Survey for Post-treatment patients

[aardvark]

1. No steak knives, but sharp sudden twinges behind AN ear
2. CK  Sept 2005
3. At 17 months out - off & on for 2 days, none since
4. n/a

Adrienne

[Omaschwannoma]

1.  Yes
2.  suboccipital, 1/2005
3.  24/7 for 1 year tapering off to twice monthly
4.  first 6 weeks - fioricet (developed rebound headaches), 800 mgs. ibuprofen (when finished with dr's. script I began buying from store) tapering off to now 200 (the usual dose x's 2) up to 800 over 12 hour period (for the occasional nasty one which can last three days)

By the way I was told these head aches are not AN related!!!!!!  Was told "more likely neuralgia." 

[jtd71465]

No
Retrosigmoid 1/10/07

I was told that headaches (not all) after surgery can be caused by "bone dust"...has anyone ever heard of that before? 

Funny thing is I had more head pain prior to surgery...

[Jim Scott]

Survey questions:

1.  Do you experience "sharp" head pains (ie: like a steak knife being jabbed into your head)?

    Yes.


2.  If yes, what kind of AN treatment have you had and when did you have your treatment?

     Retrosigmoid approach microsurgery 6/7/06 followed by 26 FSR treatments from 9/06 - 10/06


3.  How long, post-treatment, did you experience these kinds of sharp head pains?

     Approximately 9 months.


4.  If you worked with your dr regarding these kinds of head pains, what was their recommendation in treating these pains?

    No physician recommendations.  He said the pain was normal healing.  I took 4 Ibuprofen tablets (200 mg. each) per day at least 5 times per week to alleviate the pain.  They were very effective.  The stabbing pains and 'tightness' have now completely disappeared and I consider myself healed.   

Jim

[er]

1.  Do you experience "sharp" head pains (ie: like a steak knife being jabbed into your head)?

once in a while but I do not describe them more like a head pin and it only last for a few seconds. My opinion of this is reconnecting of nerves or firing.

2.  If yes, what kind of AN treatment have you had and when did you have your treatment?
March 28,2005
AN, left cerebellopontine angle, 1.5x1.1 cm in transverse & 9 mm in craniocaudal dimensions,microsurgical removal,Sean Mc Menomey MD @ Oregon Healthy Science University

3.  How long, post-treatment, did you experience these kinds of sharp head pains?
I still do
4.  If you worked with your dr regarding these kinds of head pains, what was their recommendation in treating these pains?
I don't
eve

[okiesandy]

Nope, no head pains. Although others sometimes give me pains else were.
CK
NO
and NO

Sandy

[GM]

1.  No
2.  "Zapper"  (Gamma Knife)....but to answer the question...N/A
3.  N/A
4.  N/A

Gary

[chica07]

1) yes
2) microsurgery
3) few ( only after surgery)
4) none

[ppearl214]

you all rawk (and Sandy, you have been SO missed!  ). Thank you all for sharing this with me.... it's giving me a good sampling (microsurgical vs. radio, etc)... and most appreciated.  I shared these concerns with 2 of my drs as they are working these issues for me.  More participation is appreciated so I can give them a good indicator that this may/may not be related to AN's treatments as a whole.

thank you all again,
Phyl

[Sue]

It's a no for me on all issues, Phyl. 

Sue in Vancouver

[dally1932]

1.  Do you experience "sharp" head pains (ie: like a steak knife being jabbed into your head)?

    Yes, I describe as Ice Pick Stabbing pain


2.  If yes, what kind of AN treatment have you had and when did you have your treatment?

     Retrosigmoid approach microsurgery 6/03/02


3.  How long, post-treatment, did you experience these kinds of sharp head pains?

     Still do, 5 1/2 years post surgery.


4.  If you worked with your dr regarding these kinds of head pains, what was their recommendation in treating these pains?
    a. Nerve Block Injections, relief was only a couple of days
    b. Meditation, physical Therapy, TENS Unit, Accupunture (2) different doctors,
    c. Neurontin 4000 mg daily, Topomax, Indomethacin, Maxalt, Percocet 10-650, plus another 30 medications tried. I have stuck with
       Percocet for 3 years now along with other medication, nothing completely relieved the pain. Doctor wants me to go to Mayo or John
       Hopkins for another opinion, recent MRI was normal.

Thanks!
Chuck

[Ellenmn]

1. Yes on occasion

2. Translab 6/28/07

3. started about 3 wks after surgery still get off and on.

4. I mentioned it to him but really didn't talk much about it because they don't last long and I just deal with it because I don't like taking medication unless there is no alternative.

[irene]

Does anyone ever take a short course of decadron 4mg 3xs a day for 3 days with a rapid taper if you are in the throws of a severe migraine/headache crisis?
Irene

[mindyandy]

1. yes on occasion not often however did have the episode about 3 weeks ago off and on for about 2 days.
2. no treatment yet (will find out Monday 11/12 when CK is scheduled)
3. n/a
4. n/a

[ppearl214]

Does anyone ever take a short course of decadron 4mg 3xs a day for 3 days with a rapid taper if you are in the throws of a severe migraine/headache crisis?
Irene

Hi Irene, I know of some that did take the occassion decadron well after treatment as occassionally needed but not many.


Thank you all for sharing this with me... this is most helpful and insightful......I appreciate everyone's inputs.
Phyl