Post-Treatment > Headaches

Headaches 6 months post GK

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HoundMom:
I had GK in April for a  2.6 x 2.4 x 2.8 cm AN, left side.  In Sept I started having these horrible pains in my head that included hearing loss, a loss of the ability to fine focus my left eye and horrible bouts of vertigo.  I saw the neuro who did my GK and he blew me off.  Handed me an RX for steroids, told me the headaches where completely unrelated to my tumor or my GK and told me find a good GP.  I have been treating with a migraine dr for over a month now and I am 3 different migraine med but I am no better.  The migraine dr sent me for another MRI and it looks like the AN has actually gotten larger.  2.8 cm AP x 2.4 cm transverse x 2.9 cm CC.   How could the headaches not be caused by this increase and what do I do now? 

Patti:
i am so sorry for you.  that was a pretty big one to start with!  i don't understand why the neurologist would say the headaches were unrelated!  i have no answer for you, just wanted to let you know I feel for you!  I had SRS done almost 4 weeks ago for a regrowth.  I have a follow-up on the 7th and I have lots of questions!  There was very little communication with me, so I don't really know much.  From what I've read, the tumor swells before it starts shrinking.  Keep us posted!

HoundMom:
Thanks, at least for the sympathy.  I saw the migraine dr again today and he says that the problem is not really the AN, its the post GN swelling which is pressing on the Trigeminal nerve behind it.  That is what is causing all my headache pain,  It's a matter of managing the pain vs managing the swelling until the swelling starts to reduce.  At least I have some answers. 

keithmac:
Been studying folk's experiences here on ANA for about a year and what comes over regularly are the problems experienced which are down to subsequent swelling of the tumor after GK/CK.  I wonder if anyone's compiled any statistics about this? 

It might help the specialists to help their patients manage expectations and help those same specialists to refer their patients to get effective follow-on pain relief.  It's hardly rocket science as the saying goes....

Petrone:
Same.  The most frustrating part of my AN experience were the debilitating post-GK headaches.  I distinctly remember my oncologist advising me to contact him immediately if I experienced any post-GK pain or discomfort.  But, when I reached out to him after I began experiencing "ice-pick" headaches, constant dizziness and a sharp hearing decline, the response I got from him was, "Hmmm, I wonder what could be causing all that?"  The frustrating thing was that I was not looking for a "cure" as much as simple reassurance that this was a common post-GK response (it is) and that the headaches and other symptoms would subside in a few months (they do).     

The good news..., the headaches and other symptoms subsided in a few months!!  1 year after GK, I was symptom-free.  2 1/2 years later, I've never felt better in my life.  My AN is something I rarely ever think about anymore.  Annual MRIs show necrosis and slight shrinkage.  Tinnitus is always there, but always on ignore.   

So, hang in there, and never give up hope!!  Try Aleve and ice packs for the headaches.  Get rest when you can.  Exercise and good diet will help when you start to feel better.  A glass of wine now and then helps too  ;)

Be well,
Petrone 
         

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