brain tumor front right lobe

We are awaiting brain surgery for removal of a tumor in the front right lobe. My boyfriend is only 35 years old and woke up to convulsions in the middle of the night. He was induced into a coma and put on a life support machine. The outcome was a 1.5cm tumor. We live in Spain and we have been waiting for an operation over 4 months now. We had an appointment at the hospital on November 14th for the pre-anesthetist, which was nearly 2 months ago but still have no date for the operation. Has anybody else been put on a waiting list and any idea how long this normally takes. Has anybody got any idea of operation time and recovery time?? please let me know of any stories, the longer this goes on the harder it becomes... x

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Dear Ellejaybat:

I had a similiar experience, had a seizure in the middle of the night and had a craniotomy to remove a Grade 2 Oliodendroglioma about two weeks later ( seizure was on June 9th, surgery June 27th). Mine was located in the left frontal lobe. The thing about brain tumors is what type, what grade and location, location, location. Frontal lobe is most common for Olio's which it sounds like your boyfriend might have. The single most important thing you and he need to do is become your own best advocate. Research online, contact others with same condition, call long term survivors and don't be afraid to ask for help or advice. The fact that he's had to wait so long is probably a good sign. Spain has socialized medicine, correct? That means care is rationed with the most serious going first. Has any of his doctors told you what they think the tumor is? If not ask! I would also encourage you to get second and third opinions. Duke university here in the US is one of the best brain tumor treatment facilities in the world. You can contact them via the internet and self refer to them, the head of the program, Dr. Friedman will get back to you. The link is: www.cancer.duke.edu./btc/ The surgery itself is not bad at all. I'm 54 and in pretty good shape. I had the surgery on a Monday morning and was home Tuesday night. Tell your boyfriend to get himself into the best possible shape and to go in with a positive attitude. The worst part of the whole ordeal was that I was not allowed to drive for 6 months due to the siezure. Otherwise it really wasn't so bad. I was actually back at work within 4 weeks, I'm a Chiropractor. Last week I had a bad cold/flu and I can honestly say I felt worse with that than I ever did with the craniotomy!! Call me if you would like to talk to someone who's been throug it recently and I would be happy to speak to you and/or your boyfriend.

Mike Purpura 404-202-4049

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Mamike's post is very well stated. The craniotomy and recovery is not as difficult or risky as the treatment (chemo, radiation, etc.) that follows it. A few days to a week on your back in a hospital followed by some careful "take-it-slow" time at home for a week or two thereafter is typically all that's necessary to deal with the craniotomy itself.

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It's unusual that a post makes me smile but Mike's did. How can someone go through something as traumatic as brain surgery & still feel that not being able to drive a car for 6 mo is worse? My husband felt the same way though. Having me drive him around was torture. I guess it's a loss of independence.

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Wereone:

I truly believe my life was in more danger when my wife was driving me around than when the surgeon removed the top of my head and dug around my grey matter!!! ) Just kidding (but she is not the best driver in the world)

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My husband bought a shiny new truck shortly before his seizure. I rolled over more than a few curbs as I got used to driving it. Oh well, we have to find some humor in all this.

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Well thanks guys we needed some cheer up x

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It was about 3 years from diagonisis to surgery. My tumor was getting bigger so out it came, same Oligo II in the Rt; frontal/temporal area. That was in 2010, 52 years old. I've had a few seizures since, mostly simple partials. All in all it's not to bad, think happy thoughts.

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Dear Ellejay: This is the post I put on my facebook page after I returned from the hospital. This might give you and your boyfriend some idea of what to expect. As I said earlier, it really wasn't that bad. The best advice I can give you is if the ICU nurse offers you some Morphine-TAKE It! Best buzz I've ever had!

Well boys and girls of the peanut gallery I am home sweet home. It has been one hell of a week which I will try to explain to you all in 100 words or less. As you all know by now Monday morning I went into Emory hospital for brain tumor removal surgery. At 7 AM I was wheeled into the pre-op area which baiscally is know as " the torture room". This is where they strip you naked, make you put on a ridiculous backward gown and then proceed to stick a tube, hose, needle or pin into every one of your body orifices and then each and every vein. Fun! Good Times! Let me mention one thing here: the foley catherer: This is basically a garden hose which they ram up your wee-wee all the way up to your kidney. This is to insure proper urination-or so I'm told. I believe it's training for the skin heads- but that's just me. So back to the surgery. After they give me some happy juice I'm now feeling no pain and gladly suck onto the oxygen mask that they place in front of me as they tell me "breathe deep" And I do and I'm out. I then wake up in post op feeling like I've been kicked in the head by a mule and with the scar to prove it. The next 24 hours are basically a dream with people coming and going, friends stopping by, a few sessions of puking thrown in for good measure and some incredible neck pain. As it was explained to me they put a harness into my head to keep it straight during surgery with no regard for comfort. Aint that nice! For the next two days I have to suffer so that they can get a clear shot at the tumor!!! WTF!!! So by day two I'm starting to feel a lot better, so much so that I get up out of bed and start walking around the room, which apparently in ICU is frowned upon. BY the way ICU doesnt't stand for intensive care unit. It stands for Interupted Constantly Until you leave. I'm mean constantly! Every hour, or so it seemed someone is sticking me, draining something, checking my blood sugar???????, giving me happy juice, drawing an IV or simply yanking on the good old foley- why I don't know. I'll tell you what , the ICU is no place for sick people people and I let them know that so they agreed to move me down to the third floor, regular room, for stage two of my recup. But I had other plans. I put on my shorts, my new sneakers and a crisp new tee shirt and walked down , which again is frowned upon in the ICU, and let everyone I was feeling good enough to go home. The resident came in to give me a post op report, said he had just looked at my post op MRI and it looked execllent, no sign of the tumor, just a little blood which was normal. I then told him I was ready to go home if he was ready to release me and he said go for it. I 'll sign the papers, Your nurse here wil go over everything with you and then you'll be on your way. By the way the care truly was outstanding. The nurses were the best, the care second to none. If you ever have a need for brain tumor surgery I highly reccomend Emory.

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You're funny

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My prayers are with you both! And yes location is a major issue in the removal of the tumor. One of mine was rt rear fist size on top of the brain. The second was sm and located under the 1st. Docs said it was too deep and will not even attempt to remove it! Seizure was on 12/10/10 and surgery 12/13/10. Upon removal of the large one, the small one came out with it (praise God)! On 1/3/11 we were told it was GBM IV! As of today all my MRI's show no new growth at this time! All my prayers are with you

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You can send this doctor MRis and he can see if your bf can undergo laser surgery http://www.rwjuh.edu/laser

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Ok damian has now been admitted to hospital as he has been rapidly losing weight and deteriorating. He is looking at spending about a month in hospital to prepare him for the op... However after 4 months of going through this he decided to drop a bombshell on me yesterday and tell me he did not love me and he did not want me to go through this with him anymore.. Do I believe him or is this a symptom of all he is going through? I don't know! Hurt and confused x

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I am so sorry to hear this! More than likely he wants to protect you. It is a natural to push your loved one away! I have pushed my wife to the brink. Treated her like she was dirt. Its been about a year and she is still here by my side today! I have just begun to realize what I was doing to her and have since changed. No matter why he is pushing, always be there. He will say things that will cut deep,it is the affectts of brain tumor. I will continue to pray.

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Dear Ellejaybat,
You are going through a really lousy time and I am sorry this is happening to you. You sound like a really good person who does not deserve this.

Brain tumors can definitely affect the personality. They can put pressure on parts of the brain that enable people to think differently than they normally would. Based on my experiences, they also can cause the person to be more tense or hostile than they otherwise would be without the tumor. It is not a certainty that you should take what he has said personally. It truly could only be the tumor talking.

A brain tumor patient needs their immune system to be in tip top shape. Their immune system ( and everyone's for that matter) is affected, in some degree, by their social support system. The greater the interaction with others, the greater the potential for a positive influence on the person's immune system. The very last thing that any brain tumor patient needs is to be permitted to curl up all alone to "lick their wounds." Once they (or any of us) become isolated from others, the outcome is generally very poor. In times gone by when Damian might have whispered loving to you "I just can't live without you" - he might not have known just how true that statement is.

Based on all that, you could take the position that (a) it was the tumor who told you it doesn't love you anymore, not him (b) he still really needs you, more than ever before and (c) no matter what the tumor tells you, you are sticking by his side. I realize that is all very, very hard work because it basically means you will have to ignore your own feelings and wants and needs for a while - could be a long while - and allow them to be trumped by him and his needs. Not everyone can take those positions. Unfortunate percentages of people leave their partners (even those to whom they are actually married) when confronted with horrible diseases because the leaving partner just does not have the strength to deal with the challenges. All of us have frailities.

But there are things you can and should do if you aspire to stick with him and ignore the words of the tumor. Even doctors in operating rooms don't take on tumors alone - there are always other doctors and nurses there - and you also should not take your fight with this tumor alone. You are doing the right thing by reaching out to others. (That is actually a sign of inner strength that you did that; weak people would have simply cried and caved.) You should continue reaching out. Plus, you also need to be taking care of yourself through exercising and watching what you eat, if you aren't already. Plus, I strongly recommend daily prayer for strength. Reading Psalms that address times of calamity (like 55, 56 & 57) can help renew you each day and give you the strength you will need through this.

All that you have already done and all that you are doing will only change you for the better in the long run.

My heart and thoughts are with you and Damian,
Jana

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Jana, thankyou so much you have been a great help x

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I am so happy to be writing this message, Damian had his surgery to remove his tumor and when they opened him up they found that the tumor was a lot bigger than expected with a cluster of others around it. Fortunately the surgery went amazingly well, i think even the nurses were surprised just how well. Within 10 mins of Damian waking up he was joking with us all. He was back home within a week and back to work within 2 weeks. He is living a completely normal life already and its only been a few weeks since surgery. We went skiing last week and life is wonderful again. Thanks for everyone who supported us through this challenging time. God was on our side..... xx

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Praise Him!!! This is absolutely wonderful ews! Congrats to you both! I will continue o pray for continious healing. May the Lord both.

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Great news, congratulations to you both! Tell Damian he has had his wake up call, now it's time to get back to enjoying his life, perhaps with a new enlightened perspective! Life is Good, enjoy every minute! By the way what was the tumor type?

Mike

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My sister had brain surgery on 5/4 and is diagnosed with stage 4 GBM. She is beautiful, smart, and in great shape. Is it helpful to go to Duke Univ. if you have advanced cancer?I appreciate any advice.

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Miele,

Most people agree that it is important to go to a major brain tumor center. Duke is one of them. Others include MD Anderson, Dana Farber, MA General, UCSF, to mention a few. I would try to go to the one nearest where your sister lives, and maybe get a second opinion from one of the others.

Please don't believe everything that you read about GBM. It is a tough diagnosis, but there are many promising clinical trials and treatments out there, and more and more longer term survivors. My husband was diagnosed April 2010, and is still here and currently is feeling great. Not to imply that it's been a walk in the park. He's had almost every possible complication and challenge, but he was able to walk our daughter down the aisle last year, and will become a grandfather later this year. I've heard of 5, 10 plus year survivors.

Encourage your sister to have someone with her at all doctor's appointments, as it is really tough for the patient to remember everything that is discussed. Some people record the appointments so they don't miss anything important. I don't do that, but I do take notes.

I've found that caregiver and other support groups have been helpful for me. My husband currently sees a therapist, though it took him over a year and a half to decide to do that.

I wish the best for your sister, and hope that you will keep us posted on her progress.

Terri

w/o John, dx GBM 4/6/10

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