who has needed brain surgery.

I found out yesterday I MAY need brain surgery. One more MRI and a meeting with the neurosurgeon to tell me if I will need it. It scares me. How long did it take you to recover? how long was you in the hospital? Does your face swell up? tell me anything you can PLEASE!

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Hi.

My name is Bob. I am mostly in the sudden cardiac arrest group, but here also since the cardiac arrest left
me with an anoxic brain injury.
Anyway, I know someone who just had some brain surgery. It was the second time, and hopefully the last.
I can't recall her username on this site, but she is my friend on Facebook and I am going to tell her about you
in a few minutes. We are both night owls so she'll hear about it soon. On the bright side, since her surgery a
month or two ago, we have been playing on-line Scrabble. She is beating me silly, too! See? There IS hope!
I will get in touch with her right away, and get back to you, here. I'm sure that she will.

Also, I read your earlier post about your 7 year old son. As I fear the same thing may be in my grandson's
future, I was really moved. I do hope he's doing better. It is a strange thing, for sure, and it tears at our hearts
to feel so helpless. Perhaps sometime, we could talk a little about that and see if you recognize anything in
my grandson's behavior. The closest he's come so far has been "absence seizures", but after taking a lot
of money from our son and his insurance, the doctors have been oddly unwilling to diagnosis him! Now he
sees a psychologist who thinks that behavioral therapy is somehow appropriate. What a crock that is. I am
his grandfather and maybe his greatest advocate but I can do very little. It really hurts.
I pray that your little boy will get through this difficult trial and you will get the honest help that both of you
need.

My friend's name is Karen, and I'm sure she will get back to you.

May you and your precious little boy be blessed always,
Bob

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Thank you very much. I am sorry for your grandson. That must be so flustrating. I have been tearing my hair out for years trying to find out why he had such learning difficulties then this year the seizures started. When we see those that we love hurting it hurts us so badly

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Hi Gypsy Rose,

Bob has been a dear friend of mine for the last few years! I'm glad he told me about your post as he's right, I am recovering from my second brain surgery and I am doing very well!

My first one was in 1999 and benign in the middle of the left temporal lobe. That was a 'successful' surgery, but did cause me problems with multitasking, immediate memory deficit, depression, slight aphasia; in general I was no longer able to do my fast paced job in IT where I had a lot of responsibilities. My life slowed down and I went on permanent disability. I have two boys who I was very blessed to stay home with them full-time instead. Granted I wasn't getting the laundry done the same time I was trying to cook a meal, but I got used to the changes over time.

My second surgery was a re-occurrence on the front edge of scar tissue from my first surgery. Very small, and I didn't want my head cut open again. So I opted for Gamma-Knife. However, my doctors at that time didn't disagree or explain to me the risks I was taking and just did it. Well, 12-18 months after Gamma-Knife it is very common and important to watch for scar tissue growth, tumor inflammation, etc. I had my check-up MRI's and all were 'good' until one went bad a month apart. Suddenly this tiny re-occurrence had grown like pop-corn! I was immediately referred to Mayo Clinic for further assessment.

It had to come out. Lots of pathology reports from the first time re-done and discussion amongst the neuro-surgeon and neuo-oncologist and they determined I had to have the tumor/scar tissue and spot of necrosis removed. They could guess pretty close to what it was but admitted that until they saw it all under a microscope, they couldn't be positive. So LONG story short, I made the surgeon promise me to not remove ANY more brain tissue in the middle part of that temporal lobe or behind it due to speech. I said I'd rather live a shorter life thank-you than be a babbling ding-dong! (I'm being sarcastic here, but I was serious!) :-) He totally understood and agreed.

When I woke up from surgery and got through recovery and in my own room, I was in shock! NOTHING changed! I could still speak, spell, think of words (eventually sometimes :-)) and my memory wasn't any worse! I was so happy and still can't believe how blessed I was. I asked the surgeon one evening, when he stopped by to check on me, how I could go through brain surgery and not have ANY more side effects? He said he didn't want me to think I was retarded, but the first surgery basically cut off the pathway to the front of my temporal lobe and re-learned new routes, so what they took out this time wasn't really working much anyways!

I had to tell you my whole story because I wanted you to know that the science of neurology has advanced so much in even the last three years! I'm now on chemo for a Grade III tumor, which is a tablet I take 5 days every 28 days for a year. MRI's every other month now. My only symptom is nausea, which they have a pill for and fatigue, which is very normal. I don't fight the urge to take a nap when I can! LOL

I remember so well the first time I was diagnosed with a tumor. My only symptoms were morning headaches and one double-vision seizure while I was driving to work and I made it! My co-workers thought I was drunk. I said no, I have a family and don't party like that. I don't think I feel right, so off to the doctor and got a MRI and the rest is history.

Please don't take my symptoms or disabilities as a given or what you'll experience. It's all about location, location, location. Then it's all about educating yourself as best as possible, ask a lot of questions and get the best surgeon you can and ask if there's any alternative treatments! Today, there actually are!

In answer to your other questions...
*No I didn't loose my hair, the chemo doesn't affect it and they buzzed very little hair off before the surgery. So nobody could tell I had brain surgery. My hair covered it all up!
*Recovery was about 6-8 weeks were I wasn't allowed to lift more than ten pounds and to take it easy and rest a lot. After that I felt fine. It's the chemo now that makes me tired.
*I was in the hospital for three days. One full day before for final labs and scans, but only three in the hospital after the surgery. If you can get out of bed and walk, eat a bit, use the restroom and take your meds in pill form, you get to go home.
*My one side of my face did swell up for a couple of days... I was doing too much and ended up with edema, which went away soon as I rested more like I should have. :-)

I'd love to hear from you. If you prefer you can write me at crzydzy12@yahoo.com or here. This has been a great web-site for support of a lot of health issues that I've had over the years. Brain tumor wasn't the only thing I've been through. Friend me and you'll be able to read more about my history if you're interested.

But most of all, never give up hope. My theory on doctors is, half of them were the best in their class and the other half were the worst! Which doctor do you have? If you don't get a supportive and group approach to your brain, shop around. ((Hugs!))
~Fezz

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I had my noggin opened up back in March for a tumor resection. It turned out to be Glioblastoma, but that is for another discussion.

Being scared is completely natural and reasonable. To speak directly to your questions:

1. For recovery: I was able to walk to the bathroom with help the next day. It was a full 10-15 days before I was fully mobile and sturdy on my feet. I needed a full 6 weeks to return to work, but that was due to problems with my right eye not aligning after the surgery. Also, keep in mind that your results might vary widely from mine depending on the location of the surgery. Mine was right frontal lobe and they needed to remove some bone from behind my right eye due to the tumor. Within 2-3 months I was fully recovered, with the exception of sometimes struggling to think of words. It's kind of like an early on-set of "old-timers" disease.

Tip: If you don't have hand rails or something sturdy in your bathroom to hold on to now, I would highly advise looking into it before the surgery. Also, invest in ear plugs. You will probably be VERY sensitive to loud noise for some time afterwards and ear muffs will not be an option.

2. I was in the hospital for 9 days, but could have been released in 5. I had problems with a blood clot from the tumor that occured before the surgery.

3. Yes, my face swole up quite a bit, but again I had bone removed from behind my eye, so I looked like I was on the receiving end of a Mike Tyson beat down. If you are not on it now, inquire about prednasone or dexamethasone. These are both powerful, steroidal, anti-inflamatories that will reduce swelling and pain SUBSTANTIALLY. Also, don't be afraid to ask for the stronger stuff. The nurses would only give me tylenol regularly and I had to ask for the oxycodone or other.

BIG TIP: You may be different, but my most painful time was in the morning about 30 minutes after waking up. I would purposely have my wife wake me about 6 or 7 so I could take some pain killers before I got up an hour or two later.

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I know what having brain surgery is like. I had gone to doctors for over 9 months and just had a feeling that I had a brain tumor. I was always told that I was stressed, an over-achiever, a workaholic, etc. Had gone to all sorts of doctors to tell me that nothing was wrong. The only symptom I was having was dizziness. Well, after swearing like a drunk madman I got the MRI I requested. I did have a large astrocytoma. Had surgery and knew that something was wrong as I could think the words but not get them out. Was doing well and then got MRSA. That was diagnosed as an ear infection..almost died but got through it but I refused another brain surgery.

Went back to work 4 months and worked for a while but from the higher managers, (not treating me as disabled) they just were mean. I was a high manager and for over 30 years had done the job. I am still upset over having to retire but had to. Well, that's the negative part now here is the positive part.

Thank God I did not need chemo or radiation. I have come a long way but couldn't get sentences right and memory (short term) correct. The one thing I found useful is reading a dictionary from the start to the finish. Then music..That's what brought back my words. Music.

Brain surgery is dangerous but if you fight to live, you will. I wish I could get rid of anger over where I worked but I need to keep on thanking God that I am OK. I always have dizzy spells but not as bad as in the beginning. The one thing I refused from my doctor was pain pills. Tylonol worked. I always worry about people who are about to go through brain surgery but if you make it, you can make it better on yourself.

If any of you know how to get rid of anger, tell me!!! LOL But I wish all of you the best of luck and one can get through brain surgery.

Thanks for listening..

Michele

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i recieved a gunshot to my head and had to undergo emergency surgery to have the bullet removed. i was back to work withen two months. they shaved half of my hair, that wasnt to big of deal they removed "melon ball size" of my gray matter. and i was up walking a couple days later. the surgen told me that i was lucky another couple centimeters and we never would of had that discussion. good luck! if i can undergo emergency surgery and fair that well you should to

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