Sorry I ask so many questions, both of my grandmothers had brain tumors on both sides of my family. The one who raised me has passed away and the other one does not speak english so she can’t explain to me what she had or her symptoms. I know she had a craniotomy at the age of 71. She also was in a car accident many years ago.
My biological mother just told me last year that my grandma also had surgery to remove tumors from her colon. Of course she doesn’t know what kind only that they were benign and large. Also a language barrier with biological mom. It is sooo strange. When I was younger everyone said your asian you’ll live to be 100. [not that I would want to]. I always felt invincible. I am not afraid of the pain, not afraid of the possibility of dying, not afraid of needles anymore lol. My surgery taught me that. I just need to make sure I stay on top of this. I have the greatest husband in the world, two beautiful step children, three awesome sisters the list could go on forever. I just need to make sure that no matter what happens I put them through the least pain and stress as possible. I feel like finding these things and battling with them early is the only way I can accomplish that. From what you all have shared with me I have gathered that I will most likely be watching and waiting for a while at least. After my surgery doc said that it would be 3 to 5 years before I would need another one. It has been just under two and I have vision loss. From everything I have read on your posts I have learned that the watching game can go on for many years with many increasing symptoms and vision loss. At least I know now how I think it will progress. I have decided today to watch and wait with a thankful heart. Thank you all you give me more hope than any doctor ever could. Your stories are truly appreciated
Elenor sorry I have been babbling on about my self this whole time. I do know that my grandmother went to johns hopkins in Ny york somewhere. She was 71 when she had her tumor removed. Not sure what kind of tumor she had but her complications from surgery were almost complete loss of vision in both eyes. She is celebrating her 90 th birthday this year and is still as spunky as ever. I went up and painted the inside of my families’ house last year and she gets around just fine. Always in to something, always giving hugs, and picking on us. With the little bit of vision she has left she still corrects my cleaning habits lol. She is a gem, a true spitfire, and a true example for all of us. From tge sounds of your post you are tge same. Thank you for sharing and please do not give up hope
Hi and Welcome. You and I are in a similar boat, one of my 5+ tumors is in my sphenoid wing,and in the bone and tumor and bone are pressing on my optic nerve and have been for at least 7+ years. I did have that one excised as much as possible and the rest radiated. I can see pretty good considering. I just did gamma knife on the tumor on the left side and I'm a fan of radiation versus surgery, although I've had 2. We are definitely strong warriors and a good sense of humor doesn't hurt as well:-) All my best to you. peg
I had all the genetic tests and it was determined mine was a mutation. I have no family history of any brain tumors, though my father got prostate cancer when elderly. Did you have lots of xrays when you had your accident?
Yes, we are!!!. Just finished 20 rounds of Photon therapy on Monday!. They shot a proton beam 60% of the speed light into where my tumor is grown. It was bad a$$.
Hi and Welcome. You and I are in a similar boat, one of my 5+ tumors is in my sphenoid wing,and in the bone and tumor and bone are pressing on my optic nerve and have been for at least 7+ years. I did have that one excised as much as possible and the rest radiated. I can see pretty good considering. I just did gamma knife on the tumor on the left side and I'm a fan of radiation versus surgery, although I've had 2. We are definitely strong warriors and a good sense of humor doesn't hurt as well:-) All my best to you. peg
No exrays just a huge bump and mild bruising on my forhead above my left eye. I used to joke about being hard headed because my head cracked the wind shield but my head was fine. Lol
Hi and Welcome. You and I are in a similar boat, one of my 5+ tumors is in my sphenoid wing,and in the bone and tumor and bone are pressing on my optic nerve and have been for at least 7+ years. I did have that one excised as much as possible and the rest radiated. I can see pretty good considering. I just did gamma knife on the tumor on the left side and I'm a fan of radiation versus surgery, although I've had 2. We are definitely strong warriors and a good sense of humor doesn't hurt as well:-) All my best to you. peg
Good Afternoon All, I hope its ok for me to add a post, as I am just interested in discussing and advice from others, thank you. My name is Fleur and I live in Kerikeri, Bay of Islands, NZ. There's no specialists here so I travel to Auckland to see my Neurosurgeon and for scans etc. I had surgery 4 years ago, then I had one tumor surgery went well, however 4 years later I have I think 6 now. In the last 2 years every time I have a scan they say more have turned up. I'm on watch and wait but I do have surgery planned long term for 2 of them. Just still watching for now, 1 is close to a vessel so just a matter of growing time. The others two are in too deep and ones somewhere behind the eye, but ok for now. Because I live in NZ we possibly aren't so up to date withthe latest trials, info etc, don't think we have any discussion groups, we are a small country etc, and I I'm not sure how many people get multiples this is no disrespect to my surgeon who is truely wonderful. So I am here for news, updates, friendship and anything that I can offer. Thank you everyone, wishing you all happy health and wellness, warmest regards Fleur
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Sorry I ask so many questions, both of my grandmothers had brain tumors on both sides of my family. The one who raised me has passed away and the other one does not speak english so she can’t explain to me what she had or her symptoms. I know she had a craniotomy at the age of 71. She also was in a car accident many years ago.
My biological mother just told me last year that my grandma also had surgery to remove tumors from her colon. Of course she doesn’t know what kind only that they were benign and large. Also a language barrier with biological mom. It is sooo strange. When I was younger everyone said your asian you’ll live to be 100. [not that I would want to]. I always felt invincible. I am not afraid of the pain, not afraid of the possibility of dying, not afraid of needles anymore lol. My surgery taught me that. I just need to make sure I stay on top of this. I have the greatest husband in the world, two beautiful step children, three awesome sisters the list could go on forever. I just need to make sure that no matter what happens I put them through the least pain and stress as possible. I feel like finding these things and battling with them early is the only way I can accomplish that. From what you all have shared with me I have gathered that I will most likely be watching and waiting for a while at least. After my surgery doc said that it would be 3 to 5 years before I would need another one. It has been just under two and I have vision loss. From everything I have read on your posts I have learned that the watching game can go on for many years with many increasing symptoms and vision loss. At least I know now how I think it will progress. I have decided today to watch and wait with a thankful heart. Thank you all you give me more hope than any doctor ever could. Your stories are truly appreciated
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2 ReactionsElenor sorry I have been babbling on about my self this whole time. I do know that my grandmother went to johns hopkins in Ny york somewhere. She was 71 when she had her tumor removed. Not sure what kind of tumor she had but her complications from surgery were almost complete loss of vision in both eyes. She is celebrating her 90 th birthday this year and is still as spunky as ever. I went up and painted the inside of my families’ house last year and she gets around just fine. Always in to something, always giving hugs, and picking on us. With the little bit of vision she has left she still corrects my cleaning habits lol. She is a gem, a true spitfire, and a true example for all of us. From tge sounds of your post you are tge same. Thank you for sharing and please do not give up hope
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3 ReactionsSorry I also spelled your name wrong
I had all the genetic tests and it was determined mine was a mutation. I have no family history of any brain tumors, though my father got prostate cancer when elderly. Did you have lots of xrays when you had your accident?
Yes, we are!!!. Just finished 20 rounds of Photon therapy on Monday!. They shot a proton beam 60% of the speed light into where my tumor is grown. It was bad a$$.
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4 ReactionsCongrats for being DONE and kicking a$$ !!!!
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2 ReactionsNo exrays just a huge bump and mild bruising on my forhead above my left eye. I used to joke about being hard headed because my head cracked the wind shield but my head was fine. Lol
Ha! Can tell you have a great sense of humor! That is a GOOD thing when you have to go through all these medical challenges 🙂
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1 ReactionGood Afternoon All, I hope its ok for me to add a post, as I am just interested in discussing and advice from others, thank you. My name is Fleur and I live in Kerikeri, Bay of Islands, NZ. There's no specialists here so I travel to Auckland to see my Neurosurgeon and for scans etc. I had surgery 4 years ago, then I had one tumor surgery went well, however 4 years later I have I think 6 now. In the last 2 years every time I have a scan they say more have turned up. I'm on watch and wait but I do have surgery planned long term for 2 of them. Just still watching for now, 1 is close to a vessel so just a matter of growing time. The others two are in too deep and ones somewhere behind the eye, but ok for now. Because I live in NZ we possibly aren't so up to date withthe latest trials, info etc, don't think we have any discussion groups, we are a small country etc, and I I'm not sure how many people get multiples this is no disrespect to my surgeon who is truely wonderful. So I am here for news, updates, friendship and anything that I can offer. Thank you everyone, wishing you all happy health and wellness, warmest regards Fleur
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