It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Who are you?
Replies to This Discussion
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Permalink Reply by Mandy Annear on -
Hi Kasi
Where was his tumour?
How is he following surgery>
I believe you're from US? I think they tend to operate more than UK.
Kasi Klimstra said:My husband had an MRI March 12 and we were told he had what was probably a glioma. We were told to be as aggressive as possible and he had surgery to remove it two weeks later. He was diagnosed with a Grade II Oligoastrocytoma. We are going in for his first follow up MRI in July and then every 3 months. I would at least get a second opinion and do what feels right to you. We were not comfortable waiting and watching because some gliomas can be very aggressive and without a biopsy it is impossible to know what you are dealing with. That is why we went the route that we did.
The only "symptom" that my husband had was a possible seizure at work. Nobody saw what happened. He was found unconscious by coworkers and rushed to the ER thinking he had fallen and hit his head or something.
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Permalink Reply by Kasi Klimstra on
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His tumor was in his right frontal lobe. He is doing very well now. He had very few surgical complications and was out of the hospital in 2 days! I am from the US and we were lucky enough to be able to go to the Mayo Clinic in Rochester Minnesota which was wonderful.
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Permalink Reply by Shari Bacharach on
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My name is Shari. I am a survivor. I am in remission for the 2nd time. Initially in 2003 when my tumor was discovered, I was also told it was benign but later found out that is actually slow growing. I had a partial resection surgery. in 2003 needing no treatments just continual MRI's for 5 years until it recurred in 2008. I had surgery again only I had 6 weeks of radiation and the chemo pill Temodar. After that I had 6 months of the chemo pill Temodar just as a precaution.
They need to be honest with her benign is not the correct wording. It's actually slow growing it should not be ignored. Agree anyone ? I have my quarterly MRI on July 5th so it is a continual process.
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Permalink Reply by Shari Bacharach on
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Kasi Klimstra said:His tumor was in his right frontal lobe. He is doing very well now. He had very few surgical complications and was out of the hospital in 2 days! I am from the US and we were lucky enough to be able to go to the Mayo Clinic in Rochester Minnesota which was wonderful.
Kasi My only symptom was a grand mal seizure but I had horrible headaches in the early 90's which might have just been unrelated since I still have them when it will rain. I also had poor memory around the time of my first surgery in 2003. I was in college and the last two years were a struggle to remember.
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Permalink Reply by Shari Bacharach on
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Mark , get a second opinion quickly! Myoriginal tumor was right frontal 2 cm x 3 cm.
Dellus said:I encourage the posters on this forum topic to research stereostatic radiosurgury and/or Gamma knife treatment for tumors. Once you fell you understand enough to discuss it with your neurosurgeon - do so. They may not propose this option if the equipment is not available in your locale. Look at this option even if you have to travel to get it. It worked great for me and was noninvasive and I had no side effects. These methods use focused radiation beams to induce a high dose to the tumor cells to kill or disrupt their ability to divide while sparing the normal tissue by making sure it receives a lower dose. Accuracy and procedure planning is critical. The method is good for treating small tumors and those that are deep and inoperable.
Mark Sipe said:Hi Beth and everyone :)
My name is Mark (30). I live near Windsor in the UK. I was recently referred to a neurologist by my GP following exercise induced migraines, dizziness, numbness with poor reflexes down the left hand side and rapid weight loss. This was on top of erratic blood pressure and an irregular heartbeat which I was under a cardiologist for.
Following my consultation with the neurologist I was sent for an MRI last week. The results came back this week and it shows a tumor, which the neurologist believes to be benign, on the brain stem. I am due to go to a neuro surgeon on Monday to discuss what can be done but I did ask the neurologist how big the growth was. He declared it to be the size of a large walnut, which he went on to say was "not that big" and "try not to worry" - yeah right!
So I am now sitting here wondering what would constitute a large tumor. OK, in isolation a large walnut is not that big. But in my head - which is not the biggest head in the world, even if it has been described as vacuous by loved ones in the past, surely isn't small. I guess I will know more Monday but if any of you could share some insight into what size a tumor needs to get to be considered large, I would be most appreciated.
Will let you all know how I get on and look forward to speaking to you all over the coming months.
Mark
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Permalink Reply by Shari Bacharach on
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I had sterotactic surgery for both of my surgeries. IT's brain mapping and as accurate as they can get. The head has pins screwed into this scary contraption. The camera is inserted into the main artery to the brain for pictures and a biopsy,a CT nad MRI are taken with the contraption still attached. OMG painful removal.
Shari Bacharach said:Mark , get a second opinion quickly! Myoriginal tumor was right frontal 2 cm x 3 cm.
Dellus said:I encourage the posters on this forum topic to research stereostatic radiosurgury and/or Gamma knife treatment for tumors. Once you fell you understand enough to discuss it with your neurosurgeon - do so. They may not propose this option if the equipment is not available in your locale. Look at this option even if you have to travel to get it. It worked great for me and was noninvasive and I had no side effects. These methods use focused radiation beams to induce a high dose to the tumor cells to kill or disrupt their ability to divide while sparing the normal tissue by making sure it receives a lower dose. Accuracy and procedure planning is critical. The method is good for treating small tumors and those that are deep and inoperable.
Mark Sipe said:Hi Beth and everyone :)
My name is Mark (30). I live near Windsor in the UK. I was recently referred to a neurologist by my GP following exercise induced migraines, dizziness, numbness with poor reflexes down the left hand side and rapid weight loss. This was on top of erratic blood pressure and an irregular heartbeat which I was under a cardiologist for.
Following my consultation with the neurologist I was sent for an MRI last week. The results came back this week and it shows a tumor, which the neurologist believes to be benign, on the brain stem. I am due to go to a neuro surgeon on Monday to discuss what can be done but I did ask the neurologist how big the growth was. He declared it to be the size of a large walnut, which he went on to say was "not that big" and "try not to worry" - yeah right!
So I am now sitting here wondering what would constitute a large tumor. OK, in isolation a large walnut is not that big. But in my head - which is not the biggest head in the world, even if it has been described as vacuous by loved ones in the past, surely isn't small. I guess I will know more Monday but if any of you could share some insight into what size a tumor needs to get to be considered large, I would be most appreciated.
Will let you all know how I get on and look forward to speaking to you all over the coming months.
Mark
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Permalink Reply by Lisa Morgan on
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Hello! My name is Lisa Morgan. I had a craniotomy for a hemangioblastoma last August. It was also in my cerebellum. It was 13 mm and was removed entirely. I am doing well and you will too! I still have chronic daily headaches and don't feel like the person I did before surgery. Maybe I never will. Have been back to work since October. I don't have the stamina or the balance that I once did. I have to daily remind myself of how fortunate I really am. I survived a brain tumor! Right? The psychological struggles are much more than I ever realized. I have received several follow up mri's since and all looks good. There is a spot that they will continue to watch but I don't have to go back to my neurosurgeon for 1 year. That is awesome! I have been looking at my life day to day since surgery (or really since my diagnosis). To think that I can't look out a whole year now is so exciting. That almost sounds negative but I guess when you go through such a traumatic thing and your life changes instantly, that is a natural way to think. I wish you the best. I am 48 years old. I have 4 children - 2 natural and 2 step children. I am so blessed. I look forward to having grandchildren in the future. For you to be looking at having children is such an exciting thing! Live life to the fullest! Not one of God's children knows how long their life on this Earth will be. God Bless!
Anna-Stina Takala said:I'm 37 and I live in Sweden (the Northern part of Europe). I was diagnosed with Cerebellum Hemangioblastoma and had surgery in April last year. Sweden is a small country (9 million inhabitants), and only 5-10 Swedes get the Hemangioblastoma diagnosis every year. Through my blog and in hospital I have been able to get in contact with a handful of those persons. But as a patient you always search for more information and want to learn from others who's had similar experiences. I hope you all have patience with my incorrect English writing.... :)
Getting the diagnosis was a great chock (obviously). I had emergency surgery as the tumor had grown to a life threatening size and location. The operation was curative, and I was explained "cured" when I woke up. But my year have been all about coming to terms with what happened to me, and I feel so lucky that I survived. My perception of life have changed. I feel blessed, but at the same time scared and wierd. And I have been afraid of recessions.
After my first MRI after the surgery (in June this year) that showed I have nothing to fear in my brain, I feel that I want to - and is able to - lead a normal life, as the next person. Me and my fiance want to have kids, for one thing. Can my life continue now - after one year of "pause mode"?
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Permalink Reply by Victoria Bridge on -
I am a survivor. This all happened so fast that my head is still spinning. I was in travel status on May 14 and got sick with food poisoning. Since my blood pressure runs so low I passed out while i was being sick in the hotel bathroom. When i woke up and saw the puddle of blood I knew I needed help (something I don't normally ask for under any condition). I called my supervisor and he and his supervisors showed up at my room and said I had to go to the hospital since I lost consciousnous (sp). The ambulance was called and arrived within 5 minutes. They strapped me to a gurney and said hospital is the right choice. They loaded me in ambulance and the driver must have been an idiot as he was in a huge hurry. He jumped a curb and made a hard u turn so i looked at the emt in the back with me and asked for a puke bag. She handed me one and since you cant lie flat on your back and puke i got up on my right elbow and leaned over the side to be ill. now why the emt permitted this i have no idea but i did get sick and again passed out with my mouth crashing down on ambulance railing and cracking all my front teeth. I get to hospital and they do a CT scan of my head to make sure I didn't harm myself when i passed out and hit my head. The ER doc came in and said you didn't hurt yourself But you have a tumor on your pituitary gland that is about the size of a plum. I couldn't think clear other than i want to go home. The next morning i flew home and my daughter picked me up and took me straight to a ER here. They admitted me and now more than a month later I am home with 90 percent of the tumor removed and looking at 5 radiation treatments in the next week or so. The vision in my right eye is blurry and the right optic nerve had to be peeled off the tumor. Left one was just pushed aside and at least my carotids weren't involved. I sit here and realize that I have lost a month and am not sure of all that happened. My daughter is keeping me sane and i'm glad she lives with me though I hate being a burden to her. So how long before things get normal again?? How long before they let me drive again?? When is it all real??
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Permalink Reply by M Robbins on
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Hello Everyone:
My name is Michelle and I was just diagnosed with a tumor on the pituitary gland on June 20, 2012. The PA said I had a glioma, but the endocrinologist also said that I have something called Partial Empty Cella syndrome. He didn't mention a glioma, so I am a little confused.
The way I was diagnosed goes as follows: Around May 14, I was getting help with chronic sinusitis. I had a tight feeling in my head, as well as inflamed sinuses, sinus headaches and ear drainage. Nothing they did seemed to help. The doctor ordered an x-ray, which didn't show anything.
Fast forward to June 14, 2012. I got a severe case of vertigo. Another doctor had put me on meclizine, which helped for a while but I thought gave me another headache, so I didn't take another dose on Sunday. Well on Monday, the 18th the vertigo was so bad that my Mom called 911 and I was rushed to the ER. The ER doctor came in and told me that my CT Scan looked normal and that I could go home. I then told him "I haven't felt normal since before 05/14/2012. I have had a tightness in my head, chronic sinusitis, ear problems, etc. and no one has been able to give me a straight answer as to what is going on". He then told me that I could be observed overnight. The endo told me the next day that he saw something abnormal and that I should get an MRI (which I did).
Feeling pretty mad at the ER doc and the radiologist, I made a comment to the MRI tech. This is what she told me what might have happened: "The ER people most often look for trauma type things, such as a blow to the head, so they can sometimes miss the "small" things like a little tumor. They shouldn't, but they sometimes do."
The endo also said that I have a small tumor and that the tumor doesn't grow very fast, but can present a lot of problems when it gets bigger. He also found that my thyroid levels were way off. He increased the dosage from 175 mcg to 200 mcgs.So far, I have appointments with four doctors this month: The ENT (I have had ear problems since I was 6 years old. I have also had sinus problems recently, plus the ENT had to put in a tube that had fallen out of my left ear -- something that has happened to me before).
I also have appointments with the endo, a neurologist and the opthalmologist (my vision seems fine right now).What also happened was that my mother was put in the same hospital on the same week (but different days). It turns out that she also had a severe case of vertigo, but her CT Scan came out normal. It turns out that she has had to get her ear crystals realigned.
So I am processing a lot of emotions right now. Things seemed to be going well for me (I am learning guitar and was approached by the music minister of my church to play guitar. This will be such a huge step for me. Also, I was asked to coordinate the breakfasts/coffee hours at church).
However, the things that concern me are the fatigue and possibly losing more of my hearing (although that may not be related to the tumor) and possibly losing my sight.
The one thing that I consider to be good about this is that it finally now answers a lot of questions that I have been having for a long time. It seems that I had a lot of the symptoms (migraines, sinus problems, etc) that no one was able to connect and now the dots have been connected. I also consider this to be a blessing, although I just wish that people would understand what I am going through.
Michelle
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Permalink Reply by Kasi Klimstra on
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I am also extremely angry about my husband's CT scan. Not only was his tumor missed by the ER docs (which I get, they were looking for bleeding) but also by an internist and the NEUROLOGIST. I was livid. Thank goodness an MRI was ordered so that it was caught.
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Permalink Reply by M Robbins on
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Well, Kasi, I feel your pain. What I have been telling people since this time is that you have to be your own best advocate! If I hadn't insisted that I be evaluated, I would have gone home not knowing about the tumor.
Michelle
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Permalink Reply by Kasi Klimstra on
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LOL, I just said those same exact words on another site!
M Robbins said:Well, Kasi, I feel your pain. What I have been telling people since this time is that you have to be your own best advocate! If I hadn't insisted that I be evaluated, I would have gone home not knowing about the tumor.
Michelle
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