ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Janet on April 27, 2009, 09:54:46 am
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Hi All,
Thanks for all of your well wishes regarding my recent surgery to fix head pain and headaches. It has been a week since my outpatient surgery by Dr Ducic at Georgetown University Hospital. It is my 2nd to address daily nerve type pain. The 1st was a year ago and it helped dramatically. I still had a spot that I could control with daily Tylenol and an occasional Maxalt. This recent surgery was to fix that spot that started in the back of my head and radiated behind my eye.
The problem spot was at a junction of the occipital nerve, lessor occipital nerve and an artery. I could pin point exactly where the pain was coming from. He found that the nerves crossed over the artery at this spot. The function of these nerves is sensory, meaning that they cause pain and feeling. They do not have anything to do with movement. He opted to cut the nerves, bury them in a way that they won't cause future problems and remove the artery. I knew that he would either rearrange or cut depending what he found. I was happy that he cut them as I wanted this whole ordeal finalized.
I feel numbness on one side in the back of my head but it feels wonderful. The best part is that my eye feels so calm. Yesterday, I did a photoshoot in my studio and went for a walk. I am avoiding lifting any thing heavy. Yesterday, I took one dose of Ibuprofen for some slight soreness below my incision. I have not taken anything today and do not feel the need to take anything.
So far, so good. (Actually, excellent.) I will keep you posted as I want to give you an honest objective account of how this type of treatment is working (or not) for me.
Janet
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Hi, Janet ~
Congratulations on the successful nerve surgery that has vanquished your headaches! I admire the way you researched and found a doctor that could help you. So many suffer with headaches - for years - but now, you're no longer one of them. Your example is admirable. May you remain headache-free! :)
Jim
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On ya Janet,
Your procedure/s is current to me because it's an option down the track.
I'll email you shortly
cheers
Laz
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By the way folks, if anyone is wondering about Janet's photography skills. I can highly recommend her. When i was lucky to meet Janet a couple of years ago in sunny Seattle (weather was fantastic when i was there, don't know what people go on about), she gave me a fantastic photo of Seattle at night which i have hanging on my study wall. I reckon it's going to be rather valuable one day.
i would hate for these headaches to get in the way of your wonderful skill Janet so your news is really fantastic.
Hope you don't have to cut your ear off to be recognised though (lol)
Laz
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Congratulations Janet! I'm really inrterested in your outcome(s).
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Me too!!
Today is not a good day for me. My headache started last evening and today I cannot get it under control. Its the pain behind my left eye that drives me insane :'(
Anne Marie
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Me too!!
Today is not a good day for me. My headache started last evening and today I cannot get it under control. Its the pain behind my left eye that drives me insane :'(
Anne Marie
*runs in, gives a BIG massive healing huggle to my dear just north of da border!* :-* :-* :-*
Anne Marie, pls hang in there. I'm thinking of you!
xo
Phyl
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Laz, Nice to hear from you. I am happy to know that you still have my photograph and it honors your wall! Thanks for the encouragement.
My website is www.janetsherwoodphotography.com The photo of Seattle is there.
Camera equipment is heavy and one of the reasons that headaches just are not compatable with my lifestyle. I photographed the recent Inauguration and carried 2 cameras with big lenses from 3:45 am to 5:30 pm in the freezing cold.
Thanks to all for your encouragement. What a wonderful group you are! I wish I could go to the ANA Conference this year. My HS reunion is at the same time. I will have out of town guests. Maybe next time.
Anne Marie I think of you often and pray you will find some relief soon. Have you tried Maxalt 10mg MLT? That usually helped my behind the eye pain, if I took it soon enough.
Best Wishes,
Janet
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Janet,
Your photography is beautiful. Do you use film and a dark room, not digital? Some of the pictures, such as Girl Picking Tomatoes, are like paintings. Very nice light and subtle color.
Thanks to Laz for calling attention to it.
Steve
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Thanks Janet I'm going to talk to the pain Dr about maxalt if I ever get the appointment!!! I can't complain because my FIL is receiving very speed medical care.
Anne Marie
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Janet,
So happy to hear you're still ecstatic about the results!! I hope you have put this chapter of your life behind you. You have to be jumping with joy.
I'm not!! I was thinking out loud with my kids a couple of months back. What is the worst think that could happen to Daddy at this point? I said someone plowing into the back of my truck. Well don't you know w/my luck of late that very thing happened yesterday morning? I was taking my three little ones to school and I was sitting waiting to take a turn into the school parking lot and wham!! I had instant neck and head spasms. They were killing me!.....and I was having a pretty good morning. I was trying to attend to my crying children while in agony. Anyway a friend of mine was right there dropping her kids off. She took my kids to her house and I went to the hospital for a routine x-ray. They didn't see anything out of the ordinary so they sent me home. It got a lot better until yesterday afternoon things started to rear their ugly heads. Needless to say my neck and head are smarting. Doubled my dose of muscle relaxants and that helped but still....I hope this doesn't set me back we shall see.
I hope my Drs can narrow this down like you have Janet and find my hot spots. They seem to be everywhere. Right now I'm committed to going the drug route and see how that goes but I'm going to keep it on a short leash. Then I'll move forward from there. I guess that would be testing to find my hot spots??? Joe
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Wow Joe,
Take care of yourself. How bad was the vehicle? Very importantly your little babies are they all right?
Anne Marie
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Hi Anne Marie, My kids were fine just shaken up. If it weren't for my "condition" I would have been achy but okay. Right now I'm medicating and icing and dealing.....I'm fine. I don't know what I'd do if I medicated and it didn't work. I think I'd go out and score some heroin.
How are you doing? I don't know how you stand it. Anything looking promising on the treatment horizon? I'm so busy w/work I haven't had time to do any research. Janet and Bridgie have been very helpful. I just have to get up to speed and get the info I need to get to the bottom of this black hole.
I'm hoping this pain is temporary. It seems to have aggravated existing pain and added spasms in different areas of my neck and intensified my headaches. Variety is the spice of life they say! >:( I'm keeping a daily journal so we'll see how it goes. Just what I needed.
I'm praying for you to find something for your pain. Hang in there. Joe
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Steve, Thanks for your kind comments about the photographs. I am shooting digital these days. I still have a darkroom and some of the B&W photos on the site are scans of silver gelatin prints. It has been a year since I've developed in the darkroom. I do all my own digital printing and use Photoshop which allows more control than the darkroom ever did.
Joe, Glad to hear your children are OK but I am cringing at the thought of you getting whiplash on top of your other pain and headaches. Tough break. Hopefully, this won't set you back for too long and you will get back on track with the benefit of your new treatment. I hope you have some help with all your obligations, so you can take care of yourself.
Janet
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Hi Janet,
I'm doing okay. I didn't think this would set me back at all but it has I hope it won't last long. All three of my kids have strained necks they're sore as well so all of us are feeling the effects. It took a day or so to really kick in. I'm as stiff as a board right now. When I bend my neck forward just slightly I feel the pulling in my forehead. I'm as tight as a drum. I'm hoping it will heal and not cause any further problems. Nothing I can't deal with however no over the top pain.
Going for my 2nd round of Botox next week and I guess I'm going to be put on Cymbalta as well. I've been reading up on it. They us it for diabetic nerve pain and Fibromyalgia. Not sure if I'm sold on this stuff but I'll give it a go.
I feel better with the Lyrica but nothing dramatic yet I'm on a low dose. We'll see how it goes. I'll keep you up to date you do the same. Joe
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Janet, I add my best wishes for your rapid recovery from "our pain". And I THANK YOU for finding Dr. Ducic with his novel approach to resolving the pain. I am fascinated with his approach, and I hope it really works for you. My trigger points are exactly where his surgery happens - I know it is right on that nerve! I am also going to Joe's Dr. Feel Good, working with the drug route. And I hope to start a year of Botox within a few weeks - waiting on results of the Insurance battle. This site is so great, because I get reenforcement - knowing that I am living in pain with fellow sufferers. It takes me past the moments when I wonder if I am a Hypochondriac. But I am also hopeful that the drugs will help me resolve the pain. I'm not looking forward to surgery any time soon.
Janet: All my best to you in your recovery. I will watch for your future posts and hope for excellent progress.
Joe: Take care of yourself and your babies. I so relate to the comment regarding 'helping your kids while in Misery'. Pain & Fear of more pain keeps me from doing lots of things. A Quiet lifestyle helps me stay pain free, but it also gets lonely. Summer is coming, I would love to be able to go enjoy it with my grandkids!
My prayers & good thoughts go to you all. Thank you for your courage & hope. Wishing everyone better health tomorrow.
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Pattycake you are not alone. This site has helped so many and will continue to do so. I'll compare notes on Dr Feel Good. So far no dramatic improvement but slight improvement........as I sit here w/an ice pack on the top of my head wrapped with an ace bandage and a wrap around my neck. I scare the kids sometime. Learning to med up at the first signs of trouble and I just managed to stay ahead of it tonight. Usually I'd wait until 11pm to take my nightly meds but I took them an hour early. I'm learning. I used to wait too long trying to wait until 11 I'd end up in a complete meltdown.
W/all the meds I'm taking I really don't know if this Lyrica is working. I feel like I'm just managing it better. I know mine is definitely worse at night and I'm just staying ahead of it all. I'll give it time. The Botox was awesome. Took my daily spasms right away and Harvard Pilgrim did cover it as well as the Lyrica. They should for what I pay them. I hope you win your battle with your insurance company. Medicare is paying for it so most should.
Got your emails I'll reply shortly. JOe
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Hi Janet,
Can you tell me more about your surgery? I have nerve pain all the time and though I can hardly imagine more surgery I'd like to understand my options. So glad it helped you. BTW, I was on Cymbalta for about 3 weeks, didn't work, now I'm on Lyrica and the jury is still out on whether it will help.
Best,
Marci
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Hi Marci,
Has anyone been able to tell you which nerve your pain is coming from and give you an explaination why they think it is that nerve? I noticed you had a trigeminal neuroma. If your pain is coming from your trigeminal nerve and is considered trigeminal neuralgia that is very different. The surgery I had would not fix that. My pain was coming from irritated nerves that are between the skin and the skull. Sometime these nerves can get trapped in the scar from craniotomies. Nerves are located in particular areas and pass through muscle and near arteries that can irritated them as well. This irritation can set off a series of complicated physiological responses which cause severe headaches that resemble electrical shocks, tension headaches and migraine-like pain, especially behind the eyes. There are also true migraines which can have similar symptoms but are not helped from this surgery.
If the source of the pain can be identified, the surgery simply aims to correct the problem. How the problem is corrected depends on what the problem is. Scar neuromas tend to be a common complication of AN surgery. It is just removing the neuroma and fixing the nerve ending in a spot that won't cause future problems. Sometimes the occipital nerves are the culprit and the source of irritation is addressed. This is not just a post AN problem. It is outpatient. The biggest problem is finding a surgeon that is specialized, experienced and qualified.
Janet
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Janet:
Great news that you had surgery to address the headaches. I hope this surgery helps put an end to the headaches and that you no longer have the need to take meds.
Your photos are beautiful. Thanks for sharing.
Syl
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Janet,
Thanks for the excellent explanation. My problem is that the trigeminal nerve was damaged when they removed the tumor. It was fairly large and at least one branch of the nerve had to be cut. The question at this point is whether it will improve over time or whether I'll have to live with the pain forever. I can handle the numbness if it's permanent, but the pain can be pretty bad. Hoping that the newest drug (Lyrica) will help. I can't yet tell. So, yes, a completely different issue than yours and likely one not surgically resolvable, alas.
Marci
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Marci,
Try Googling
1) trigeminal neuralgia
2) occiptial neuralgia
Which neuralgia best describes your symptoms? It is possible to have both or either since you have had both a crainiotomy and trigeminal nerve surgery.
You might want to check out, The Skull Base Institute. They treat trigeminal neuralgia surgically. They also treat skull base tumors. They review cases for treatment of trigeminal neuralgia, if you send them your records. Might be a cheap way to get a 2nd opinion.
Hopefully, the Lyrica will kick in soon and you will get some relief!
Janet
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Love this International Headache Society web site. I looked up both Trigeminal and Occipital Neuralgia and it seems I have neither. No stabbing pain anywhere. Mine is gradual like the slow tightening of a vise. ;D