When is enough enough?

[salamander]

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 

Hang in there,

Samantha

[GaryK]

 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

[Mei Mei]

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

[kimberly]

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

[Mei Mei]

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

[Nickittynic]

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

[staypoz]

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

[Mei Mei]

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

[Larry]

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

[Mei Mei]

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

[Nickittynic]

MeiMei - I will keep my fingers crossed for you! I was told the same thing at my six week appointment. 

[ombrerose4]

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!

[Mei Mei]

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

[Mei Mei]

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

[sues1953]

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