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SURGERY OR NO SURGERY ?Intraosseous Meningioma
After 4 yrs and 4 wrong diagnosis plus 3 major bi-opsies each one getting more invasive, i have finally been to see the top Nuero Surgeon in Nottingham, who advises me that it was probably a benign Intraosseous Meningnoma in the first place.It is sitting on my left temple and restricting the opening of my mouth so that i can't even pop a malteser or boiled sweet in fully, yawning is painful and the headaches and nosebleeds are quiet scary!!
I am left in a somewhat dilema because he has asked me to go away and think about if i really want such a BIG operation to remove this tumour he says it will take a team of surgeons to do the operation and compared to my biopsies it will be a massive operation.
He is willing to do it whenever i say so .BUT how do i make such a descion, he suggested i go away and relax and he will see me if not before, in 6 months. Your comments and experience will be more than appreciated.
I am a 63yr old fun loving active lady who is finding it very hard to RELAX !!
I am left in a somewhat dilema because he has asked me to go away and think about if i really want such a BIG operation to remove this tumour he says it will take a team of surgeons to do the operation and compared to my biopsies it will be a massive operation.
He is willing to do it whenever i say so .BUT how do i make such a descion, he suggested i go away and relax and he will see me if not before, in 6 months. Your comments and experience will be more than appreciated.
I am a 63yr old fun loving active lady who is finding it very hard to RELAX !!
I have been diagnosed with intraosseous meningioma , behind right eye. No symptoms other than its pushing my eye out...! But registrar says its "extensively infiltrated the bone" from skull base into my eye orbit/ socket. I will therefore need reconstruction with titanium for quite a lot of my orbital area??!! Anyone had any experience of this or similar? I know it's rare but would love to hear from anyone. I'm 42, and never had any health issues at all until now. So know I'm lucky! Am currently awaiting a date for surgery.
1 Comments
hi I have just been diagnosed with this also can I ask did you have surgery and if so how did it go were you in a lot of pain after you woke up from surgery I can't seem to find any information on this kind of meningioma from a personal experience
Sue, This is now 3 1/2 years since your post. How are you doing? What decision(s) did you make?
I also have an intraosseous meningioma diagnosed in April 2013. The tumor is behind my right eye and also connected to my cheek bone (the best I can understand it).
My condition began when I noticed diplopia (double vision) in early March after taking estrogen for 4 months. Since discontinuing the estrogen the strong head pressure is no longer present,. However, I still have the double vision.
Four weeks ago my ophthalmologist said my optic nerve is intact.
I am scheduled for another MRI in October which I'm "thinking" should be fine.
Again, I'm interested in an update from you.
I also have an intraosseous meningioma diagnosed in April 2013. The tumor is behind my right eye and also connected to my cheek bone (the best I can understand it).
My condition began when I noticed diplopia (double vision) in early March after taking estrogen for 4 months. Since discontinuing the estrogen the strong head pressure is no longer present,. However, I still have the double vision.
Four weeks ago my ophthalmologist said my optic nerve is intact.
I am scheduled for another MRI in October which I'm "thinking" should be fine.
Again, I'm interested in an update from you.
Many thanks for your comments which i have taken on board,hopefully i will be able to digest all this information you have directed my way. You are quiet right when you say the Surgeon didn't just flat out say that i didn't need the surgery, i think he was getting the point across that if i thought the Bi-opsy was invasive then i should be prepared that his will be a whole lot worse, and perhaps i should go away and think whether or not i want this benign tumour removed.
I turned to Medhelp quiet simply because i felt overwhelmed, and uncertain of which way to turn, l have to say i have been a descision maker all of my life and this one is a tough call.!! Maybe it's vanity OR ignorance that stops me from saying ok get the op done. I have listened to you and i am going in search of a second opinion, i did take a list of questions with me BUT they went by the way once he had put the ball in my court, my mind started working overtime, i had wanted to know if there was any danger of a stroke or seizure. I will let you know the outcome and once more thanks a million for your opinion
I turned to Medhelp quiet simply because i felt overwhelmed, and uncertain of which way to turn, l have to say i have been a descision maker all of my life and this one is a tough call.!! Maybe it's vanity OR ignorance that stops me from saying ok get the op done. I have listened to you and i am going in search of a second opinion, i did take a list of questions with me BUT they went by the way once he had put the ball in my court, my mind started working overtime, i had wanted to know if there was any danger of a stroke or seizure. I will let you know the outcome and once more thanks a million for your opinion
You do not have to tell your Nottingham physician that you're going to get a second opinion. That is your business and between you and the second doc, and you may ask the second doc to please keep your visit private, so as to respect the first doc. In addition, your second opinion does not necessarily mean you need a new diagnosis; rather all you need is information about whether you should have surgery with the current diagnosis and your individual set of circumstances. But you COULD re-visit your first doc, make a list of questions, and ask him for more info to help you come to a decision.
As for pathologists getting things wrong, when a pathologist looks at a slide of tissue cells, it might not look like the classic slide for a particular disorder, or it might be borderline, or might be what they're looking at is so rare that they cannot identify it, altho they know it's not exactly normal, and so sometimes a diagnosis is not so clear-cut to arrive at. At least in your case, which I believe it falls into the rare category, they finally figured it out, and since you've got an expert on the case who is familiar with your kind of growth, that you can finally move forward on what to do. You just need more information.
As for becoming deaf or blind, since your growth is benign, and since an expert has let you go home and think over what you want to do, there is apparently time on those issues, if they're issues at all. As you may have read in the website I gave you, on a patient who had a similar growth to yours but in a different location, there was visible evidence that the eye MIGHT be in danger. In your case, you haven't reported any evidence along those lines, other than the nose bleed, so absent any radiographic or visible or apparent problem with your eyes or ears, losing those senses probably do not pertain to you. But this is something you can ask your doc or the second opinion doc.
At least you ain't gonna up and die. It's benign. It can have complications if it gets too invasive, and the resulting surgery can be difficult on many levels. But that's the basic story. You just need more information, which hopefully the first doc would explain to you perhaps what HE would do and why, if he were in your shoes, and if he won't, get a second person on board with you, to help you decide what in the world to do. I mean, I'm assuming the doc didn't just flat out say, "You don't need the surgery." If he said that, well, after you get a second opinion that is in agreement, I think you can just proceed with your life as usual. I hope your meningioma doesn't hurt too much, and I hope everything will go well for you in general with this. GG
As for pathologists getting things wrong, when a pathologist looks at a slide of tissue cells, it might not look like the classic slide for a particular disorder, or it might be borderline, or might be what they're looking at is so rare that they cannot identify it, altho they know it's not exactly normal, and so sometimes a diagnosis is not so clear-cut to arrive at. At least in your case, which I believe it falls into the rare category, they finally figured it out, and since you've got an expert on the case who is familiar with your kind of growth, that you can finally move forward on what to do. You just need more information.
As for becoming deaf or blind, since your growth is benign, and since an expert has let you go home and think over what you want to do, there is apparently time on those issues, if they're issues at all. As you may have read in the website I gave you, on a patient who had a similar growth to yours but in a different location, there was visible evidence that the eye MIGHT be in danger. In your case, you haven't reported any evidence along those lines, other than the nose bleed, so absent any radiographic or visible or apparent problem with your eyes or ears, losing those senses probably do not pertain to you. But this is something you can ask your doc or the second opinion doc.
At least you ain't gonna up and die. It's benign. It can have complications if it gets too invasive, and the resulting surgery can be difficult on many levels. But that's the basic story. You just need more information, which hopefully the first doc would explain to you perhaps what HE would do and why, if he were in your shoes, and if he won't, get a second person on board with you, to help you decide what in the world to do. I mean, I'm assuming the doc didn't just flat out say, "You don't need the surgery." If he said that, well, after you get a second opinion that is in agreement, I think you can just proceed with your life as usual. I hope your meningioma doesn't hurt too much, and I hope everything will go well for you in general with this. GG
Many thanks for your comments, it's nice to know someone out there can relate to my symptoms, i thank you for the link which is now on my deskrop for easy access. I just hope my diagnosis is now correct i never knew pathologists could get things wrong !! and they have 4 times .Its gone from Fybros Dysplasia Pagets Disease, Intramuscular Lipoma Low grade Sarcoma and now Meningioma. Would it seem disrespectful to go for a second opinion? He said the nosebleeds and earaches have nothing to do with it. They have photgraphed my face on several occassions but sadly they keep reffering me to different specialist surgeons the last one being my 3rd Hospital and 5th Surgeon which dosen't really help. I agree with you about my eyesight,
well really all my senses are so important to me i just love life. I would hate to be deaf OR Blind
well really all my senses are so important to me i just love life. I would hate to be deaf OR Blind
Well, since you have symptoms like nosebleeds, then I think it would behoove you to seek a second opinion. Even tho your neuro is the top man in Nottingham, I do not like that he sort of put you in a position of making the decision without enough information or confidence to make it. So, even tho you've been thru the mill with this, since you now know what you've got, get a second opinion.
Yes, risk and all that jazz has to be taken into consideration, which the operation is indeed monumental, mainly because it can involve restructuring any bone removal you may need. But as I said at the outset, you present with symptoms, so it would be helpful to have someone additional in your corner to help you consider if (a) your symptoms are bad enough to warrant surgery, and (b) if the meningioma will ever bother an important structure like your eye, for example. And on that last issue, I think it would also be important to know just how fast-growing this thing is...they can follow you for a while and take new pictures and measure.
I hesitate to give you a link, where the first section of the website discusses your same growth, some people cannot manage surgery pictures, but you do not have to go to this link, or you do not have to look at the pictures, just read the first text-only part. So, just be forewarned. But a second opinion doc should be able to share pretty much everything that's in the first section of the website. But it's not fair that I not give you the link.
http://www.brain-surgery.us/meningioma.html
Yes, risk and all that jazz has to be taken into consideration, which the operation is indeed monumental, mainly because it can involve restructuring any bone removal you may need. But as I said at the outset, you present with symptoms, so it would be helpful to have someone additional in your corner to help you consider if (a) your symptoms are bad enough to warrant surgery, and (b) if the meningioma will ever bother an important structure like your eye, for example. And on that last issue, I think it would also be important to know just how fast-growing this thing is...they can follow you for a while and take new pictures and measure.
I hesitate to give you a link, where the first section of the website discusses your same growth, some people cannot manage surgery pictures, but you do not have to go to this link, or you do not have to look at the pictures, just read the first text-only part. So, just be forewarned. But a second opinion doc should be able to share pretty much everything that's in the first section of the website. But it's not fair that I not give you the link.
http://www.brain-surgery.us/meningioma.html
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