AN Post-treatment Headache Case Histories

[Patti UT]

Sounds great except anytime I have brought in anything I have found on the web to the docs, they aren't interested. They really don't know why we are having the headaches and/pr opther symptoms and do not want to admit that they could have been caused from the surgery itself.  The last one I brought in was a list of patient complaints and a study on cognitive problems after AN surgery, The doc just didn't want to even consider that it could have been caused from the surgery. Even with a mile long list of patients all complaining of the same stuff I was, all after AN surgery. And we didn't have these problems before the surgery.
WOW, can't imagine how iopeing up ones skull could possibly cause any kind of problems. I am quite discouraged by the docs.  They can diagnose the tumor and  take it out, but after that???

[Captain Deb]

Patti UT,
I agree that they can diagnose and take the tumor out but after that
They are not headache specialists!  Suggest you see someone at a headache clinic who doesn't care HOW you got the headaches, can't undo that--but can help you not have them as often or as intense, which is what my new headache wizard is shooting for. Fewer, less intense headaches also leads to better balance, because you  actually feel up to walking or using a treadmill (the ultimate balance retrainer)! I started a thread a while back called "Balance..use it or lose it" which you can look up to see some great excercises--use the search button.
Capt Deb

[Larry]

*&%&%^%#$%&^_&*_)*)*_)*(_*&^*%% headaches and &*(&^*&%^&^$%%^#$%$#%&*&^*(*_)(

I've been to 3 pain management clinics and have an inbuilt pharmacy in my body and for waht?

I'll tell you what - surgeons not giving two hoots about the after effects of their cutting of the scalp techniques.

I've basically given up. I've been a pin cuushion for too long and now just pump the neurontin and wait for the next bout.


Laz

[Brendalu]

Capt. Deb,
I printed out your thread on headaches and I am taking it to the headache place i am going to.  My PCP has tried several things and the neurologist I saw was so happy I wasn't having seizures that she dismissed my headaches.  I tried Imtrex and it made me sick to my stomach and I couldn't figure out if my head hurt worse or my sensitive tummy.  Thanks for the advice, a year of suffering is long enough for me.  Three years??  Yuck.
BrendaO

[Captain Deb]

*&%&%^%#$%&^_&*_)*)*_)*(_*&^*%% headaches and &*(&^*&%^&^$%%^#$%$#%&*&^*(*_)(

I've been to 3 pain management clinics and have an inbuilt pharmacy in my body and for waht?

I'll tell you what - surgeons not giving two hoots about the after effects of their cutting of the scalp techniques.

I've basically given up. I've been a pin cuushion for too long and now just pump the neurontin and wait for the next bout.


Laz

Two words--Injectable Imitrex--my absolute wonder drug!!!
Capt Deb

[Captain Deb]

Capt. Deb,
I printed out your thread on headaches and I am taking it to the headache place i am going to.  My PCP has tried several things and the neurologist I saw was so happy I wasn't having seizures that she dismissed my headaches.  I tried Imtrex and it made me sick to my stomach and I couldn't figure out if my head hurt worse or my sensitive tummy.  Thanks for the advice, a year of suffering is long enough for me.  Three years??  Yuck.
BrendaO

Several triptans have different delivery systems--Zomig comes as a nasal spray and Imitrex comes with an autoinject pen.  I swear by the Imitrex as it has been the only relief I've had in 3 years. I don't use the pen as the dose is too high--I manually inject--the first one was creepy but now it doesn't bother me at all.
Capt Deb

[Captain Deb]

Bump to top--headache help for noo-bees
Capt Deb

[Captain Deb]

Capt. Deb,
I printed out your thread on headaches and I am taking it to the headache place i am going to.  My PCP has tried several things and the neurologist I saw was so happy I wasn't having seizures that she dismissed my headaches.  I tried Imtrex and it made me sick to my stomach and I couldn't figure out if my head hurt worse or my sensitive tummy.  Thanks for the advice, a year of suffering is long enough for me.  Three years??  Yuck.
BrendaO

Several triptans have different delivery systems--Zomig comes as a nasal spray and Imitrex comes with an autoinject pen.  I swear by the Imitrex as it has been the only relief I've had in 3 years. I don't use the pen as the dose is too high--I manually inject--the first one was creepy but now it doesn't bother me at all.
Capt Deb

[Captain Deb]

Capt. Deb,
I printed out your thread on headaches and I am taking it to the headache place i am going to.  My PCP has tried several things and the neurologist I saw was so happy I wasn't having seizures that she dismissed my headaches.  I tried Imtrex and it made me sick to my stomach and I couldn't figure out if my head hurt worse or my sensitive tummy.  Thanks for the advice, a year of suffering is long enough for me.  Three years??  Yuck.
BrendaO

Several triptans have different delivery systems--Zomig comes as a nasal spray and Imitrex comes with an autoinject pen.  I swear by the Imitrex as it has been the only relief I've had in 3 years. I don't use the pen as the dose is too high--I manually inject--the first one was creepy but now it doesn't bother me at all.
Capt Deb

Another word on Imitrex--Gotta take it at first SIGN of headache--once you've had a headache for several hours,it won't work.  Also, nausea can be from headache rather than Imitrex.
Capt Deb

[Captain Deb]

Bump to top

[Captain Deb]

hip bump to top, still fishin for post-op headache sufferers.
Capt Deb

[Brendalu]

Still tryin Imitrex and still getting sicker and having really weird side affects.  The doc says to give it another month and he'll try something else.  I may not have any hair left on my head to pull out.  I have noticed that mine seem to start at the very top left of my incision and go to the center of my brain.  Light and sound make them totally unbearable. 
BrendaO

[nancyann]

RE:  headaches: 
                     
   Pre-op:     none
   Post -op:  severe headaches for approx.  2-3 weeks post-op., daily.
                  tapered off, none now.
       

[JohnC23]

1. Treatment status( how many years/months post op)
    -just over 9 months post op

2. If you had headaches pre-diagnosis
    - I did, many related to stress as well

3. Surgical approach, facility and surgeons name
    -see below banner

4. Family history of headaches
    -none

5. When headaches started post-treatment
   -immediately after surgery

6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
   -I have had 2 MRIs since surgery, 2 CT scans since surgery and the spinal tap as well

7. Description of headaches
   a. frequency
   b. intensity and duration
   c. recognizable triggers
   d. location on head/neck
  -I have a headache 24/7 and it varies in degree of intensity.  My neck does get stiff from pain that radiates up into my head and vice-versa.  I still get shooting pains every week or two at the surgery site that radiates in a vertical manner.   That pain is very severe.

8. what medications/treatment you've had
   -I currently take Nuerontin, Imitrex, Topomax and a Tizanidine (muscle relaxer).  I have through the course of my post op treatment taken many diff. pain meds, including the percocets, vicodins, even oxycotin but they never gave me much pain relief.  Imitrex is by far the best thing that I have taken, but as Capt. Deb stated, you have to take it right away or it does not work.  You also can only take it twice a week.
I tried several sessions of accupunture, but I did not get any relief from the pain with that treatment. 

9. Any "definitive diagnoses" you have gotten from a specialist
   - Both the Nuero surgeon and nuerologist stated that I will just have to take some time before I am completely over the surgery.  The surgery was a  success but I am one of those persons that it is gonna take longer to recover.

On a related topic, I wanted to let people know make sure they ask their Dr's for samples of meds. such as Imitrex etc. This can save you a lot of $$$$.  In 2006, I was paying $20 each  for a prescription a month for Topomax and Imitrex.  In 2007 after raising my insurance plan, I pay $75 for Topomax and $130 for Imitrex.  And with Imitrex being the only pain medicene that I get relief from....you see where I am going with this.       (Thanks    MedBen 
Luckily my nuerologists has some samples for me so I don't have to file for bancruptcy.




 

[Monie]

HI there all,
May I first of all say that it is heartbreaking to hear that after all the stress and trauma of diagnosis and treatment you now have such a horrendous time with headaches. As a newly diagnosed 'wait and watcher' I was hoping you all might answer a couple of further questions:
1. Did you have sub occ in the hope to save hearing?
2. Was the hearing preservation successful?
3. Was there some other reason you had sub occ surgical approach?
4. Do you have a titanium plate at the surgical site?

I hope you don't mind me asking these quesitons but I am still trying to work out what to do and reading this information (as harrowing as it is) helps to drive decision-making. My surgeon feels that I should have trans-lab to avoid the increased risks associated with mid foss or sub occ. He feels that I can live with ssd much more easily than I could with facial paralysis or debilitating headaches (and I see his point, I guess).
Love to you all
Cheers,
Monie