Post craniotomy problems

[blue_chapstick]

Hello reader,
I will do my best to keep this concise while giving as much information as possible. I had 2 craniotomies at UCSF( Jan 18th, 2006 and May 5th, 2006) for a left giant trigeminal schwanoma. It was performed at UCSF cause local neurosurgeons were unable to do anything about it due to the size and location. My neurosurgeon said it was the size of a grapefruit, and it was pushing into my brainstem. I had a shunt put in after the first craniotomy. Radiation was administered in 28 treatments for the remaining tumor(3 cm in size) that was left in the head which was attached to the brain stem, the doctors would only go so close to the brain stem during the craniotomy. Gamma knife radiation was requested, but denied due to the size and location of the remaining tumor. My face is numb on the left side and I wear an eyepatch to stop the double vision. I have constant ringing in my left ear.
The whole time since the surgeries, I have tried my best to be normal and work. I finished school in May of 07 and started working in Milpitas, CA at a hard drive company. I then changed to a sample preparation/r&d job in Pleasanton at the beginning of this year. I assumed that my problems needed time to heal, so I felt comfortable working and it would work itself out.
Three years later I still feel awful. I am always exhausted regardless of sleep(amount or quality). My short term memory is pretty bad. I feel like walking around is an out of body experience, like being in a daze. My focus is awful, so I don't like driving. I don't want to cause an accident that hurts somebody else, this is also very bad for being at work for obvious reasons. I have headaches, but they don't seem that bad. They might just have become normal, so I don't notice them very much.
I am currently going to a psychologist and a psychiatrist for mental problems such as anxiety, but not depression. I was referred there since my neurosurgeon can't find anything after a few tests, shunt study and mri. I have stopped working a couple weeks ago and either need to get disability from a doctor or resign and lose benefits. My neurosurgeon won't do it.
My questions, has anybody ever encountered long term problems like this? Is it possible for a craniotomy to be responsible for this? I had my head cut open, it can't possibly be guaranteed a person should bounce back from that. Is there any other reason for these symptoms considering the circumstances? Any additional information would be greatly appreciated. Sorry for the long post, but I wanted to give as much information as possible.
Thank you,
Survivor

[dincole]

I just had my craniotomy surgery this year {Arnold Chiari Malformation}. Since its been only a month, I don't seem to see a big change yet. My surgeon told me that my recovery will take awhile. The pain was actually worse prior to my surgery because it stays between pain level 8 to 9. Weakness, dizziness and headache is always present at this time. I just have a high pain tolerance since this is not the only condition I have. After I was discharged 5days after the surgery, 4days later we called 911 because in the middle of my sleep, a pressured chest pain woke me up. So they have found that I have developed a pulmonary embolism. And that was a good moved I've made they said because the blood cot wasn't that bad. When my neurosurgeon visited me the next day in my room, he just said that I made a good call that I have caught it early. But he's only a consult now. Then after I was discharged from that, 4days later, I was back to the emergency and have developed an infection. So I've been in and out of the hospital for about 3wks which I think is not good bcoz of all the radiation I've been going through every time I go in the hospital. But now since last week, I noticed my vision changed. I've been wearing glasses since 4th grade, and now there are times that I could see and read without my glasses and at times that I would need it. This is really weird bcoz it doesn't seem right. I've already went to my opthamologist and said there was a slight vision changed, prescribed me some eye drops and steroids. And he said that I would need to see my optometrist to make sure I get my eyeglasses updated. Now all day, I've experiencing a ringing on my left ear. I'm not sure what I really need to do. But if it does wakes me up when I'm asleep, I will for surely go to emergency or call 911. Because that's how I caught my pulmonary embolism. So for everyone who gets bother or not sure of what to do, I suggest to seek for help right away.

[dincole]

I just had my craniotomy surgery this year {Arnold Chiari Malformation}. Since its been only a month, I don't seem to see a big change yet. My surgeon told me that my recovery will take awhile. The pain was actually worse prior to my surgery because it stays between pain level 8 to 9. Weakness, dizziness and headache is always present at this time. I just have a high pain tolerance since this is not the only condition I have. After I was discharged 5days after the surgery, 4days later we called 911 because in the middle of my sleep, a pressured chest pain woke me up. So they have found that I have developed a pulmonary embolism. And that was a good moved I've made they said because the blood cot wasn't that bad. When my neurosurgeon visited me the next day in my room, he just said that I made a good call that I have caught it early. But he's only a consult now. Then after I was discharged from that, 4days later, I was back to the emergency and have developed an infection. So I've been in and out of the hospital for about 3wks which I think is not good bcoz of all the radiation I've been going through every time I go in the hospital. But now since last week, I noticed my vision changed. I've been wearing glasses since 4th grade, and now there are times that I could see and read without my glasses and at times that I would need it. This is really weird bcoz it doesn't seem right. I've already went to my opthamologist and said there was a slight vision changed, prescribed me some eye drops and steroids. And he said that I would need to see my optometrist to make sure I get my eyeglasses updated. Now all day, I've experiencing a ringing on my left ear. I'm not sure what I really need to do. But if it does wakes me up when I'm asleep, I will for surely go to emergency or call 911. Because that's how I caught my pulmonary embolism. So for everyone who gets bother or not sure of what to do, I suggest to seek for help right away.

[mattramzzz]

I underwent a successful craniotomy, in 1987. Many years later, in 2004, I began using voice recognition software for note-taking and composition of written work.As well, I recorded much of what I transcribed with the software, making it possible for me to capture all of what a given situation offered.

The recorder I used linked/s up with my computer and provided/s me a visual display of the actual minutes of the recordings. After having recorded lectures and conversations and reviewed the tapes, after I uploaded them to my pc's desktop, I was able to experience a massive lessening of the burden on my stroke- and craniotomy-affected and my short-term-memory-deficit began to wane.

I used a set of headphones, connected to a microphone (Dragon NaturallySpeaking!), in the place of transcribing notes by hand. The ability for me to, merely, speak what I heard from off the tapes and have the words I spoke flash up onto my computer's monitor streamlined the process for me, dramatically lessened the toll note-taking took on my endurance and, to boot, IT EVENTUALLY CAUSED MY MEMORY DEFICIT TO WANE!. I used the software, all the way through my Master's program, while working full-time, and maintained an extremely high grade point average.

[Snazzytee]

My plate (aka dogbone) is on the right side of my hairline and my neuro actually told me that i would prob have to get a "half" face lift i didnt even know that existed! Its so depressing I have no family support everyone has died but my mom and she isnt supportive at all!

[Snazzytee]

YES My head is always hot its like my temp doesnt regulate in my head anymore!

[Snazzytee]

Hi i had a craniotomy in 08 and I have been experiencing alot of the same symptoms as you are.  I still get awful headaches that nothing relieves and the only thing that seemed to help as weird as it sounds was to have someone squeeze my head!  Then one day when I asked a guy friend to do that we heard a pop and now where the titanium plate is (near my forehead) and i believe a screw has literally come loose and my neurosurgeon refuses to see me bc of an outstanding bill.  My short term memory seems shot and lately my vision and balance seems to be getting worse.  I feel dazed alot and I am going to see a psychiatrist tomorrow so wish me luck!  I have applied for disability in hopes that maybe they will send me to a neurosurgeon and hopefully get that MRI I have needed for sooo long!

[blue_chapstick]

I understand the haircut thing, I usually tell them before they start. I have a strange set of bumps that are pretty big, the shunt, and a soft area of missing skull. If it's a woman, she usually gets the creeps for a second, then all is normal. As for the piece of missing skull, it's very low. Right behind my left ear. I've never had a problem with it. Obviously I don't do any dangerous activities, but it shouldn't be a problem. I dunno, I just trust that the doctors used good judgement with it. I read a paper that detailed the surgery step by step, at least I tried to, and the language seemed so far from English that I don't question their decisions. In my case, I was also used for research so you have to go with it. They're trying to learn what does and doesn't work. The stomach fat may be part of that. Also, the shunt was part of that. I was origninally not going to get one, then the guy across the hall in the ICU that had a very similar surgery to mine went into a coma following surgery. They thought the lack of a shunt for him may have caused it, so they decided to give me one though I was fine without it. I don't have the knowledge to question it, so you just go with it. I truly believe they had the best intentions which made it easier to go along with everything they did, not that I had much of a choice.
As for the shunt, I can't feel it. It causes no discomfort and I love letting people touch it and watching the reactions. I don't like them touching my feet though, lol. The only problem I have with the shunt is when I get my hair cut short, it creates this unusual bump where the hair sticks straight up and doesn't listen. It goes away when it grows out a little, I rarely cut it that short anyways.
Is sounds like your doctors are trying to take the easy way out by labeling your headaches the way they do. Stuff has changed in your head and they can't treat your situation like a normal person that has headaches and no craniotomy. Doctors don't have a lot of experience with these specific situations and tend to fall back on past experience forgetting all the variables involved with special cases like us. I feel that pressure you mention on a daily basis, all day. Not much pain comes from mine, but it feels like a huge roadblock for my thought pattern. I have a lot of trouble reading and taking in the information I just read. I have to read things multiple times to get anything out of it. My short term memory is also terrible.
I see my psychologist at 3 today, and my psychiatrist wednesday. Hoping for a good visit with the latter.
Hope all is well.

[brainpain]

i think its great you are comfortable in the way you look. i do think scars tells what we have been threw. i know every time i get my hair cut i get oh what happened.my scar is above my left ear up to the top of my head and curves to my hairline. it has taken me forever to train my hair. i know theres a differance in the way people look at women without hair. i swear i wanted to make me a shirt to wear everywhere. i wanted to write i had a brain tumor and had a crainotomy. i wish i could feel so comfortable with myself as you do. i know as a  mom how it feels for my kids to point and say things like that. i really think its great that you dont get upset and have that attiude towards kids. i know alot of people would hate the world if they went threw what you have. my son plays football for his school and there called pirates. i just know my little girls would ask if you was from the football team. i dident know they would take fat from your stomach to fill the void. i have had family to touch my temple where it sunkin . is it dangerious to have a piece of skull missing? i am a curious person and would feel your skull. its crazy but i get more creeped out touching feet , oh i cant stand feet lol. i havent had a shunt but it sounds uncomfortable. i had headaches that feels as if my head was being squeezed . i was told it was from stress and it was a pressure headache. i have learnt to deal with the pain and keep it hide from my mom. my mom gets very worried im going to have a seizure and i just need to drop everything .  the eye swelling is from cluster migraines. have you went to a migraine specilast over your headaches? i have been and they have helped me some. i really do think its great that you feel so comfortabe and i think i will try the psyc . i will see what i can find. i think if i can feel good about myself again my family would support me. thanks for your support and advice. its good to talk to someone that knows what im going threw!! oh congrats on getting your dissabilty and being able to relax and be yourself. thanks,brainpain

[blue_chapstick]

I appreciate your kindness and am happy that I can relax on disability. It put so much stress on me to continue working through this.
As for being in public with my appearance, I enjoy it. For some strange reason I enjoy most of my aesthetic abnormalities. My numbness is very similar to yours, but it extends back further. This has resulted in my left eye not moving properly causing double vision. I have worn an eyepatch since my surgeries in 2006. I get quite a few compliments on it, and I'm guaranteed to have a kid point and say "look mommy, a pirate" every time I go to Target. Parents get embarrassed and try to hold their kids back, I tell them if they don't do it they aren't normal. They are innocent and should be curious, I could never judge a young kid. I also shaved kept my head shaved for quite a while following surgery and remember all the stares following this. My scar, which starts in front of my ear and makes a wide circle around my ear all the way below my hair line in the back of my head, is cool. I wanna shave my head again now that I'm on disability and don't need to look presentable for work. I like the tube coming out of my head that can be felt down all the way to my chest. I don't mind the large piece of skull missing, I make people touch it if I can. They usually get creeped out. I have to scars on my stomach which I also like. One for the proper positioning of the shunt in my stomach cavitiy. The other where they took a large piece of fat out to put in my head so there wasn't a large void in my head after removing a huge tumor. Btw, you can still see the large chunk of fat every time I get an MRI. I understand the social differences between men and women, and this is not so cool for a woman. At the same time, you learn to not be concerned with other people's thoughts. It is easier said than done, but once you get to that point it makes a lot of sense and you'll relax a bit more. If I don't know you, I don't care.
As for my headaches, they are predominantly positioned directly on my forehead. I definitely have that feeling of pressure all over my head, like it is being compacted on all sides. I have this feeling daily, though some days worse than others. Very uncomfortable, but I have learned to deal with it since nobody seems to have any idea what to do about it. As for the stress involved in your situation, go see a psychologist. Not much can be done about your physical state as of right now, but somebody trained in talking about stuff like this could really help. Talk to your insurance company, it should relatively easy to set up and you should have a few located very close to you. Don't stop exploring your options and hopefully you can find some quality people to help you. And, don't ever let depression enter your life. That is the ultimate downer. It is difficult to stay positive, but you can do a lot of damage with depression. It is okay to be frustrated, but use that to your advantage to keep pushing forward and getting better.

[brainpain]

im happy you got your disaiblty. i know how much we think people think of us. im glad you are working threw that. i went to walmart a week after i got home. i had my head shaved because they never washed the blood out of my hair. i couldent believe it, i had matted hair and dryed blood in my hair. i went to the store to get out the house and i got so imbarresed people pointed and laughed at me .now one side of my face looks different and a little older. i do have numbness on the left side of my face. my numbness is from my forehead to the bottom of my cheek bone to the ear. my neuro did the needle poke test all over my face and thats where im losing feeling. i have gotten dizzy and woke up on the floor a couple times this week.i have been under alot of stress and hope thats the problem. do you ever feel like its your whole skull is hurting? i do some days it feels as if my skull is being squezzed and it is painfull. it does help talking to someone that knows and understands what im going threw. with all the symptoms and pain its so confussing when docs act like im drug seeking or just wana be sick. im happy you are working threw this and making progress. i do hope you get the treatment you deserve. i know you are a strong person and do what it takes to get better. i think you are lucky to have the support . sneding you support and prayers

[blue_chapstick]

Not much has changed with my condition. I just got my disability ok'd by my psychiatrist. I see my psychologist on a regular basis and he has helped me get rid of the incorrect assumptions I have about what people think about me. He helps me get a positive outlook and tells me what people really think, and to stop assuming so much. I told him I've made progress, but I can only go so far until my head gets better. This would only be magnified by doctor and family problems. I can't believe a neurologist and family could be so insensitive towards you.
I understand how your mom feels, my mom can be very similar. This is not a bad thing until she greatly over does it, but it's hard for her to turn off that maternal instinct.
Like you, I get frustrated cause I don't know where to turn to get answers. This probably will not change since they know so little about the brain.
Do you have any numbness? I just started  noticing my headaches, though they've been there for a long time. They are on the numb side of my head, so I didn't pay much attention to them since I could barely feel them. Now they have become much more noticeable. It might be a reaction to my new antidepressant meds, I dunno.
While I can't give you much advice medically, I can say a therapist/psychologist that deals with cognitive behavior therapy may help you deal with this situation much better. Most psyhologist's should offer this. They can help you deal with things, and sometimes it's just nice to have somebody to talk to. Your situation makes me feel awful and you don't deserve it. I hope you feel better soon.

[brainpain]

i understand i do need to take charge of my own health. i have really been thinking about it . my father-in law just died and i have been stressed out.i have so much going on its hard to take care of myself. my eye has swelled up and i have been getting dizzy. i get sick and feel so weired and dizzy i cant walk i just lay over till i feel better. i found me a neurologist but i cant see her for 3mnts. i know it sounds bad but i hope my head has the bleeding and the swelled bubble when i go.i went to my migraine specalist and now i have to give myself shots during the cluster migraines.i have been talking to my mom about what im going threw and she told me whatever i thinks best. i do have to be carefull what i let her know she worries about me alot. i know you understand this one i still want to be treated as an adult. she wants to treat me like i have to be watched and cared for like a child. how have you been feeling? how have your psyc visits been going? i do hope you get your confidence back. i dont understand doctors. i wish they would try to understand and help us explaine what were going threw. i went to a neuro and he made a fool out of me. he acted like house and would surprise me with questions like how many nickles was in 2 dollars . he seen me before i had my sugery and i thought he was joking and he laughed at me . i do hope you get the treatment you need . i just wish it wasent so hard to explaine what were going threw . i do hope you start feeling more confident. to talk to you on here you seem to be a great person.let me know how your doing. brainpain

[blue_chapstick]

No offense to your family, but they are way out of line and don't understand the reason for psychological treatment. It frustrates me when people talk and give advice(that they ignorantly think is the best) about situations they are not anywhere near qualified in. It is not to dwell on the problems, it is to be proactive in dealing with them. You have been through a huge situation and the psych doctors are there to help you deal with this. Use that to your advantage, you shouldn't have to try and reinvent the wheel. These doctors specialize in situations such as yours and give you more help than you think. You might just have to go against your families advice and do this anyways. When it comes down to it, it's your life and not theirs. It is nice to make others happy, but if they are misleading you don't be afraid to make you own path.
Do you have a primary care physician? Your regular doctor should be able to refer you where you need to go. If not, get a new doctor that will. You may not get referals to similar doctors from neurologists, they have egos and this might make them feel like they aren't doing a good job. Not sure on that, they may have other reasons.

[brainpain]

i have talked to my husband and parents about talking to a psychiatrist. they tell me it wouldent help to dwell on this. my family thinks it would just depress me more to have to talk and relive it. i do agree with you it is a life changing sugery. i have tryed to get second oppions. i have asked my neuro and my neuro surgon and my endo to refer me and they dont.i have called different neuros and endos and i have to be refered before they will see me. my weight gain is in my stomach . i have tryed walking on my treadmill ,i got dizzy and hit the floor. i go to a migraine specalist the end of this month and will ask for a referal to a neuro. im so glad your friend isent letting seizures stop his life. i have lived a normal life as long as i take my meds. i have to stay away from flashing lights because they bring on seizures. i was worried i was going crazy because i felt that way. i feel better knowing im not the only one. i understand how hard it is to explaine how it feels. i sometimes get pressure in my head and thats when my scar bubbles up and bleeds.my eye swells up and i get awful headaches i even lost my vision for couple seconds. i have tjhe dizzyness to and i feel in a daze and numb. it is very hard to go threw this when my family thinks it just an excuse and sick of hearing it . i hope you have very good support . i know my tumor is gone and your still going threw alot. im glad you have the support and your family is there for you.

[blue_chapstick]

It is an awful feeling to be disregarded by doctors, but even worse by family. I wonder why your family assumes people will be fine after having something as severe as this happen? Have you tried talking to a psychiatrist to help with the emotional side of things? You went through a life changing procedure and it would probably help to have somebody help you put things into perspective. They should be able to help with the depression, which can only hold your recovery down. Have you tried getting second opinions? One doctors opinion is usually very biased towards their personal experience.
My friend has only had one seizure and he had no symptoms before or after that occurrence. He has continued with life, work, commuting, getting married, etc.
About your weight gain, is it all focused in your stomach? Or is it proportional throughout your body? I have gained no weight, but my stomach has packed on fat like no other. I have a nice bulge, but everywhere else looks the same. It may be just the fact that men pack weight there the older they get. It sounds very discouraging when doctors can't sound intelligent and use their education. A comment as simple as lose weight would lead me to a vote of no confidence. Again, change doctors or get second opinions. I thought we paid doctors to give detailed scientific orders.
On your feelings of the old you trying to break out, I have almost identical feelings. I know what I was like before this went down, but I'm unable to break that person out of hiding. I feel like I live life in an out of body experience, I know this isn't the real me. My confidence has also been zapped because my head feels so weird. I find it near impossible to explain what I mean by weird, but I know it doesn't feel right. I feel constant pressure in my head, mild headaches, dizzyness, and a general feeling of something holding back my thought process. I understand the doctors blowing you off, they have a general belief that if they don't believe it that it doesn't exist or is not a problem. The family is the part that almost offends me. These are the people that are supposed to be there for you, providing emotional and physical support. It is lame that our problems are not visible on the outside and it makes me upset that these people are so simple minded. Again, psychiatric treatment sounds like a good idea for you. You can refer yourself if your doctors don't want to.

[brainpain]

hi blue_chapstick,dont worry about taking some time before you reply. it sounds like your going to be very busy. i have asked my family doc about the sores and get nothing. my neuro left to another state. i dident know till i tryed to make appt. i dont get good medical help. the docs are either scared of my problems or just dont believe me.i had my crainotomy done at uk in lexington,ky. my neuro surgen sees me once a year and wont answer any questions other than if my tumors comming back. my temple is sunken beside my eye into my hair line . it is about the size of a half dollar and i can feel one of the screws.i had all my hormones tested over a year ago and all was low-normal. my neuro-endo tells me just lose weight. i feel lost because i dont get taken seriously. my neuro-endo was hurt and hadent came back to his practice and wont be back for a year and he wont refer me so im waiting.i had my crainotomy and got pushed aside. have a mri once a year and then see my neurosurgen. i got bloodclots after my surgery and layed in a hospital room 24hrs before i was treated.i have tryed to take charge of my health and the docs think im depressed or im a drug seeker. i just have to live and deal with it to.i live in ky and it does get hot here so i sit inside to stay cool. my neuro said my hypoalmus was probley damanged from the tumor . it is hard going threw this with 3 kids but i wouldent change a thing. i do take care of them mostly on my own .my husband just dont want to listen and belives im fine because i look fine. i can imagin what you are going threw. i dont understand why your neuro dosent think its anything to worry about.i agree with you it should be checked out. i cant inagin having a piece of scull missing. it is very hard to explaine to doctors ,friends how and what your going threw. i want you to know your not a wuss and i think you are a very strong man to go threw what you have !! my family is tired of hearing my problems and they dont understand how we change after surgery. i have took dilantin for over 20yrs. i have had to increase the dosage up to 400mg . i have tryed different types over the years but they never controled my seizures. i can rember the names of them even the off brand dilantin i have seizures in a week. i dont have any long term effects from it. i even took dilantin while i was pregnant with all 3. my kids are all fine and dont suffer seizures. the bad thing if dilantin stops controling my seizures i cant go any higher on dosage.i find that lack of sleep and being stressed brings them on to.does your friend have warning signs before he has one? the weight gain is stressful because i look 5mnts preg. i have lost all my confidence in myself. my family thinks im just lazy because i use to weigh 130pnds and now im at 155pnds. this is a weired question but i have to ask , do you feel like the real person is inside trying to get out?i feel like the old me is there ,the confiodent ,strong,fun loving woman is there but i cant get her back. i hope i dont sound crazy. i told my mom and husband that and they just looked at me like i was losing my mind. i just want to know if someone that has went threw the a crainotomy feels the same way. im glad you are getting the care and help you need. i know thats very hard to get.keep me posted on how your doing.

[blue_chapstick]

I apologize for taking a couple days, had to bookmark this site to remind me to follow up. I feel the normal crappy that I feel on a daily basis. I have been seeing my psychologist and have the psychiatrist appointment soon, so far the psychologist has pushed in the right direction of trying to live with this since it will not change any time soon. Though, this will take a while to perfect. I have had no issues with sores on my scar, it has just turned into scar tissue with no issues. What has your doctor said about this and why it is not healing properly? Where did you have your surgery done? Did they ever mention getting a shunt?Your body not cooling itself is a very scary feeling. Hopefully you are not in one of the hot states. That is crazy that your body temp has risen a degree. It may not seem like much, but a fever is always only a couple degrees away. While I don't have a wife/kids, I feel like this will prevent it from happening since I don't feel healthy enough or have the energy to put into something as involved as that. It ***** to have this happen to you after having a family and to know it is stealing moments with your kids from you.
Sunken temple, how big and how sunken? I have a piece of skull missing, size of a half dollar, behind my left ear. This was sunken in since surgery, but has recently ballooned out and become sensitive. I told my neurosurgeon, but he didn't see it as anything important. I did, something has clearly changed and it should be checked out.
As for weight gain, I don't have any. I definitely notice the weight being reposistioned, though. My stomach has gotten much larger, maybe just being a guy. I stay skinny everywhere else, but my stomach just goes on it's own. I was proportional everywhere before this.
The friend takes anti-seizure meds and apparently they are supposed to work great. He has had no recurrences in the last year and has continued life as normal. Hopefully this doesn't come back to bite him later. What has your doctor said about anti-seizure meds?
As for the outburst of anger, not sure about that. It's almost like your not in control of your emotions since your bodies chemistry has obviously changed. Your body temp is a clear example of that. I have just turned into a social reject since I always feel like **** and have no confidence.
My craniotomies were very long. The first was 14 hours, the second 15 hours. No problem for me, being out the whole time. It was tough on the family with the waiting game, I think my mom took it harder than most.
I agree on the frustration with getting pushed aside because I also look normal on the outside, aside from the eyepatch. My symptoms are not easy to explain to others and they tend to think I blow it out of proportion or I'm a wuss. I understand the physician problem. I went to mine for years before the tumor was found telling him what I was feeling. I told him I feel like somethings in my head, you would feel a grapefruit sized tumore. My balance was going and my eyes were having a hard time focusing. He blew it off and diagnosed me as depressed. He thought that there was no way somebody my age, 24 at the time, could have a tumor. I'm not an angry person, but I have a little bit of animosity and will not be going back to him. I lost my insurance because he blew it off for so long. Full time student insurance through parents stopped when I turned 24. I had to schedule and pay for the mri out of pocket. Luckily I got county insurance before the UCSF care and surgeries which covered it as long as I was referred by a county doctor. It is frustrating getting overlooked, but we pay the price for all the people that are weak and blow their situation out of proportion. The people with real problems often fall into the same class as them since people don't understand what's actually going on.
One thing I am happy about, I'm not depressed. I don't know why, I would think most people in my situation would be and rightfully so. I have found it to be very counterproductive and hurts you worse than the situation causing it. Keep your head up, know you have kids that are depending on you and they need you to be the best you can despite how difficult it may be. Very interested in your response.

[brainpain]

hi blue_chapstick, how are you doing? i get sores on my scar about the size of a nickle. the sore is in the deepest part of my scar and it bleeds. i get the sores about every 4mnts. i cant stand any heat at all. i cant lay out or play outside with my kids anymore. i was told by my surgen my body cant cool itself anymore.i to find it so hard to explaine what and how i feel. i look the same just got a sunken temple and a puffy eye.i have gained about 25pnds and i cant lose any weight and feel depressed. i had a grand-mal seizure while i was driving last thanksgiving with my girls in the car. i know how your friend feels on that , its very scarry. i have very bad outburst of anger , never had anything like that before my sugery. i have been diagnosed with chronic daily migraines and suicide migraines. my normal temp has changed to 99.6 all the time. do you have ant temp change ? my surgery lasted 71/2hrs.how long was your sugery? my family doc dont take me seriously because i look so called normal. my endo just sees me once a year and just tells me "lose weight." im not on any hormones but all my labs are low normal. do you have any trouble getting your doctors to help you and listen? i hate that your going threw this but it is good to know im not the only one. wishing you the best.

[blue_chapstick]

Hello Brainpain,
It's nice to hear from somebody else going through this. It's very difficult to describe to the doctors how I feel. Sometimes impossible to characterize the strange symptoms, further making me look normal to everyone. I wish I had a good way to explain this to other people, still working on that. Most people can't tell there is anything wrong with me since it's all internal, aside from the eyepatch which stands out like a sore thumb. Your symptoms are quite different from mine. Strangely enough, I've never had a seizure with my grapefruit sized tumor. I've only had a couple headaches, but they were bad. Put me out for the day, couldn't even watch tv. I don't notice any sensitivity to heat, other than the usual discomfort everyone has. I think this is what makes crazy surgeries like craniotomies so difficult, everyone comes out a little different. I definitely agree on feeling like a different person. It has totally stolen my confidence. I just started seeing a psychologist and have a psychiatrist appointment in a couple weeks. I definitely feel you on the dizzyness, my equilibrium is trashed. No snowboarding or anything like it. Not sure about the sores on my awsesome scar, Can you expand on that? I have a close friend with a very small brain tumor in a huge cyst. He had a seizure while driving a full car on the freeway. Luckily he was on the offramp and already slowing down. I try to keep these responses short, I feel like I could go on for weeks about this. I should write a book.

[brainpain]

sorry i dident tell you about the cant stand any heat . i sweat more than i ever have and my face stays red. do you have any of this?

[brainpain]

hi blue_chapstick, i know how you feel. i had a crainotomy in 06 to remove a 22mm pituitary tumor. my tumor was totaly removed but im not the same at all. i have left sided numbness on my face and get numbness and tingling on the top of my head.i have some dizzyness and sores in my scar.i stay tired and moody no matter how much i sleep or relax.i have some memory problems.my migraines went 10+ after my sugery . i just feel like a different person after. i have allways had seizures but after they have started lasting longer and im out of it longer.my neuro surgen told me i would be back up and ready for anything in a week. im still not back to myself and its been 3yrs. the worst thing i was sent home from the hospital after 4days with no meds for pain. my neuro surgen told my family i dident need anything for pain. i believe the neuro surgons dismiss any problems after sugery. i hope this helps you .