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
I'm so sorry you are having such serious problems. Gamma knife has a lower morbidity and than open surgery and from what I can see on line, no mortalities reported with it. So, given the choice between the two, you made the right decision. However, your surgeon waiting to the 12th when he says you are having brain swelling and assumedly knows you are having all this seizure activity is unacceptable. I recommend you get taken to the ER- please go straight to the ER with your symptoms and get help immediately!
They can do a couple of things - btw, sorry for all the side effects... it seems that you are getting the worst of everything. Some people sail through it and some get the side effects.
There are meds for the seizures but if the swelling is severe they may have to do a surgery to relieve the swelling.
The face thing may or may not be what is called bell's palsy - or the ray hit a nerve. Nerves are sometimes in places they are not usually are.
Your hormones were a mess to begin with and now with the added stress of this - they could not have improved so you are showing signs of hypopit and panhypopit - you need hormonal support and you would feel better.
Regarding the face droop- if it is Bell's palsy, as Rumpled suggests, my grandma had this and with regularly massaging her face, she got her smile back! So, you may want to be doing that every day a number of times a day, in case it would work for you too!
thanks to all for your help and support. it is sad i get more help and answers on this site than i do at my neuroligst and neurosurgeon ! the face drooping happens just before my seizure starts. that is new and scared my hubby and the er did a cat scan on me 2 mnts ago and said i didnt have a stroke. my neurosurgeon (wont) treat my seizures even after there worse after the gamma knife. i still have low/normal hormone levels so no hormone meds! i have very low vitamin d and take 50,000iu a week for 12 weeks then 1nce a month for a year.my neurosurgeon told me i was having brain swelling from the gamma and thats prob why my seizures are worse and he wont treat them just to go see him on the 12th. my hubby says i have 3 personalitys now and he has seen the change in me to , the stress and my attitude change is hurting our marriage.im up to 2,500mg keppra a day and it dont control my seizures.i have asked about getting hormones with my levels being on low/normal and if i would feel better .my neurosurgeon and endo dont want me to start hormones unless im low .i was told they dident want to start me on a life time hormones unless i really needed them. its so hard to fight when no one will back you up and support you.my neurosurgeons nurse told me brain swelling is good my tumor is dieing? anyone heard of that one? i had to beg to get the appt .i was a lab rat last time and seems this time to. i just wana be myself again!!
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.
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
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.
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.
In fairness to brainpain's husband in case he isn't the problem here, it sounds like his work is telling him he cannot take off after he already took time off for his son. Is it a possibility he fears the loss of his job and thus his medical insurance covering his wife?
thanks for all the great advice. i did check into the transportation and my insurance wont cover it and it dont run in my town. i dont have any girlfriends since ive been married. my neurosurgeon wont take calls . i go see him the 2nd of next month .ive had a hard time this week ,ive had 2 seizures and im staying so tired. i went the new endo and i told her about my anger rages and my mom told her my personality has changed and because my labs were low/normal she told me i have depression. my anger rages is causing trouble in my marriage . im having diff symptoms than last time. i have personality changes, anger rages ,people get on my nerves and i feel like fighting . could all the changes im having be the tumor pressing on a nerve or just be depression? has anyone else had any of the symptoms im having? i dident get a copy of my labs. can my pituitary be fine and i dont need any hormones with my labs being low/normal ? my family thinks im bipolar because the mood swings. i cant control the anger rages , i want myself back!
Yes - low normal is NOT where my doc puts me. He wants me high in the thyroid levels (except TSH), higher in IGF-1, higher on the cortisol end - at least not on the low end (we argue about where ha ha ha).
Prolactin does need to be low though.
ADH needs to be low but I doubt that needs to be tested.
You need someone on your side. Your endo, your mom and your hubby seem not to be sadly... Dad, counselor?
If you could only funnel that rage.... to get a good endo and get yourself some decent medical care. But yes your mood issues could definitely be due to your tumor. I've got some anger issues myself but I've learned to funnel it into a fight for me to get to the bottom of what the heck is going on...er well uhm mostly. I can get pretty snippy too.
thanks so much girls! i have talked to my hubby about finding a neurosurgeon and endo for second oppinion. he thinks im going to the best doctors . because my neurosurgeon goes over my case with 2 other neurosurgeons im in best of care. my hubby looked my neurosurgeon up on the web and he does sound great and you would think you would get great care and thats why my family thinks im crazy. look him up and tell me wht you think university of kentucky hospital my neurosurgeon is byron young and the endo is ralph miller. i havent seen the endo in 2yrs . i have an apt next month with my neurosurgeon and i will ask about hormone testing and about my personality changes and the anger rages. im even starting to have them after i come to after my seizures!! my hubby told me i yeld and fussed and give him mean looks when i was comming to .i have asked before about my levels needing to be higher and my endo fusses and ask me when i became a doctor. any doctor i go to agree as long as there normal my hormones are fine and then im shunded and told im depressed.i do need to go to counsling as i keep it bottled up now. thanks for your help!!!
my neurosurgeon office is very formal. the nurses wear the old white dresses and little hat and its very impressive to my family. i have seen almost every neurosurgeon thats in that hospital , for there oppinion. those neurosurgeons dont like questions and get very rude if you try to tell them anything. i would love rumpled to be with me just once! they talk down to you and treat you like your crazy ,i have left in tears. my insurance refuses me to go to different neurosurgeons because ive been seen by so many my neurosurgeon has sent me to and they all agree with each other. oh ralph miller he was on tjhe pituitary network of endos , not anymore. he is a know it all jerk . my labs were all low and he tells me to lose weight and i would feel better. my doctors wont let me bring list of whats goin on , its a cheat sheet and my memory is almost shot. i dont want to dog my neurosurgeon as i am alive today because of him but feel i am being ignored like last time till its almost to late . i cant say that out loud it puts to much stress on my family. im scared and alone in this battle and my husband wont talk about it. i have an apt 2nd and im gona ask for pit levels . advice on the memory ?? my cheat sheet gets trashed everytime. im getting very depressed ,thanks for all your help & support
That is ridiculous that they would trash your notes you bring to help you get the most from you appointment! That should be reported as a written grievance to whomever is over the doctor- whether it be the medical board or what have you.
Suggestion- make your list and make ten copies of it. Try to hang on to the first one. Explain you have a poor memory and this helps you to cover all the bases you really want to discuss with the doctor. If they grab it away from you....whenever they throw one out, pull out another one. Maybe they'll get the drift. You are paying the doctor for their advice and you have the right to have notes to help you with your memory. It might be good to have a lawyer present (only don't tell them it's a lawyer) for the doctors that cause your notes to get trashed. That's wrong!
But you do have to talk from your notes sometimes it seems, rather than handing the doctor a list, because the doctors want to hear it from you and not read it from you. Even if you have arthritic jaws like mine and it hurts to talk much. Another idea is to record a short video clip with your "cheat sheet" points and play it as much as you need with the doctor- would they dare throw away your recording device?
Maybe you could go with your husband to your pastor for counsel? You need support. If there is a prayer network at your church, God listens to His people pray and that prayer support is so important. Your husband must be having a tough time dealing with the trauma you are going through and it must stress him a lot. He needs help in dealing with this himself so he can turn and help you.
Are there no neuroendocrinologists in your area or at least a different endocrinologist than that one to help you with the hormones?
Does your insurance have a nurse network to call? Can you get enrolled in their case management service? I did that with my insurance - most have them - call the toll free # or look thru the website and ask about it. You usually can self-enroll (I did) and the nurse can be your advocate. So far mine has helped me get into pain management and wants me to go for counseling myself.
I would call. If I was closer, I would go to that appointment with you - with a laminated copy and one one my memo part of my phone.
You can report the doctor to the state board of medical examiners - it sounds like abuse.
What happened with your appointment on the twelfth you referenced on your original post? Did your neurosurgeon attempt to relieve the swelling of your brain?
If you are still having seizures and behavior changes now, he did not succeed. You need to assert yourself immediately! You need to tell them you are still having seizures and personality changes and that you fear for your life & you want to be admitted to the hospital until they can get the seizures under control. You need to get a ride to a much SOONER appointment (today at all possible) rather than drive with the seizures you're having & if you can't get a ride and a sooner appointment after telling them that, the next time you have a seizure, you need to be taken to the ER. If no one can take you, the person unable to take you should call 9-1-1. Your situation is a true emergency and life threatening. Even your husband's work, if he explains his wife's life is in danger, ought to be willing for him to take a little time off for you!
I have a cousin who had increased intracranial pressure from Reye's syndrome and she was behaving not like her normal self. Please see PM for more info on increased intracranial pressure.
Hi, I made 2 surgeries to Pitutary Gland becuase of tumor in 2000 & 2001. But tumor back. So I made Gamma Knife 2 weeks ago. Now I have no headache, grand mal seizures, dizziness or something else. Except I began to eat more and more may be 14 light meal a day and I feel I do not need to sleep. I sleep not more than 3 hours a day. Any sudden news???
I sympathize w/ you I started experiencing headaches in early Feb 2011. My to just kept prescribing more drugs even though ibuprofen was keeping pain under control. Finally the night before my 41st b-day in may I was given an MRI. It showed I gR a memingioma between my Dr frontal and temporal lobes. I opted for gamma knife instead of surgery on Oct 27, 2011. Procedure went great. On Dec 18 th suffered a seizure while driving my daughter and I home from church Christmas program. Was taken to local hospital then bacrk to Indy where I had gamma knife performed. They put me on steroids, anti seizure meds and took away my driving privelages. I felt great 1st month,energized,motivated happier than I've been in life. When they began weaning me off steroids energy plummeted, mood got terrible and anger.increased. my daughter tells me I'm mad all the time & she wants happy mommy back. I agree with her I the myself this way. Had to go back to Dr in Feb bcse inc headaches. More swelling. So took med levels up slightly then started wean . Went back to neurosurgeon 5/14/2012. Swelling even greater put me back on sterids but only 2 mg of dex, 4mg seems better and I don't have as large of mood swings. I also wonder if keppra could be causing some of anger issues. I read that on the list of side effects w/ drug. Perhaps higher dose of steroids masks symptom until they do the wean. I'm tired of headaches and worthless feeling. I hope things are going better for u. Just tnx.this forum.
I have just come across this forum and wonder just how many of us are sufferring. I had Stereotactic radiosurgery (similare to Gamma Knife) to treat a benign but growing tumour in my occipital lobe. That was November 2010. At frist things seemed fine, taking the dex and anti convulsants but then i started to have sight problems. To cut a long story short my brain swelling was so bad that I had to have a 9 hours emergency surgery in May 2011 to release the pressure. This has resulted in a bone flat and my brain having to live partly on the outside of my skull - 6 inch x 5 inch of skull missing. My surgeon has been brilliant and my radiotherapist can only offer that I am unfortunate and that mistakes have not been made - I just had a terrible reaction to the treatment. Here I si, like others, taking Dexamethason - tried to wean off but it is masking so many other symptoms that it has not been possible, Keppra (google Keppra rage - not a nice drug) and various other medications. What did I lose, half my sight, a large portion of my skull, my driving licence, my indendance, my job the list is endless. For all that I have amazing family and friends so count what I still have. My question is how can this have happenned and why cant I get the answers to what will happen long term and why the swelling just wont go down to allow them to put a plate in my head. Any suggestions guys?? I am from the UK
The dex itself may be causing some of the symptoms - high doses can cause steroid induced Cushing's - while it does reduce the swelling, it can cause a lot of emotional and nasty side effects to the bone, eyes, muscles and impair healing...
Miffy - Swelling can take a lot of time and the wean from dex when you still have the swelling may mean that the swelling will not go down. I think they *sell* radiation as an easy thing but I know a lot of people with unfortunate side effects that never seem to go down... I feel for you.
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