ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Kaybee on May 22, 2010, 07:51:07 am
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A colleague of mine had AN surgery about a year before I did, making her approximately 18 months post surgery. I have been blessed not to have headaches following my surgery so I have not read too much on this in the forum. My colleague has however. She has not been able to get much relief and is currently experiencing severe pressure in her head especially when she coughs or sneezes. If anyone else has had this, were you able to get any relief? If so, how? I will try to read through as much of the headache threads this weekend, but if anyone has any advice, I'd love to share it with my colleague. I think she was having an MRI last Friday. Sorry for the vague question--if she has any more details, I will post them to this thread. I guess she is curious if it is common to have this severe pressure so many months out. And what members are doing/have done to combat it.
Take good care and thanks!
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Oh, I do know that she had the retrosigmoid surgery.
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Your colleague needs to start keeping a daily headache journal and seek out a headache specialist instead of relying on her surgeons for headache treatment--they are not headache specialists--they just scoop 'em out. A headache journal, which includes foods she is eating and weather patterns, the kind of sleep she is getting, and emotional stressors, can help the specialist immeasurably. It usually takes a while to get in to see a headache specialist (preferably at a headache clinic)and in the meantime she can do research on foods and supplements with anti-inflammatory properties. Also icepacks!! They are really good at sucking the inflammation out of those nerves that are firing. Come to think of it, I think I'll head to the freezer for min right now because I woke up with a doozy of a brainwreck.
Hope this helps--your friend really needs to get herself on this forum. She is not alone.
Hugs,
Capt Deb
resident headache expert
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Yes, sneezes trigger a doozy of a headache for me and I immediately take a couple of Motrin and rest for half an hour and it goes away. My doc says this has to do with the Dura. My headaches are every night and sometimes, though rarely in the the daytime. I have them at the top right corner of my head and I have a stiff neck and stiffness in the occipital area. I am currently getting Sub Occipital Massages twice a week . It softens up the stiffness for a few hours and then its back to stiffness again. The therapist says that it takes time to train the muscles to relax and that they are really tense from being cut in the surgery.
Hope this helps.
Mei Mei
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Mei mei, I hope you are taking those Motrin with some food to protect your tummy. Eating a few graham crackers gives the Motrin something to "bounce" off of. Even washing down the Motrin with some milk is better than nothing.
Capt Deb
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Capt. Deb. My headaches mostly come in the middle of the night so I take the Motrin with a Tylenol buffer with water next to my bed. I didn't know this. So far my tummy's been OK. I'll bring some bread upstairs to bed with me tonight. I don't have any crackers in the house. THe sub occipital and neck massages loosened things up temporarily for a few hours. I'm on the schedule for twice a week to break up the knots that have developed in the base of my skull (sub Occipital area) and neck on surgery side.
Thanks as always for the tip.
Mei Mei
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I have the same headache and pressure and am 18 months post surgery. I call it a vice grip headache that never goes away :( No drug has yet to take away any of the pain but my neurosurgeon did tell me to stop taking
Ibuprofen because after taking so many for well over a year, they were actually making the headaches worse. I stopped taking them, but the headache didn't stop either. The only thing I have found that helps after a sneeze is ice. I have 4 ice packs from walmart and use 2 at a time. One on top of my head and the other on the back of my head , sitting in the recliner. I usually need to get the second set before it feels better.
I feel her pain :) I never heard of an AN tumor before 2 years ago and now I know 5 people through friends , that have had them removed and all with different results. I have balance problems and the CHRONIC head pain. I don't think pain is even a big enough word. She is not alone, but it feels like we are since nothing helps.
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I forgot to say, I have tried acupuncture, chiropractic and have just had my first cranial sacral massage and was also told it would take up to 5 massages before the tissue could be broken up. I am willing to try anything , except more useless seizure meds at this point.
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Dear Kzanana,
I'm sorry for your suffering. Hang in there. It's an awful curse to live with and want to escape it. Keep trying with the massages. That's what I'm doing. I hope they break up the knots that are in there for good.
The drugs really worry me. I don't want to do damage to my organs. It's a genuine concern. Taking this much meds are not good for you.
Mei Mei
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A lot of anti-seizure meds work really well, but most people give up on them before they have had a chance to work. I takes 2 to 3 months for them to be effective and they need to be titrated (taken in small doses and very gradually increased) slowly.
Capt Deb
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I also have gone through the ringer with post-op and pre-op headaches, but in my opinion your co-worker will want to talk to a headache specialist, or someone who has had experience with AN's and post-op headaches. There are many helpful medications and treatments out there, but she will have to find out what is best for her. It can be a long process, but there is help and she will find relief.
I feel her pain and you are a good friend, helping her look for some answers.
Please let us know if you or her have any more questions,
liz
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I just saw this on the web and thought I'd post it for everyone. It says that Post op headaches start several months later:
http://www.cs.umb.edu/~dqg/newone/headache_stats.htm
Mei Mei
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I read this article years ago. I love the part where it says "watch out for bone dust" like I'm supposed to lay there with my Dirt Devil hand vac while I'm intubated and anesthetized within an in of my life! Sorry, but I'm wide awake at 3:00 AM with a headache and raging back pain.
The best thing I've read on post-op headaches was the one by Dr Leonetti in the last issue of the ANA newsletter. I was privileged enough to hear the lecture in person at the last symposium. Anyone with post-op headaches should start saving their money up for the next symposium in Cincinatti in '11. There are usually no less than 2 headache workshops there. For $10 you can get CD transcripts of the workshops from the ANA. I gave a copy of the article to my neurologist and he now realizes how there is a Chinese menu of causes for these suckers and that they probably stem from more than one issue.
Hope you are all tucked into your wee beds and fast asleep--I know I'm not!
Capt Deb
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Hi ye all,
Post op headaches - yukarooney! Sorry to hear that things aren't getting better for you Deb. Mind you, we are in the same club. I'm sitting at this pc with a doozie and its late and I'm tired and feel rotten.
Now, for the posters who have been taking anti inflamatories, Deb is right - they destroy your stomach even if you take them with food. Whilst that helps you also need a script for drugs like Losec which stop reflux and protect the stomach. I've been taking Neurontin for around 10 years now - sorry not much consolation but although my wrecks aren't as bad as Deb's, they are pretty rotten. I did stop taking the neurontin for a while to see if they had an effect and boy do they help. Without the drug, I wouldn't be able to work.
Headaches are different for everyone. I have been told that they go away after 6 months post surgery - mmm, wrecked that statistic! Anyway, keep trying different things, something may help. There is also further surgery available - forgotten the name but do a search on Janet coz her's worked for her.
Laz
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Laz is right about the Nuerontin (generic name gabapentin.) I'm about an inch away from gong back on it for my back pain as well as my headaches. It has fairly few side effects, a lot less than Topamax, and the toicity factor is relatively low. It was the first thing my headache specialist put me on.
Capt Deb
(PS-- Hi Laz, my dear friend! Big kisses on your big sweaty forehead!)
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Headache so bad by as early as 9 pm last night that I almost went to the ER in an ambulance but toughed it out. Took 4 Motrin, 2 Tylenol, added Aleve to the Mix, and waited. then two hours later added two more Motrin. Finally it eased up. Can't wait for this neurologist appointment on June 8th. June 14th is for the BAHA at Hopkins, but am going to hold off on that with all these headaches I just don't want any more surgery and do as little invasive things as possible right now. Just rest and take care of this headache issue. Have to get to the bottom of this. They have to help me and all they offer me at Hopkins right now is the BAHA.
Mei Mei
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Mei Mei ~
I'm so sorry to learn about these horrific headaches you're experiencing. I think you're wise to postpone the BAHA surgery for now. Of course I hope your appointment with the neurologist will bring you some answers. Meanwhile, for what its worth, know that you'll be in the thoughts and prayers of many, including me.
Jim
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Thank you so much, Jim. That is so nice and means a lot to me. They always come at night and it is approaching dinner time soon so I am not looking forward to this. I can't wait for June 8th and meeting this headache specialist in Washington. I just don't want to live on medicine all my life. I didn't before the surgery.
Thank you everyone for your support and thoughts.
Mei Mei
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Thank you Capt Deb, Mei Mei, kzanana, Lizard, and Larry for sharing some stories. I wish you all some relief and soon! I do not have headaches but do have facial paralysis so I truly understand the number this surgery can take on us! I will pass along this and other information to my co-worker. I have lunch with her on Tuesday and will also encourage her to join the discussion form. Happy Memorial Day weekend!
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Mei Mei, have you ever tried an occipital nerve block? Or Botox injections? Both are pretty pricey--I couldn't afford either until I got medicare with my disability. I had a $5000 deductible, which is kinda like having no insurance at all unless you have a catastrophic illness. Botox wasn't an option at all at $1200 a treatment and my insurance would not even consider covering it.
Capt Deb
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Thanks, Capt. Deb. No, I've never had an Occipital Nerve Block. I went to my primary care a couple of months ago and asked him if he thought I should get one and he massaged my occipital area to see if it would refer up to the top of my head where I was having my headaches. It didn't refer so he didn't think a nerve block would help me, but ever since that day, my occipital area has been hurting like hell and I think he damage it when he pressed so hard and so has my neck because my neck was OK and now my neck has been in pain ever since the day he pressed on that area.
I went for Chinese Accupuncture today with electricity and a hot lamp ...I just wrote about this on the other post. I was GREAT especially the massage. I went because I complained to my father's home health aide that I had two more killer headaches last night. She brought me there after work. I have good insurance even after retirement. $5 copay. I feel bad about your situation about your copay. Something has to be done about our insurance plan. It's not equitable!
I have the Neurologist Appointment on June 8th I am anxiously awaiting that and what input he has for me. Whether I should take Flexeril. I have Pins and Needles on my neck and occipital area. and knots as well. I also go to PT and she is massaging it too at twice a week. The knots have to be worked out somehow. It's got me so tense. Maybe I should get a bite plate for my teeth. I keep telling my tongue to relax beforee I go to sleep, but I'm sure it ends up on the roof of my mouth tense as anything. They tell you this in Yoga to relax the rest of your body, relax your tongue......
Waiting to hear from you.
Mei Mei