pains in top of skull

[cburley1]

Sometimes I get severe pains in the top of my head, they feel as if I've hit my head really hard. I went back to neurologist last Tues. I have my first post gamma knife mri on Thursday...he was not impressed that I had no follow up appt with neurosurgeon or wasn't scheduled for mri for 9 months after gk....anyways does anyone else have these type of pains...also for the last couple of years my neck & shoulders ache like crazy now that is worse and most of it is on an side...anyone have anything like that.

1.6 cm acoustic neuroma
gamma knife 2/7/11

[proudmomof3]

Hi, I also have the same pains in the top of my skull. I had GK in April. I see a Neurologist for the first time this Thursday to discuss the pains. My surgeon could care less.

I definitely do NOT feel better since I have had GK. It seems I am falling apart and something different hurts every day. I am curious as to what the skull pains are? If you find out, please post the answer as I would love to know as well.

Just curious, are you in VA? It sounds like we have the same surgeon (LOL).

Good Luck

[cburley1]

Lol...it does sound like the same surgeon doesn't it....actually I'm in Ohio...but I had my gk in Morgantown, WV at the University...I feel that this whole thing isn't as black & white as doctors try to make it out...I was told that gk was a better option for me because of where my tumor is located....I think I made the right choice, but I was given no follow up instructions on what to expect, what is normal and what is not....it's aggravating...how big was your tumor and where did you have your gk...I agree, it seems like something new hurts everyday...if I get any new info I will post it and please do the same...at least now...I don't feel like it is all in my head...(no pun intended...lol)

[ppearl214]

Hi

Have to weigh in on this, solely based on my experience........

Follow ups should be with the neuro-person (ie: neurologist, neuro-onc, etc) of the radiation team for these precise reasons.... for any post-radio issues.  The radiation onc and such have done their portion by blue-printing the treatment and by doing the treatment... for all post-treatment, the neuro-team member should follow for anything that may crop up. NS and Radio-oncs should definately be kept updated to post-treat issues as it helps them with future treatments down the road and the hope is.... since these are "teams" performing the treatments, the "teams" usually have team meetings to keep everyone on the team up to date with patient post-treat statuses.

Like you, I have had pains around my head over the years (I am now 5-yrs post CK).  Have been referred to Headache specialists and triggers of the head pains unknown and undetermined if direct relation to the radiation treatment.  Have been diagnosed with 6 different kinds of migraines, including "daily chronic migraines".  Some also noted as "ice pick" migraines (like being stabbed with an ice pick/steak knife). 

Headaches are noted as potential side affects, especially so soon after radio treatments (definately within first 12-18 mos) of treatment.  Your neurologist (yes, you are in the right hands) should be able to diagnose the type of headaches that you are experiencing and please make sure you are following up with the neuro-member of your radio-treatment team.

It is all too commonplace that folks tend to not follow up with the members of the radio-treatment teams once treatment is performed.  It is ALL too important to make sure we do.  They need to know what we are experiencing  so they can track us... and for future patients.  I'm noting this here for all past, current and future radio-patients.  This has been noted for years.  Understood that many may travel to have their radio-treatments performed and if that is the case and you seek follow up with a local neurologist, please have the neurologist communicate direct with the neuro-dr of the treating team. The treating team know the situation of the treatment intimately and will need to share info back and forth between the 2 to help provide the best follow up care possible.

Sorry.... had coffee this am.

Phyl

[Vivian B.]

I experienced this type of pain often before I was even diagnosed. It has subsided in that specific area, but it continues to happen around the ear area. It may not be from the tumor at all. Sometimes pain on top of the skull could be from congestion. I don't think it's from the radiation either. However, I would not wait 9 months to do an MRI. I think 6 months after sounds reasonable, unless your symptoms become more severe or more constant you may want to consider one sooner.

Vivian

[Jim Scott]

Vivian ~

I can't add much to the good information already posted except to note my experience following AN debulking surgery when I underwent 26 FSR treatments (in 2006.)  Although I never had headaches I did (and occasionally still do) experience a temporary (1 day) soreness in and near the mastoid bone where my surgery & radiation took place.  One ibuprofen usually relieves it.  However, your pain is different and the MRI may explain why you have it.  The neck & shoulder pain is fairly common but more often in surgery patients that were in an awkward position during the hours of surgery.  Sometimes muscle relaxers can alleviate that pain.  Chiropractic also has been employed successful by some AN patients with that type of pain.  I would suggest consulting a pain management specialist for more options.

Jim

[Shan1014]

Hello,

Just wanted to share:  i too, had pains on the AN side of my skull.  Shooting pains that lasted 10-15 seconds.  Some were quite painful.

My ENT doctor thought a nerve was showing from my surgery and sent me to a pain doctor.  He disagreed and put me on Lyrica.

I am not sure if that is what worked or the decadron( Steroids) , that my Neuro put me on.  Anyway, something worked and I rarely have those pains anymore.