increased seizures after gamma knife

[brainpain]

i have had grand-mal seizures for 25+ years. my seizures have been very well controled and i only had a seizure if i forgot my meds or under alot of stress. i had a 22mm craniopharyngioma removed by craniotomy in 06 . the craniopharygioma has came back and has grown 1mm in 3 months . it is 1/2mm from my optic nerve and i was going to have a craniotomy last month but chose gamma knife instead. i had 10gy my neurosurgen said that was safest strength for my optic nerve . i had the gamma knife may 10th . i have increased seizures since the gamma knife. i have had 4 seizures in a week . i had 2 seizures in 1 day and 1 the next morning . i went to the er and was uped from 2000mg keppra to 2500mg.i had a grand-mal seizure last  night and when i came to i was so sick i feel impending doom. my questions are , is the seizures a side effect of the gamma knife and will they get better? my tumor was aggresive last time and this one is to. how effective is gamma knife on this type of tumors? i dont have a follow up till november to see if it stops the growth or shrinks the tumor. i have low/normal pituitary hormones and dont take any hormones. does the gamma knife effect the pituitary hormones as i havent had any labwork for 2 years. thanks for all your help and reading my post. any addvice is welcome!!

[enzymelover]

  See if there is a medical transportation service in your area, if you are interested in traveling to an endocrinologist or other doctors for better treatment. Your insurance may even pay for this, well maybe. i believe there is one called Eastern Royal in KY. There are a few in my area, SF Bay. Some of these services will take you anywhere you need to go, not just to doctor appointments. This would be a great way for you to get to endo appoints.

I still think you should see an endo asap. Controlling hormone function is primary after any surgery or radiation in or near the pituitary. You should have hormone testing within 6 weeks of any procedure.

My son has not had much follow up yet since his surgery. He needs to go back again soon, but right now, I'm trying to deal with his autonomic dysfunction and OI, trying to find knowledgeable docs in my area, to document his condition and specific needs, before he must go under general anesthesia again (he's unable to do MRI's anymore without this, due to anxiety and the autonomic problems.)
His neurosurgeon has high hopes for no reccurence of his tumor, but, a cranio is a cranio, and they do tend to reccur, sometimes very quickly. It is the nature of the beast.

Do check out the medical transport service. It would give you some needed freedom, and control of your situation. I may have to use it myself, since my broken ankle has both me and my son in wheelchairs right now, and I hate to delay his appointment until I'm walking again. (My crutches are difficult to use, and I feel I'm risking another fall).

Chin up! And vent all you like!
Enzy  

[brainpain]

thanks for your support! i have called my neurosurgeon and no answers or call back. i drive 60 miles to see him and my problem is all the neuros/neurosurgeons are all together in 1 place,with ant experance in pituitary tumors. i was left in the dark with my last tumor to. it had grown to 22mm and lost my vision till got help so im getting depressed again. as far as my hormones i havent had any bloodwork for 2/3years. i allways stay low/normal so i get no help there just told to lose weight . my bloodpressure stays low 104/70 and i get nuthing but praise for that even tho i get sick and pass out and had to stay in er till it came up to i could function.i cant handle any stress and i think maybe thats why my seizures are getting worse.i dont have an apt for follow up and see if the gamma knife worked till november 11. did your son have gamma knife after the tumor was removed? my neurosurgeon said he removed all mine and there was no need ! well he was very wrong if i had it after maybe i wouldent be here again. im sorry im upset today venting! he even told me my pituitary hormones wouldent be effected by the gamma knife. im stuck with this neurosurgeon and losing faith and joy of life to. i have no way to see different doctors and no family support . its hard to drive when my licenses is on hold for 3 mnts from seizures and no one to help. my husband is working 6 days a week and no endo for 60 miles . i have gotten to the point of giving up again. i just dont know where or what to do from here. sorry for venting but thats why im stressed and cant get help and getting depressed. thanks for your support!

[enzymelover]

  Hi!  just me again. I'm sorry know one is answering your questions! Have you been in contact with your neurosurgeon since your last seizure? He should be available via phone or e-mail,to answer your questions! Get after his butt! Get his e-mail from his appointment co-ordinator.
I would like to know why they will not support your hormone function with hormone med. You need these! Yes, gamma knife will diminish pituitary function.

I too would like to know if it's effective for controlling craniopharyngiomas (don't you just hate typing that word?)  since my son may be in the same position, if his cranio. returns.

[brainpain]

last time sorry bump

[brainpain]

sorry bumping