brain swelling after gamma knife

[brainpain]

i had gamma knife 5-10-10 instead of a craniotomy. im having so many problems and no answers. i am getting very moody to the point im going off on everyone. i have always been close to my parents and showed great respect to the both of them.my temper and fuse is very short as i fussed at my dad ( not like me at all.) i feel like a very diff person now and i wasent surprized when my mom told me i was a completely diff person. i cant stand to be around alot of people and dont enjoy anything i use to, i dont even wear make up anymore! im still getting low bloodpressure and weakness in my legs. my seizures have gotten so much worse . one side of my face drops and i dont have but a second warning and i stop breathing. i had grand mal seizures before the gamma knife but now i cant get them in control. i have had 7 seizures in 12 weeks and each 1 is worse. after the seizure i come to after a couple hours and im so sick i cant move. i had a seizure last night and i had a 10+ headache.my neurosurgeon said my brain is swelled from the gamma and i see him on the 12th . that scares me so much . how will this be treated and any damange to my brain ? im worried i chose the wrong treatment for my tumor . my seizures are getting out of control and my kids are scared,they have never seen my seizures before the gamma .any advice and help. thanks

[LivingInHope]

I had someone tell my loved one that she had necrosis (tissue death) in the tumor, which she said actually began prior to gamma knife!  More of it showed up in f/up MRIs after gamma knife and it was explained that would happen because the gamma rays killed the DNA of the tumor.  I believe they did see some fluid in the area post gamma knife on at least one of the f/up MRIs.  For awhile, there was an increase in headaches, followed by an MRI that showed the tumor dying more.  So she preferred to look at the headaches she had in a positive light- as a good sign the tumor was dying.

I would recommend you and your husband look for another neurosurgeon for a second opinion on an emergency basis regarding the seizure activity- if there is a hospital where the on call neurosurgeon for the ER is not YOUR neurosurgeon, I'd suggest you try there instead today!  You need to impress upon them the urgency of the situation- make a list- how many seizures you've had in the last month, what's happening with your face, your personality changes, how much Keppra you are taking and the fact it is not preventing the seizures, etc. and hand it to the doctor.  Then they can ask you to elaborate and hopefully you will have the most important bases covered so you won't forget to bring something up.  You need immediate help with this as well as finding a different doctor for the long term.

And Rumpled is right- you need to find a competent neuro-endocrinologist who is experienced with treating post op gamma knife pituitary patients. It is imperative you find someone that knows what they are doing.   Are you taking vitamin B 50 time release and magnesium regularly?  If not, you might consider getting these over the counter pills and giving them a try as you try to get professional help.

[brainpain]

thanks girls for your help! i know i need to take charge of my health and im just stuck. the hospitals close doesnt have neurosurgeons , i get refered to lexington . i have seen 3 neurosurgeons and they all tell me im in good hands with mine. im going threw so much stress no one would believe. with my insurance i can only go to certain endos and ive been to them ,there all in the same office! they all agree with each other and spealist in pituitary . my family thinks i just want something to be wrong. my son broke his ankle and had surgery tuesday so i talked to the nurses if there was a good endo or neuro to see and was told no endos but in lex and neurosurgeon was mine. my husband took off work to be with our son during surgery and he was told he cant take off for my apt on the 12th. i cant drive myself that far im scared of having a seizure while driving 80 miles alone.my mom is scared to drive in lexington and my bro/sis cant take off work so i either take the chance and drive or cancle the apt. i feel helpless and alone in this battle. because i look normal (sorry) and can walk and talk im fine. im having very bad mood swings and hedaches and when i geyt upset stressed i just tremble. my (seizure) neuro tells me to see my neurosurgeon she cant help my seizures .she thinks there comming because of brain damange.my neurosurgeon says he wont treat my seizures just the tumor. im going crazy now !!!! what so i do when ive seen all docs and they push me back and forth with no help??? im taking 50,000 iu of vitamin d a week because my levels were so low. i cant get to diff neuros or endos ,i just cant drive that far alone. ive searched and there 100+ miles away. i am angery and having problems with my inlaws . omg i just wana run away

[rumpled]

Do you have girlfriends? Someone can take you to an appointment who it not your hubby and another friend can babysit.

I have seen docs out of network - sometimes it is worth it - start faxing your records out.

I know it seems impossible and your hubby certainly is not help - but reach out and get some, you are not alone in this.

[enzymelover]

Did you try contacting that medical transportation service I told you about in another thread? I think it was called Eastern Royal. They are in KY. Might even be in the phonebook, or have a website. I think they will take you to any doc in the U.S.

A med. transport service may be covered under your insurance, and they would take you to your appts. and home again. No driving for you!

We have several of these transport services in the bay area.

[LivingInHope]

You might check with your insurance, tell them you are having seizures and ask if they offer any transportation service.  If you have medicare disability, as I do, I've belonged to more than one HMO that offers this service up to a certain number of times per year.  You might also call the doctor office and see if they have something to suggest regarding transportation or perhaps a doctor calling on you at your home, since you don't want to drive when it could be potentially life threatening to yourself and others around you for you to do so.  I'm sorry it is so frustrating for you.  

You might also contact your insurance to see if it isn't possible to get an outside opinion covered by them, since all the endocrinologists they have on their plan in your area are in the same office and that isn't exactly what stimulates feelings of autonomy and independence of specialist opinion in you.  I'd ask to speak to a case manager at your medical insurance about this and explain the situation, including your current seizure situation.  Case managers are supposed to be there to help you navigate the health care system.

[horselip]

I'd love to kick your hubby in the nuts.
Horsey