin since its dulling some of the burning, and I'm still waiting to see what the outcome is with both my fingers and toes crossed.
|
:hug:
I know with this crappy cold weather things are just magnified and I hope you can just relax in hot bath and get rid of some of the aches and stress. I hope the "K-PIN" med is helping with the burning. I get that sensation in my lower lip and it really s**ks . maybe call doc or go to e.r. if it gets really bad. :hug: Praying things get better for you quickly Ellena. :hug: PEACE BMW |
Quote:
*Frowns* that's so not good. I had hoped it was healing up and you were feeling better. Do you have anyone to give you a little extra TLC when you are feeling bad? I hope so. I am thinking of you. ((hugs)) |
My PM thinks my pain is from the procedure. He did an ESI to see if that would calm things down so I'm still in the wait and see stage. I'm still getting the ON headaches, so I still don't think this has improved it, but maybe that will change too, I don't know.
|
It is amazing!
Quote:
Beth |
Welcome Beth, but I'm sorry you've had to find your way here. I'm still trying interventions for my ON and neck pain so I can't really say what works since I don't know yet. There are a lot of great people on this forum and they offer a lot of knowledge and support.
Take care |
occipital neuralgia
Quote:
|
Suchandra, I can't speak to the pros and cons. Both of the procedures you're describing involve deliberate damage to the nerves, just by different means. I've had direct ON blocks using steroids and anesthetic that calmed the nerves for awhile, but they can only be done so many times in a fixed period of time. The RFA I underwent was in the facet joint nerves and my doctor was hoping that it would help the ON by stopping the muscle spams and tension.
Before you go through with any procedure, please make sure the doctor goes over the risks and complications. In the US they have to get informed consent. I don't know how things are done in your country, but once the RFA is done, there is a high probability that when the pain returns, it will be worse than before it was done and since its a destructive procedure, it will have to be repeated. Take care and welcome to the forum. |
Quote:
Is that a personal view or a medical one? |
Peter B, this is not my personal opinion, it is that of the medical community. Consider this link: http://www.espalda.org/english/divul.../rizolisis.asp
At the bottom of the page, it indicates "Even when it is successful, the effect of rhizotomy tends to diminish with time." I've also seen a neurosurgeon who told me the same thing so check with your doctor. The link above also references the selection criteria which are necessary steps and the US guidelines I've read indicate a lesser percent than that article states regarding the elimination of pain. I have several other links book marked discussing the same thing, but I can't locate them at the moment. I'll keep looking for them, but if you Google the subject, I'm sure you'll find them also, and note that I haven't had the RFA done directly to the occipital nerve, only to the facet joint nerves in the hopes it would free up the occipital nerves. Take care. |
Thanks EEO3.
I'll read up about it so I am a bit prepared. I've had steroid facet injections but the new Dr says the RFA lasts much longer. |
Hi everyone,
Sorry to thread-jack EE. :) Firstly - how are you doing now after the RF? I had RF lesions (which I guess is the same thing as ablation, we just name it differntly in the UK!) to the occipital nerves bilaterally 8 days ago. I feel worse at the moment than I did before :( My head is so sore, both to the touch and internally (if that makes sense). Today I have had a really bad day - hence coming back to the forum here. My head almost feels too heavy to keep up and I struggle to find a comfortable position. If I can sit supporting my head, then it's better. EE - I know you said that pain was worse initially after RF for you too - did that pass? How long did that take, if so? Have you had a lasting pain-free period now? My specialist said that this would work for 12-18 months for me. He did say that the nerves may regenerate before that time is up and the procedure may have to be repeated. I had 3 lots of steroid/local anaesthetic nerve blocks before this and they did have an almost instant relief (although it didn't last long - the longest was 10 weeks) and I was hoping for the same instant relief with this procedure. I can't believe I feel worse. It's so depressing. :( Any words of comfort would be good :) |
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.:hug:take care, ee |
Quote:
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 :) |
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:eek:. 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! |
Quote:
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. :) |
Quote:
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 |
Quote:
|
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
|
| All times are GMT -5. The time now is 02:42 AM. |
Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
vBulletin Optimisation provided by
vB Optimise v2.7.1 (Lite) -
vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.