Headaches 6 months post GK

[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 
         

[MusicTracy]

I'm also interested in this.  I had Gamma Knife 2 and a half years ago (Aug 2013) and developed hemi facial spasms 2 years ago (Dec 2013).  I was taking gabapentin but went off it a year ago (Oct 2014) as my husband and I are trying to start a family. Since going off I have only had a few spasms.  The past couple of weeks I've noticed my balance has gotten worse. Most noticeable when I am attending my Tai Chi class.   Then this past weekend I developed a headache that has not gone away.  It's going on 4 days.  Sunday night I started seeing zigzag lines in my eye. Decided to go to sleep after doing some online research which indicated that it may be an ocular migraine and recommended closing eyes.  When I woke up the next morning the zigzag lines were gone.  As Monday went by the headache grew worse and I noticed I had trouble following movement on my computer screen especially when scrolling.   Spoke to Neurosurgeon on Monday and they told me to contact my neurologist and that it has nothing to do with my acoustic neuroma. I am still waiting to here from neurologist.  I'm worried that the tumor may be growing.  My first MRI showed swelling.  The last 2 MRI's have been stable but no necrosis has been noted.I have never experienced headaches like this before.  Any advice would be greatly appreciated. 

[Patti]

I would love to know who all these neurosurgeons are.  I have had similar problems with my neurosurgeon and his dismissive attitude about such a scary thing to me (2nd timer!).  I need to find a new neurosurgeon in the NY area soon.  I used Dr. Garg at Montefieore.  Very disappointed with his treatment of my concerns.

[ANSydney]

MusicTracey, As you've said, you've probably experienced a scintillating scotoma. I too get these on rare occasions (maybe three times over the past 5 years),so perhaps they are related to an AN. They start off small and take over more of the visual field. Half an hour later, it's back to normal.

[ANSydney]

Here's someone else which suggests that there is a link between scintillating scotoma and ANs;  http://www.anausa.org/smf/index.php?topic=12233.5;wap2

[Tony14]

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 
       

I noticed this post is an old one but I just wanted to let you know it’s given me a lift on one of the bad days. I’m 6 months post GK for a 2.9cm tumour and have been experiencing painful headaches and balance issues on and off for a couple of months now. It’s frustrating but it hasn’t stopped me doing much and I’m ok to work so I’m very lucky on that front. Follow-up MRI in month 4 post GK showed some swelling so I know the cause but reading this gives me hope the symptoms will pass.

Whether you read this or not I just wanted to say thank you ❤️

[donjehle]

Thank you, Tony14, for making your first post on the ANA Forums!

And thanks for sharing your experience as well as the lift you have personally received from one of our forum members.

Please keep us posted on your continued progress!
Don

[mwatto]

Hi I have had stabbing ear pains and behind eye and deep on that since since my CK 3 and a half years ago- in fact I still cant sleep on that side! Anyway no help other than suggested I take Amitryptaline (declined) Gabapentin (declined). MY MRI initially showed the cysts had disappeared and in fact it had shrunk- since then every MRI shows stable and no growth. So I get on with it. PEA (palmidrol) has been really helpful- if I am having a flare (mine is ipsilateral to trigeminal) I take it 3 times a day with boswellia and lemon balm. Or I take a low dose aspirin with a panadol. I make sure I sleep (melatonin, a fragment of zolpidem if I need). I massage neck and around ear. All this settles it. look into PEA. My preferred brand is Herbs of GOLD at the moment.