ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Nickittynic on January 31, 2010, 02:23:52 pm
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I am 4 months post op and still having daily headaches, which over the last month have actually gotten worse instead of better.
I had headaches for most of the year before surgery (my only preop symptom - I thought they were just stress headaches until they landed me in the ER and they did a CT/MRI), and survived on tylenol and coke (caffiene). After surgery I had a prescription for oxycodone 5mg, and took it every 4 hours with 1000mg tylenol for the first month, until I weaned myself off it. I still had headaches, but they were manageable. When I *still* had constant headaches at 12 weeks post-op, and tylenol didn't help, my ENT prescribed Motrin 800mg around the clock. It didn't help. In the last month things have gotten worse, and tylenol and motrin don't work. I've given in and taken the oxycodone a few times if for no other reason than to try to sleep it off for awhile. I've seen two neurosurgeons and they both say it's normal since I have no symptoms of a CSF leak.
When are headaches no longer normal? This morning the vice-grip feeling on my head had me in tears. I'm supposed to be finally returning to work tomorrow night, and can't be sitting around crying or taking oxycodone to sleep. What can I do and who should I talk to since no doctor (neurosurgeon or GP) seems to care?
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Hi, sorry to hear of your headaches and cannot offer much hopefully someone else has a better answer for you I to have suffered daily headaches it will be 7 months soon and the surgeon's do not consider it a problem. My GP put me on vicodin helps a little but it is still constant and the morning hours are the worst saw some posts with different types of medications have to ask your doctor to prescribe something different for you.
Hoping you can find some relief.
Pat
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Hi nicky,so sorry to hear about those horrid headaches.Is there any way you can delay returning back to work.Please get back on to the doctors and dont give in.Not much help i know but my thoughts are with you.
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Nikki ~
I'm sorry to learn that your headaches are unrelenting, the intensity is increasing and they seem to be untouched by drugs. Obviously, I can't tell you the cause of these headaches but AN surgery patients that have the retrosigmoid approach occasionally have complaints of headaches similar to what you're experiencing. Sometimes this is caused by microscopic bits of bone dust getting into the skull while it's being drilled and settling on hyper-sensitive nerves. Operating techniques have improved drastically in recent years and although I underwent retrosigmoid AN surgery, I didn't suffer any post-op headaches. I had asked my neurosurgeon about the possibility of post-op headaches and he explained that his AN patients "didn't have post-op headaches" because he used a form of 'sticky tape' around the incision that 'caught' flying bone dust as he drilled into the skull and he added that he was 'fanatic' about using suction during the surgery. His assurances were valid and I did not develop headaches following the surgery. Sometimes your positioning on the OR table during the long surgery can generate headaches, as has occured with some of our other members.
I wish I could offer you a quick and easy solution to your headache problem but, unfortunately, I can't. Returning to work under these conditions (debilitating headaches) may simply not be feasible. You may need to consult a pain management physician to seek relief. However you find it, I hope it comes soon.
Jim
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I wish I had answers for you, but unfortunately I don't. We had surgery at about the same time (9/24/09 for me) and we seem to be going through some of the same things. I am also suffering from terrible headaches-1-2x'x a day. I live on Motrin and Excedrin, that's my cocktail. I got my neurotologist to send me for a cervical mri because even after getting Botox injections from him (I had relief for 1-2 weeks), the headaches came back. Mri shows lots of cervical misalignment that can cause the muscles to spasm and create headaches. My doctor suggested accupuncture, but I decided to try a chiropractor first.I went to my husband's chiropractor, who gave me a complete evaluation and he feels he can help me. On my second visit he manipulated my neck and that day I only had 1 mild headache. So I will try to be optimistic and hope this helps and if not maybe accupuncture or a headache specialist. I hope that maybe there is someway for you to delay going back to work until your headaches are under control. I cannot imagine having to work right now,( although I do go to school part time for nursing). Maybe you can try a chiropractor or an accupuncturist and see if that can help you. I feel your pain! :(
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Hi Nicki,
Sorry to hear of your headaches and I wish I could tell you they get better. I like many others have suffered for long periods of time. Read the post on headaches and my Neurologists can not say exactly why but....
Go to Neurologist headache specialists, try physical therapy from the neurologist office, with massage and exercises. Different drugs work for everyone, tylenol and oxy worked for me alittle, but.. for only so long then they got worse.
My neurologist said the best is Depakote and Tizidadine at night then another migraine drug when headache starts (imitrez, topomax...) neither worked for me 13 months later and now have botox in 2 weeks.
I think your symptoms are still early and they may get better, take oxy right away when you feel the tingling? How is your stomach? I have been on Omeprazole for a year!
Good luck and hopefully you have supportive people to work with because these headaches are like no others!!!!!!!!!!!The best of hugs and luck in figuring it out.
Belll
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Thanks all for your kind thoughts and suggestions! I wish I could postpone my return to work but at this point it's already been postponed a few months and due to all those issues I've been without income for two months. Disability's a :o >:( :( :-[ :o!
Jim - I wish I had your surgeon. Mine said pre-op that I would have a "1 in 3 chance of chronic migraines" after surgery. Like it's just some normal thing that's "oh well, too bad".
Ombrerose4 - A chiro is a good idea. I have one that I haven't been to since my daughter was born (went when I was pregnant for better baby positioning). My mom's been suggesting acupuncture, too. Maybe I'll try that combo.
As for today, a percocet and a 3 hour nap got it back into the 'tolerable' range. Wish me luck for my first night shift tomorrow!
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Good luck! We will all be hoping you have a headache free shift.
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Nicki:
I started getting headaches 2 wks post-op. Every single night or early in the mornings, I would wake up w/ pain. Sometimes it was mild & other times it was debilitating. Finally after 10 months I went to a neurosurgeon who put me on Pamelor, which got me off Tylenol. Pamelor did help a great deal. I wasn't getting headaches every day, but they were still hitting me 3 or 4 times per week. After almost 1 year of taking pamelor, I decided to get off of it because I hadn't noticed any improvement in some months. That was about 3 weeks ago & so far, the headaches have not worsened.
Have you tried applying heat or ice to the neck? I use a heating pad, which helps a great deal.
Let us know if you try chropractic & if it helps.
Syl
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Hi Nicki,
So sorry to hear of your pain, especially knowing that you have to return to work as a nurse which we know is no easy ride in the park (maybe night shift isn't so bad).
Headaches are the ONE thing I DON"T suffer from, thank God- I got too much other stuff on my plate. You had a whopper of a tumor, so it will just take a longer time to get back on track.
As I've said before,it is a part to full time job just taking care of ourselves after surgery.
Advice for the headaches????? Just gotta keep trying different things until you find something that DOES help. I've heard Lyrica,(also helps with sleep), neurontin, even elavil which as you know is an antidepressant too. Excedrin gives you that punch of caffeine/aspirin/tylenol which helps many, but then you don't want to overdo the aspirin. There is also aspirin free excedrin. Maybe "pop" an excedrin at the beginning of your shift.
My acupuncturist cured a woman of her many year history of headaches. She referred to it as "face pain." Never got relief with meds. The acupuncturist did his pulse analysis and told her she is experiencing migraines, which come across as head pain. (trigeminal nerve). He was correct! Her headaches were gone in a couple of weeks with acupuncture and chinese herbs.
I'm fortunate to live near this guy who works wonders, and he is in a small city (Poulsbo) in WA. My face is slowly improving- it just takes a long time.
I would recommend acupuncture (traditional chinese type that also treats with herbs). Sounds like $$$$ is tight and you may not be able to afford it- hopefully your insurance will give you at least a couple of visits to see if it works.
Hang in there- there is so much on your plate. I feel for you- a mom/nurse/wife dealing with all this.
Let us know how things progress.
Maureen
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Good luck on your first day back. A lot of us have tried any number of things -- you just have to keep experimenting until you find something that will take the edge off. Most of us with headaches do see some improvement as time passes, but it's hard to notice the improvement in the moment. Drs. Francis and Tamargo were my surgeons also. Dr. Francis was very helpful to me post op. You can pm me if you'd like.
staypoz
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Nicki,
I literally feel your pain. I am off work on disability because of of headaches and facial pain. I was suppose to start a gradual return to work program a week today, but there is just no way I am able to. You have to see your doctor. Try meds, try massages, try physio. I am speaking from experience. I ended up in a terrible place after I returned to work following surgery. Even though I was taking medication, when I came home from work I would totally withdraw from my family. This went on for 19 months. My husband and sons were very fearful for me. It was a very frightening for all of us.
Be your own advocate. Capt Deb has posted some informative links, read them, print them off and visit your doctor.
Anne Marie
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Nicki,
Sorry for your afliction. I had middle fossa 9 years ago and have chronic headaches every day. Most of the time its manageable (iguess I have got used to it in some way) but about 25% of the time, I feel like kicking the fence down. (don't like sayiong kicking the cat coz I'm an animal lover but also don't have a cat! Anyway, back to helping you with youir issue.
As for drugs, tylenol is a very low level pain reliever. The next level are the anti-inflamatories - the names are different in Oz to the U.S but Ibuprofen is one. Its a very commonly used one but a warning, these anti inflamatory drugs will cause stomach problems, its a will cause not a may cause. Taken over a long period of time, they will burn the linimng of your Osophegus and may cause an ulcer. This effect can be offset by taking zantac or losec but youi will be on those drugs for the rest of your life to protect your linings. They are harmless as my wife has been on it for ages..
Then you have the more serious drugs like lyrica or neurontin. I'm on neurontin and it does help a little (takes a lot of the edge off the headache). No noticable side effects and i've been on it for about 7 years now.
You also have the option of botox and nerve blockers and also further surgery.
Read up the various comments in the headache section. there is a lot of useful info there.
laz
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Dear Nicki,
I'm so sorry to hear of your headaches. Did you go to that UMD neurosurgeon for help with the disability?
Somewhere on one of these posts on headaches, but I don't know where I talked about going to a Physiatrist...a MD specializing in Physical Medicine. She gave me a prescription for Topamax that worked wonders for my headaches and my sleep. See if you can get a RX for this and if it helps you. It really helps me. I've been taking it for five years.
Since the AN surgery on Jan 12 I have had headaches that are managed by Tylenol Extra Strength and a terrible pinched nerve in my neck. My Primary Care gave me several samples of a patch on prescription that has Flexeril in it and I slap that on my neck ... that helps along with
Asper Cream.
I was waiting for my post op visit to get a clearance to go to the Accupuncturist. I have the name of a great on in Rockville. Where in Maryland do you live? Is Rockville convenient for you?
Sincerely,
Mei Mei
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So sorry to hear of your headaches I too am suffering from them along with severe tinnitus like you the doctor's just don't seem to care or want to understand post-op complications that arise from this surgery. Hoping you can get someone to prescribe something that will work for you alot of people are saying that Topomax works.
Best Wishes,
Pat
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Nicki,
One thing that I learned early on in this journey is that I had to stand up and to be my own advocate. The doctors all said that I would be back to work after about 6-8 weeks. Because I had a heavy travel schedule, they stretched that to 3 months. Everything would most likely be a walk in the park and I would be chomping at the bit to return to work.
Well, my reality was different. My headaches were so incredible that I just couldn't function. I had to be the one to step up before my return to work and say that I couldn't do it. I had to go on disability, for what I thought was a short time, and it was hard emotionally. Well, it is now 15 months and I am still on disability due to headaches. I can't imagine what shape I would be in if I hadn't pushed for what I knew that my body needed - more time. You have to be the judge of what you need and talk to your doctors to get their suport.
I still don't know how much more time I will need. Over time, I have become more accepting of the fact that it isn't a short timeline, but I am not resigning to long either. I will do everything that I can to heal and see where this "not chosen" path takes me.
I have just started taking Topamax, so we'll see how that goes. So far it is ok, but last week I abruptly had my gallbladder removed (to prove that we aren't given a pass on further health issues after having an AN). So my system is still full of anesthesia, probably a good time to switch meds because I'm screwed up anyway ;D
Hang in there,
Samantha
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I have only read posts that talk about post op headaches..Is there any info on post Stereotactic surgery? I had my procedure Aug 27 2009 and everything went well. Jan 12 2010 I had an MRI done due to severe head pain in the back of my head on the right side. I was put on steroids for the 3 week course and again everything was good.
Now I have constant severe head pain on the left side of my head. Sleeping is impossible and I am getting maybe 3 hours of sleep a night. Is there any difference between post surgery and post Radiosurgery? Who do I go to for help? Neurosurgeon, ENT or a General Practitioner
Gary
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I would go to a neurosurgeon to do a work up. You had an MRI in Jan. Go back and follow up on this film that was already done. Something is definitely wrong that you are having these headaches on both sides. Did they check your neck as well?
Mei Mei
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Hi Nicki,
I had the same surgery you did, approximately 2 years ago. I had horrible headaches for about a year after my surgery. I tried just about every medication on the list and nothing seemed to cut thru the pain. Finally, I was prescribed Celebrex. It is the one thing that does work for me. I take 2 200MG capsules per day. I still get headaches, but nothing compared to the pain I was getting last year. Now I take the celebrex and usually 2 tylenol per day and can keep headaches at bay. I have tried to cut back and take 1 celebrex per day, but the headaches immediately come back.
Celebrex is not typically prescribed for headache pain and my neurosurgeon said "i dont usually like to prescribe this but it is one of my last resort medications". I'm glad he did.
I hope you find a solution soon. I can relate to the pain, it changes the quality of ones life to be in continual pain and have to function.
Good luck to you!
Kimberly
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Dear Nicky,
I put in a call to our Neuosurgeon in common Dr. Tamargo this morning at the urging of all my friends even though I'm going to see him for my Post Op visit on Monday. My headaches are every morning at 3 a.m. and are excruciating. I take 2 Tylenol. The Topomax that I take before bed doesn't control them. I didn't have these headaches before the surgery. They start at the neck and shoot up the back of the head and won't go away until I get the Tylenol and get back to bed.
He called at 5:30 and told me to take 2 Motrin or Advil four times a day to prevent the headaches and let him know what happens. I found my airplane neck pillow and am going to try sleeping with that tonight to immobilize my neck to see if that helps the situation in getting through the night.
Hope this information helps you.
Take care,
Mei Mei
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Thanks everyone!
I have an appointment with the ENT half of my team coming up soon and will see what he can tell me, but I'm also going to try to get a neurologist. My headaches aren't in the neck/back of the head like most people's seem to be, but are more in my temples and almost like migraines in that they make me nauseous when they get really bad. Luckily "really bad" is only maybe once a week, but still pretty yucky.
The schedule is so hectic right now with me back to work (which is going surprisingly well, btw!) and my husband back to school at the same time, but I'm going to try to see what I can work out for chiropractor and acupuncture appointments soon.
Mei Mei - I did go to the UMD surgeon. He wasn't terribly helpful but through another turn-of-events I finally got my disability approved (and just got my checks for the back-pay I was owed - woohoo!). I hope Dr T has some good news for you! I'm up to taking 4 motrin (800mg) and still doesn't do too much. :p
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Nicky, Dr. Francis will listen to you. Although he did not offer me much in the way of solutions, when I talked to him about my intractable headaches he was genuinely concerned about me and the pain I was enduring. He encouraged me to be an advocate so that more research can be done to learn what causes the post-op headaches and what can be done to prevent them. Our little chat empowered me to be more aggressive in seeking relief from pain doctors and neurologists.
The frequency and duration of the headaches begin to change the further away you are from your surgery. Good luck to you!
staypoz
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FYI Nicky,
The Motrin didn't help my headaches. I still woke up at 3 a.m. with the killer headache and had to take the Motrin to get back to sleep.
CONGRATULATIONS on the disabilaty and the checks. Keep them rollin' in!!!!
Mei Mei
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To everyone suffering these rotten headaches. I have found that, and this is based on my experience only, neurologists, neuroserurgeons and ENt specialists aren't very strong on headache relief. In fact they tend to clutch at straws as to cause.
Best results are from Pain management clinics. they usually have more experience and exposure to headache pain than the others mentioned above.
Laz
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Thanks, Larry, you're right on about the comment on Neurosurgeons...
Nicky, I went to see our Neurosurgeon Dr. T yesterday for my 6 week post op visit and brought up my neck pain and head aches and he just said to keep taking the Motrin four times a day for 2 weeks. He seemed to think that these headaches would resolve itself in two weeks, but I've been suffering with them for a month and had a killer one again last night that scared me. He's so sure that this will all end in two weeks.
Take a deep breath and I sure hope it does. I'll keep you posted....
Mei Mei
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MeiMei - I will keep my fingers crossed for you! I was told the same thing at my six week appointment. :-\
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Hi Larry,
I am sorry you and others have had bad experiences in regard to feeling that the neurotologist and neurosurgeon didn't seem to care about your headache problems. I am fortunate that both my doctors have been extremely caring and neither have dismissed my claims. I had a good visit with my neurosurgeon today and he listened so intently to what I was saying and feeling. We talked about a few different causes for my headaches and what can be done for them. I will be seeing a pain management doctor next week for a consultation, because both my doctor and I feel that I have a small CSF leaf due to multiple lumbar taps I had in the hospital after surgery. The treatment for this is a blood patch, which had a good rate of success, although some people need more than one. I'm sorry your experience with your doctors has not been as positive as mine, maybe it's time for another opinion. Good luck to all of us headache sufferers!
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You're in good hands with all the support and your case is very complicated with the CSF leak and the blood patch. I was worried about that, but they ruled that out. I'm still plugging away with the 2 Motrin 4 times a day and the Topamax 200 mg at night.
I tried playing a TV bowling game called Wii maybe you know it...well after a few rounds today I got tired and started a small headache and excused myself from my father's well meaning aide and took two Motrin and went up for a nap. I am after all 5 weeks post op. I guess I shouldn't overdo it.
May go for a massage from someone a neighbor was talking about. They might do some work on the neck. We'll see.
Try what you can for your headaches.
Mei Mei
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Yes, it happened again... the headache reappeared. I went to bed and fell asleep nicely, then woke up with this killer head ache that scared me. I keep thinking that one of these days I'll have a stroke or something. I had the Post Op MRI that showed the tumor gone, if there were something else wrong, it should have showed it.
The pain was so bad I almost didn't make it to the Motrin bottle to take the pills, but managed to and get back to bed to wait to get to sleep. Woke up at 9 a.m. with a mini head ache
I hate to call the doctor because I just saw him for the post op on Monday and he said this was normal for the next two weeks.
What would you do?
Mei Mei
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Hey Mei Mei...How awful! I would call the Dr. especially if it isn't gone or comes back if it is gone. Don't really know what he can do but its always better to be safe than sorry. I know we feel we are bothersome at times but this is not a small thing you have been through and you deserve answers. The Dr can always fill you in on other things to look for that could be important.
How many months post opp are you?
Sue in Michigan
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My surgery was on Jan 12 so I am about 5 weeks. The AN side of my skull is still more swollen than the other and the neurosurg. keeps telling me the headaches are "normal" . They are just so scary.
Mei Mei
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headaches are normal huh!!! - what a feeble excuse. Apologies for my tone here but having sufferred from severe headaches for 9 years post op, after numerous tests, drugs, therapies etc, I have come to the conclusion (not based on any facts or science) that the headaches are caused by the priority the surgeons have on attacking the tumor with disregard to anything else. That is, and i am only speaking for myself here, to the head position throughout the surgery, no regard to the yanking and prying apart of the skull etc.
My surgeon told me the headaches would go away in a few months - yeah right, more like decades. I don't see why there need to be headaches for anything more than a few weeks but hey, that is just my simple view
laz
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I do not think these headaches are normal. I did not have headaches a year ago and have never been on other drugs up until surgery.
I do like my Neourologists and we have tried several medications, he told me it would not be chronic and within 6 months we should have it cured, welll..my faith is losing out. Now he thinks I am having rebound headaches, which maybe?, and I should tough it out for several days or a week, is he kidding?
This is what I am doing:
Divalproex 1000mg(Depakote), Tizidine 4mg at , Doxepine 25mg all taken at night.
I think Divalproex and Tizidine have helped the occiciptal headache behind one eye, but done nothing for the vice, throbing headaches that start at incision, neck area and throb every where in head.
Doxepine is new for 2 weeks and only gives side effects.
Immitrex for onset of headache which is almost every day.
So if I take 1 Alleve early afternoon I feel good all day, if I do not I will take Immitrex when headache starts to throb. My cycle is Alleve one day, Immitrex the next and it is not good so now what?
Neurologist thinks I should tough it out before I do Botox, I do not think I could handle that. I takes 1 hour with Immitex and it is unbearable!
When I get headache, the AN side of neck and face gets hot, swollen and throbs anyone else? Good luck to other suffers and if I get releif I will pass on. Thank you , Bell
Go
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Bell
Yes!My AN side of my face and neck-even my scalp- sometimes gets hot and throbs when I get a headache. I used to get swelling but not any longer as time has moved on since my surgery . Wonder what causes that??
Erin
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Yes, I agree with all of you that it is not normal. But what to do? As I told you before I am Topomax for the prevention of headaches and just now on the forum I discovered this link on Tinnitus posted by Denise that tells you which drugs have a side effect of Tinnitus. Well I have Tinnitus and am taking Topomax and it is on the list.
Here is the link:
http://www.askdocweb.com/tinnitus.html
Taking all these drugs is not good for us. I was taking so much Imitrix that the Pharmacist at Caremark called my doctor our of concern for my health and blood pressure. I worry with every headache and every pill that I take about my brain and my liver what I am doing to myself. I want to live a healthy life.
Sincerely,
Mei Mei