ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Captain Deb on October 24, 2010, 12:52:08 pm
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Hi folks,
In accordance with the agreement I made with my new pain doc, Dr Mark Hines, I am doing research on the various therapies he has recommended. I might as well save them here as on my private computer. These are the papers/websites I am looking at regarding ridding myself of the head pain I have been experiencing for the past 8 years.
First one--on pulsed radiofrequency ablation of the greater occipital nerve for occipital neuralgia:
http://asra.com/display_fall_2007.php?id=14 (http://asra.com/display_fall_2007.php?id=14)
Notice the patient is an acoustic neuroma patient!
Capt Deb
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Another on radiofrequency ablation--this is an option for my sacroiliac pain as well.
http://www.medcentral.org/body.cfm?id=352 (http://www.medcentral.org/body.cfm?id=352)
Capt Deb
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I am going for the radiofrequency ablasion November 10th...they say it could take five weks to work but hey whats five weeks when i been suffering for 2 1/2 years!
Also on new muscle relaxer Tisanidine
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Capt Deb and cin605: i have heard that the nerves can regenerate after the procedure and that the pain can return. What have you both learned in your research?
staypoz
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Capt Deb,
Thanks so much for posting, I'm again at a dead end with my treatment and I'm seeing the headache specialist tomorrow. I will mention both of these articles as well as the other research I've done on scar neuromas. Keep em coming : )
Liz
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Capt Deb and cin605: i have heard that the nerves can regenerate after the procedure and that the pain can return. What have you both learned in your research?
staypoz
Yes they can and the procedure may be repeated and "tweaked" in a few weeks if they don't get all of the painful part of the nerve the first time. It is not a permanent fix and can last from 4 to 16 (?) months. However with some people it lasts even longer.
Capt Deb
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My Dr. informed me of this also but atthis point any relief is good relief no matter how long....if i can have a life for 3-12 months i will take it....Like captain Deb said they can do a reapeat after it wears off.Lets all say our prayers now.....
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I may see if I can get a "twofer" for this procedure on both my sacroiliac and occipital nerves. May feel like being in the Spanish Inquisition torture chamber, but HEY! I had 5 days with a chest tube--I am one tough wench and can stand just about anything as long as they give me a little happy juice first! Zap! Zap!
Capt Deb
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I've got a medicine cabinet full for whatever ails me - better living thru chemistry!!!! Love your attitude, Deb!!!!!
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My Dr said i will be sedated for the proceedure....temporary abnesia...the drug is called Versad.Very strange...but if i can not recall the pain i guess thats good!
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I saw my wonderful new GP today and presented her with the written up treatment plan from Dr Hines. She herself had a facet nerve ablation in her lumbar spine (Mine may be in cervical 2-3).--she said her pain went away and has never returned and that was 2 years ago. She also says I should get my head fixed first, because a bad headache is more intolerable than just about anything. I'm calling tomorrow to set up an appt and get this show on the road. I sure wish I had done this 7 years ago!! $5000 deductible insurance and unable to work is one reason. Hopefully I'll get to be the guinea pig for the rest of us with neck/occipital pain that leads to brainwrecks!
Hugs,
Capt Deb
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Paper on C2-C3 dorsal rhizotomy, another alternative. Note the allusion to patients who had previous skull base surgery:
http://www.ncbi.nlm.nih.gov/pubmed/14625243 (http://www.ncbi.nlm.nih.gov/pubmed/14625243)
Capt Deb
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Keep us posted, Capt Deb. I hope it works for you!!
Just this week I had another consult to get approval to have the neurostimulator implant. We'll beat these darned brainwrecks yet!!
staypoz
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I hope so, Staypoz! I went to my neurologist today and he told me to stop taking Lithium cold turkey and that I didn't need help with the withdrawal. Here goes.
He recommended that I try the nerve stim. implant from Medtronic that you are applying for. I'm having reservations about that since I haven't yet tried Botox. I asked about Dr. Ducic, but he wants me to get some nerve blocks at the Washington Hospital Center's Pain Clinic with Dr. Kodgi. They didn't have an opening until Jan 14 so he asked to speak with Dr. Kodgi himself and explained my case. The doc. said he'd see me sooner without a new patient appt. and they called me and gave me Nov. 23 at 7:30 in the morning. It's scheduled for the O.R. and I'll be sedated which is way different from Dr. Dombrosky and my accupuncturist who did it right in the office with no sedation. I think they mean business there. My friend's wife who is a retired Hopkins doctor said don't go to Hopkins for neuro, that the best neuro around is at the Washington Hospital Center. I found that to be true for my father several years ago and I'm getting those vibes now. Dr. Schlosberg, my neurologist said if the nerve block works, then it's an indication for the surgery with Dr. Ducic. At least now I feel I have some direction and a plan. Now all I have to do is wait until Nov. 23. Hopefully it will be a Thanksgiving to be thankful for.
Mei Mei
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Sound like you may be getting somewhere Meimei......maybe Captain Deb or I can tell you how our nerve ablasion goes before then.
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Yes, I was pleasantly surprised. He finally said we've tried all the drugs and then referred me out. I'm already feeling weird because I didn't have my evening dose of Lithium and am going through withdrawal, but it didn't work for headaches. Wish I didn't have to go through so many drugs before he realized the drugs won't work for an AN headache. I'd really like to hear your stories. It sure feels good to share information and help the group out.
Good luck with the ablation. Hoping it works for your sake!
Sleep well tonigh!
Mei Mei
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I'm sending you good vibes and hope it is successful. Is anyone going with you? I wish I were there to support you more. I'm here in spirit and think of you. I hope it isn't painful.
Mei Mei
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I'm so eager to hear how the procedure goes and how both of you respond.
Good luck and hopefully you feel good as new!
;D
Liz
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Good luck cin605!
staypoz
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Nerve ablaision is done .....it hurt pretty bad when they were doing it....they do not completely sedate you....like they did for blocks becouse they need you to be responsive....site is a bit swollen...sore...thye said it could be sore for 4-5 weeks or maybe not at all....sent me off w/ a script for percocette....ice paks....I will keep you guys posted....bring on the relief!
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Geez! No sedation for that? I'm proud of you woman! God Bless YOU! Stay home now, take meds and try not to think about it. Think happy thoughts and thoughts of the ocean!
Mei Mei
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Yeah Cin!
I am on the road towards this procedure with a really top notch pain specialist--'bout time after 8 years. My personal theory is that our headaches are not "organic"headaches--caused by hormone imbalance or something systemic. Hence the limited results we get with meds like Topamax and Imitrex. They are more "mechanical" or "surgical trauma" headaches cause by disruption of nerves which occurred during surgery due to a number of different factors. I believe that I had a mild case of occipital neuralgia before surgery since I have had neck problems and headaches for years. I have had a number of "crashes" in my lifetime--a whiplash car accident in high school, a skiing wreck in my mid 20's and I got run over by a bunch of novice tourists on a motoring sailboat while I was windsurfing. So my neck was a wreck to begin with and then it was jammed into a vice for 4 hours while they diddled around near my brainstem. Yes, traumatic.
My plan with my new pain doc is to work on my back first and allow the Botox in my head to wear off so he can map out my headache pattern with more accuracy. The Botox works pretty good, but I still get neck and occipital pain. I am planning on nerve ablation or rhizotomy, which from my research seems to be pretty much the same thing.
On Monday I had over 40 shots in my lumbar region--peripheral nerve blocks--OOOOOUUUUCH!! Way more painful than I expected and no sedation. He had to stop a few times to allow me to quit sobbing and calm down and I am pretty tough when it comes to pain. I go back in 3 weeks for another set--he wrote me a Xanax prescription for next time so it shouldn't be so bad. I have had SI joint injections--3 of them, but with limited results so he thinks that the pain is coming from the tendons and ligaments surrounding the sacroiliac joints rather than from the space inside the joint. He has no doubt that this whole syndrome began with my 4 hr laparoscopic hysterectomy--yes I am the Queen of Complications.
After the second round of peripheral nerve blocks, and my pain is reduced, he will go in and ablate these same nerves, which involves going in with a radiofrequency needle and frying the nerves which will interrupt their function of sending pain signals to the brain. My new GP had this done in her lumbar spine and she has never had pain since.
After all this is done my Botox should be worn off which I will be glad of since I look pretty strange--my eyebrows droop, kinda making me look like a Vulcan, but my forehead is smooth as a baby's butt. I would rather have a few wrinkles than this weird expression since I wear my hair over my forehead anyway.
The plan is to do some nerve blocks in my neck, C2-C3, which I haven't done before and then some other blocks along the occipital nerves to see exactly where the irritation is located. I have had 5 occipital nerve blocks before, with fairly good results, but you can only have 6 a year. My new pain doc, Dr Hines, maps out the bony structures with a fluoroscope and metal markers, giving much more pinpoint accuracy than the last pain doc I saw. The last pain doc I saw was the regular anesthesiologist at my local hospital who worked in the hospital's pain clinic, but the new one runs a specialty pain clinic and all he does is pain medicine. Again, if 2 blocks work we go in with either chemoneurolysis or ablation. I'm doing more research on the difference betweeen the two.
So that's where I am in the process of getting my life back! It has just sucked for 8 years either having a terrible headache every time I try to go to have some fun and lately doing nothing but sitting in a recliner watching TV and going to doctors appointments. The biggest thing I have done was go to Philly and Chicago to the ANA symposiums, which were great, but I was in a lot of pain the whole time. Kind of put a damper on a lot of the things I wanted to do.
I'll keep you posted on my progress, and again Cin, let us know how you progress.
Love and No Ache to you all!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/skull_sword_through_head_lg_clr.gif)AAAAARRRRR!!!!!!!
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Dear Deb and Cindy,
Thanks so much for the updates on your ablation and plans to get out of this pain situation. I feel like I am a carbon copy of both of you with the exception that I had a retrosigmoid surgery. My upper neck (probably C2-3) and sub occipital area have been in even more pain the last two weeks ever since I cracked two ribs helping my father on the weekend when the aides were off duty. Nothing I do for the area helps, but the ribs are on the mend. If it helps as added information, please tell your pain docs that a fellow ANers recently was in the ER for broken ribs and they gave her iv morphine that helped the ribs, but didn't touch the occipital or neck region pain. I think it's useful information.
Wishing you all a pain free day!
Mei Mei
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They were giving some kind of pain relievr through an IV during the proceedure....the nurse said when it hurts yell more drugs.....stiil hurt like hell....BUT today i do not feel too bad....woke up at 3 am and turned on the heating pad...took a lorazepam two tylenol and dozed back off till 8am....it not killing in the usual spot its more at injection sites....I have c2 c3 damage also....just went and got an iced coffee..i am hooked on McDonalds iced coffee luck its a minute from my place.
Go back for follow up right before Christmas....I think we may be onto some thing here.....My Dr...is well known spine specialist...they move my appointment earlier so he could fly of to san francisco for a seminar,he just got back from Washington...I say fly everywhere get knowledge and share,share,share.
they use teflon needles for the radio frequency so they do not stick to the nerve they are cauterizing ...i guess.
i am very grateful i saw this guy in the Wentworth Douglas Hospital flyer and asked my primary for a referal.
Seems like i have to tell these drs exactly what i need....gabepenton...ect.
I feel like maybe i should be taking some kind of course to help other people that go through this..and gather all thier resources and tell them how they should deal...go here..go there..skip the middle man.
Going to Dartmouth in Jan for audio work up to get referal for hearing aid.
I am not messing around w/anymore..
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Hey Cindy,
Could you copy your nerve ablation experience and put it in a new topic? Like "Cindy's nerve ablation for headaches" or something--I think it may be getting lost in this research file topic.
Go to you posts and hit "modify" and highlight, copy and post it post it in a new topic. This procedure you are going through is a really big breakthrough for all of us and it would be great if it were more visible to new people coming onto the headache Section. I am so excited for you. Ordinary people can't fathom how life-killing this type of pain is--the IV morphine not touching the pain is just an example. When I had my thyroid surgery, I developed a brainwreck a few hours post-op, probably from the position they had my head in from the surgery. They doubled my demerol to 50 mgs, which didn't touch the headache. I finally ended up begging them for a big dose of IV Valium so I could just try and pass out. I have contemplated suicide more times than I care to talk about, just for some relief, but I think of my wonderful husband and grandkids, and that thought goes away pretty quickly.
I am having a good bit of back pain today because yesterday I drove to Asheville (the Paris of the South) with my hubby and Uncle and ate at my favorite restaurant and did some shopping and went to the world's best chocolate shop called "The Chocolate Fetish", browsed great art galleries, visited the Southern Highlands Craft guild folk art center on the Blue Ridge Parkway, and just had a really fun fun fun day with my favorite Uncle. I haven't had a cool outing like that in almost a year and a half. Of course I'm paying for it today with a good deal of back and head pain--hopefully the back is just muscle pain from unused muscles and not the nerve blocks not working--it does take a few days to kick in sometimes.
Hugs to you all---
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/skull_sword_through_head_lg_clr.gif)
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A Pain Clinic website--lots of good info on different techniques for pain relief
http://www.painclinic.org/index.htm (http://www.painclinic.org/index.htm)
Capt Deb
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Done deal Deb...Sorry for the hijak!!! ;D
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Deb, that's in interesting site, thanks for sharing! I bookmarked it for future reference.
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Found this on exercise headaches, which I get like crazy--notice #6 on the list of causes. No doc has ever suggested a lumbar puncture to me.
http://www.severe-headache-expert.com/exercise-headache.html (http://www.severe-headache-expert.com/exercise-headache.html)
Capt Deb
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Deb,
Funny you posted this, because I have horrible exertional headaches ever since the surgery and I take indomethicin, which helps amazingly well for them, but unfortunately is VERY tough on the body especially the tum tum. As always thank you for sharing! :)
Liz
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Thank you, Deb for sharing these sites. I'm going to take the papers with me when I meet the Pain doctor in the OR and ask him about ablation and also take the two tests on the pain clinic site you just sent. The results of the test would be good information for my appointment on the 23rd.
Mei Mei
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OK, I am having officially a 50% reduction in my back pain level since my peripheral nerve blocks one week ago. YAAAAAAAYYYY!!!!! I no longer wake up with level 7-8 back pain and have to take 10mg Percocet and go back to bed for an hour before I can move enough to get out of bed. I am keeping a journal and documenting all pain levels, activity, and meds.
Yesterday I made condo reservations for a week at the beach to celebrate my Uncle Bill's 90th birthday party and Thanksgiving. I feel like a different person with this drop in pain level. The day after I get back from the beach I go in for another round of lumbar injections (this time with a few Xanax) and if I keep making progress, I will go in for a full-on nerve ablation.
Got a pretty bad headache running around doing errands this afternoon--boy this Botox can't wear off fast enough so I can start this process for my neck pain/headaches.
I can't believe it has taken almost 8 years to get to this point--I sure hope none of you reading this have to go through all this run-around before you get the relief you deserve!!
Hugs,
Capt Deb
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Deb,
Funny you posted this, because I have horrible exertional headaches ever since the surgery and I take indomethicin, which helps amazingly well for them, but unfortunately is VERY tough on the body especially the tum tum. As always thank you for sharing! :)
Liz
I took Indomethicin for 4 days and ended up with violent stomach cramps--not for me at all! I may end up with a lumbar puncture as Doc Hines begins working on my head. He wants to check hormone levels, too. It would be great to work up a sweat without working up a brainwreck at the same time, wouldn't it???????
Capt Deb
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I took Indomethicin for 4 days and ended up with violent stomach cramps--not for me at all! I may end up with a lumbar puncture as Doc Hines begins working on my head. He wants to check hormone levels, too. It would be great to work up a sweat without working up a brainwreck at the same time, wouldn't it???????
Capt Deb
I too have had lots of stomach issues with it, but I take prilosec daily and it helps immensely. It is fantastic to be able to get the heart rate up, I think that exercise has been the single most important thing to gain the ability to do since surgery. Its what keeps me sane!
I'm interested to see what the lumbar puncture would do, I had one after surgery like many, but they never did a blood patch when I had my CSF leak or anything? I'm curious for sure.
Liz
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??? It's odd, but unlike you, I don't get killer headaches with exercise but just from sitting quiet. I've hired a trainer for the year and until I fractured my ribs helping my father on Halloween, I was exercising and getting back into shape with the routine he's given me. No headaches after the workout. I don't know why I get brain wrecks from sitting down or sleeping. What's the difference between our headaches and exercise tolerance? I take Avapro 150 in the morning for hypertension. Maybe it helps with the exercise. Do you have a blood pressure cuff to take your BP before and after your exercise. Do it and find out what is happening when you exercise. My BP is normal during exercise.
Let me know what transpires. I'll be interested to hear about this.
Mei Mei
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Capt Deb, why would you have a lumbar puncture? To have anesthetic to relieve pain? Doesn't sound like a lot of fun.
staypoz
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From what I have been reading, exertional headaches can be triggered by abnormal CSF pressure--a lumbar puncture is the way to find that out. I have been going to the gym off and on since my surgery, but I just get so DISCOURAGED! I'll make some progress, start feeling good, and then WHAM, some kind of sh*t hits the fan. It is an almost 35 minute drive to the gym and I get all checked in and changed and get a brainwreck within 5 minutes. I love my gym, too--it is a Wellness Center with a pool and most of the members are a tad older and the music is not screaming loud. I want to take a Zumba class and a yoga class, they offer both. Mostly I want to feel good again, something I have forgotten what it's like!
Capt Deb
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Understood! I still get exertional headaches, but much less frequently now. I have given up taking classes at the gym and use a rowing machine instead. I think that has also helped strengthen my neck, back and shoulder muscles, which I hope also helps prevent the darned headaches.
I go for my neurostimulator trial implant December 1st. Stay tuned!
staypoz
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FYI, Staypoz: My neighbor called me yesterday and said her friend in Minnesota has a Medtronic implant now and feels great on it. I wish you the best with it and hope you get back to normal life.
Capt: I was told several years ago by an endocrinologist that I have Ehlers Danlos Syndrome. Google it and find out if it is worth pursuing if you have it. I'm going for my pain appointments next Monday and then on Tuesday the doctor has me scheduled for the OR to do the injections under sedation. I forgot to mention to him that I have this Syndrome and will fax him tomorrow about it. My dermatologist told me the big place to go for Ehlers Danlos is somewhere in NC, but I didn't ask where. I'll see if there's someplace around here to get support and find out definitly which form of it I have because there are several forms. My daughter has a stronger case than I do. I also grind my teeth and have tinnitus. The web information I saw yesterday said that this is part of it. So is sleep apnea and I have that too. No matter how I label it, I just want to get back to how i was feeling before the surgery. At this point in time, that's a tall order, but I'm ordering it.
Mei Mei
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??? It's odd, but unlike you, I don't get killer headaches with exercise but just from sitting quiet. I've hired a trainer for the year and until I fractured my ribs helping my father on Halloween, I was exercising and getting back into shape with the routine he's given me. No headaches after the workout. I don't know why I get brain wrecks from sitting down or sleeping. What's the difference between our headaches and exercise tolerance? I take Avapro 150 in the morning for hypertension. Maybe it helps with the exercise. Do you have a blood pressure cuff to take your BP before and after your exercise. Do it and find out what is happening when you exercise. My BP is normal during exercise.
Let me know what transpires. I'll be interested to hear about this.
Mei Mei
Mei Mei,
Its strange because I get headaches several ways, but these are totally different than the ones that start in my neck, but feel the same as when they radiate to the side of my head. My ear aches and I am forced to shut my eye and forget about bending over to get the water bottle on the ground! Ugh, thankfully I have something that helps, because those brain wrecks were not something I could "work through" if you know what I mean.
Capt,
I was curious if this pain was from pressure from CSF fluid, would make sense because I've had a CSF leak and can for sure see where it would come from. How exactly would a lumbar puncture diagnose this?
Keep up the research, I've just got to find a new Dr who can help!!! Stuck again!
Liz
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I know what you mean, Liz. It's a mind boggling pain that you just can't describe when it's out of control there's nothing you can do about it but pop some pills, put ice on it and veg out in misery till it goes away. When this happens daily, you really get down and people just don't want to hear about unless they are very special at empathizing.
I guess you know I've been referred to Cleveland Clinic Pain Center and am going there next week for a nerve block with a fluroscope. Were your blocks done properly with a fluroscope to locate the nerves with accuracy? Give a thought to Cleveland. You can get there from Hartford on Southwest to Cleveland. Hope you find a good doctor.
Mei Mei
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Thanks so much Mei Mei, they used xray to locate the bony processes, but not sure if that's a florescope too? I think they did a good job with the blocks, but I need to find another method to help where the blocks don't. Currently I'm struggling with the side of my head and up to the crown. The neck and shoulders are sore, but not like before the blocks, so I can deal with the tenderness. Its just the rest of the pain that's a mystery now...
Let me know how Cleveland goes!
Liz
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Hello Ladies - Pattycake here after some time off. Sometimes I have to take a break - but today light bulbs are popping off in my head. I can so relate to (1) "vegging in a chair watching TV being quiet"; (2) exertion headaches are real causes? thought I was being lazy or nuts; (3) Nerve blocks in my head have worked well, Botox did nothing for me, (4) managing my meds is a daily chore - guessing how bad it will become today & how much drugs to take; (5) People are tired of talking about it - sympathy has limits after several years (6) Life is passing me by & I miss it !! I am very interested in the results of your blocks ... I am afraid to do them - but if it works perhaps fear can be left behind. My Boston Pain doc suggested it once, I asked him to try something else - didn't want anybody in my neck! I think my headaches are becoming less Intense, so I'm feeling lucky. It is still a daily battle & I live a very quiet life. But my mood is lifting - even the minor change has been a relief. Thank you all for sharing your journeys - Chronic pain can be a lonely place.
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You articulate so nicely, Patty Cake. Chronic pain sure is a lonely place and yes, life is passing us by and we're missing it. I bought a Kayak and only used it once. Beg off for evening parties because I can't stand going out at night and don't want to be around people as the crowds distract me. I think people are giving up on me and stopped asking me to join them. I just want to be home and horizontal as much as possible with an ice pack around my neck and near my meds just in case like what happened an hour ago.
Bless you all!
Mei Mei
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Hey pattycakes!
Long time....
I know what you mean by being sick of talking about it! I don't have much going on in my life but seeing doctors, so what else is there to talk about? I was an artist and an art professors wife at a University with tons of friends and a very active social life, but all that is gone (except the husband-he is miraculously still around, but has moved from life-partner and playmate to caregiver and God bless him, he is still here!)
Capt Deb
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Your doing better then me Deb....I had just got back from zip lining in Mexico,had my own business,was engaged to be marriied....then ...I came home and three days later got the news....You have a tumor..we have to do " minimly invasive surgery"....I do know know what invasive surgery is and never want to find out!
Now i am single....the only place i zip is one side to other in the isles at the grocery store!Business?Poof gone!
But...Hey...Life has other plans for me bigger better ones are on the horizon...do not look back becouse "you WILL fall!
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Hello Ladies - Pattycake here after some time off. Sometimes I have to take a break - but today light bulbs are popping off in my head. I can so relate to (1) "vegging in a chair watching TV being quiet"; (2) exertion headaches are real causes? thought I was being lazy or nuts; (3) Nerve blocks in my head have worked well, Botox did nothing for me, (4) managing my meds is a daily chore - guessing how bad it will become today & how much drugs to take; (5) People are tired of talking about it - sympathy has limits after several years (6) Life is passing me by & I miss it !! I am very interested in the results of your blocks ... I am afraid to do them - but if it works perhaps fear can be left behind. My Boston Pain doc suggested it once, I asked him to try something else - didn't want anybody in my neck! I think my headaches are becoming less Intense, so I'm feeling lucky. It is still a daily battle & I live a very quiet life. But my mood is lifting - even the minor change has been a relief. Thank you all for sharing your journeys - Chronic pain can be a lonely place.
Pat,
Miss hearing from you on here, good to see you're back! Exertional headaches are real! No joke...
People don't know how to respond to others who have chronic pain. Did you ever get the book that Phyl recommended? Its living well with a hidden disability. I can let you borrow it if you would like, or you can get it on Amazon. Its a really easy read and eye opening...
Here's the link to buy it on or give me a call and I can bring it to you.
Amazon http://www.amazon.com/Living-Well-Hidden-Disability-Transcending/dp/1572241322/ref=sr_1_1?ie=UTF8&s=books&qid=1291321843&sr=8-1
Welcome back,
Liz
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I have quit Botox injections and expect my headaches to resume within a few weeks to a month. I really want a permanent fix, or at least something that will last more than a few months so I can travel a bit more. Here's what I'm looking into and have found a doc that does it. I may have this done on the damaged sacrotuberous ligament in my lower back that has been killing me since May of 09.
http://www.prolotherapy.com/articles/blumenthal.htm (http://www.prolotherapy.com/articles/blumenthal.htm)
Capt Deb
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Pattycake--nerve blocks are really nothing to fear--they only hurt for a few seconds and you can ask for a few Xanax or something which really takes the edge off. Mine involved 2 injections in the occipital area. The best place to go for them is a reputable pain clinic. I had them for a year and it was the first year I actually got any relief. I can't believe I waited 4 years to get them--had huge deductible which was a big factor. I quit them in favor of Botox, which involves a lot more injections--around 15 or 16. You get used to it knowing that this 5 minutes of mild torture helps get your life back.
If the nerve blocks work, you may be a candidate for a radiofrequency nerve ablation, which puts the offending nerve to sleep for a really long time, sometimes permanently. My pain doc is currently working on my back and when the Botox wears off--will start on the head pain.
Capt Deb
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Pattycake,
I know where you are coming from. I don't even bring up my problems with my family because they really aren't listening. That's why this Forum is so important to me and all of us. Chronic pain is no longer a lonely place because we have us and I feel so well supported. If I need to say something, I just get on the Forum and write to a friend that I met through the Forum and know someone's there listening that really understands.
Don't be afraid of the blocks. I did the first three without anyone holding my hand and the last one in Cleveland Clinic, the nurse held my hand but what happened afterwards was a disaster. I don't want to lie and say it doesn't hurt. It really does but it is over fast.
Hugs,
Mei Mei
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Hello Ladies - Pattycake here after some time off. Sometimes I have to take a break - but today light bulbs are popping off in my head. I can so relate to (1) "vegging in a chair watching TV being quiet"; (2) exertion headaches are real causes? thought I was being lazy or nuts; (3) Nerve blocks in my head have worked well, Botox did nothing for me, (4) managing my meds is a daily chore - guessing how bad it will become today & how much drugs to take; (5) People are tired of talking about it - sympathy has limits after several years (6) Life is passing me by & I miss it !! I am very interested in the results of your blocks ... I am afraid to do them - but if it works perhaps fear can be left behind. My Boston Pain doc suggested it once, I asked him to try something else - didn't want anybody in my neck! I think my headaches are becoming less Intense, so I'm feeling lucky. It is still a daily battle & I live a very quiet life. But my mood is lifting - even the minor change has been a relief. Thank you all for sharing your journeys - Chronic pain can be a lonely place.
Video on nerve block technique:
http://www.youtube.com/watch?v=udDaNhPNwT8 (http://www.youtube.com/watch?v=udDaNhPNwT8)
article on occipital nerve block from Johns Hopkins
http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/headache/procedures/greater_occipital_nerve_block.html (http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/headache/procedures/greater_occipital_nerve_block.html)
and one on radiofrequency ablation. This site has also info on nerve blocks==
http://www.medcentral.org/main/RadiofrequencyAblation.aspxl (http://www.medcentral.org/main/RadiofrequencyAblation.aspxl)
Capt Deb
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I had nerve block injections 3 times all to no avail. They didn't hurt at all due to the anaesthetic
laz
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That's strange that you didn't have pain because of the anesthetic. I had Lidocaine with my blocks and still felt them going in. I wonder what the difference is. It might be worth discussing with our doctors.
Mei Mei
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MeiMei.....When i had my nerve blocks they gave me some thing that made me forget the whole ordeal for about 15 minutes..can't recall any thing after they started the IV till i got to recovery room all of the sudden i am drinking a coffee and eating a muffin ;D
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Yay! That's what Money Mag Survey said: NH is the best place to retire in the US. What am I doing here where they give nerve blocks with nothing to help you out? :-[
NH is the place to go! 8)
Mei Mei