Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 I guess the radiation I had a year before the surgery played a role... as I had Epstein too and my results were not as good. Kev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 Adam has an intramedullary ependymoma that's EXACTLY what I have. Actually, this is a regrowth. A few year ago (4?) we had surgery to remove this, yes was VERY slow growing but at that point needed to come out. Anyone remeber, my mom refferred to it as a "pickle"? Anyhow, they were only able to remove 80%, and now it has regrown to bigger than was before. All I am hearing is "very risky" and I am none the less, freaked out. I need to get through the "easy" surgery this Tuesday and then begin planning for the ependymoma surgery. Isn't this fun!? -Caren... who headed to coast of Deleware and beaches for the weekend with my sister, brother in law and 2 nephews, my mom lives in Deleware. Then back to Buffalo monday, bringing mom back with us. and surgery Tuesday morning at 11am (they changed times YUCK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 Barbara do you know of Dr Moosey in Pittsburgh he is to do surgery on Mike the 29th I write to see if the crew knew of this dr But I did not even see my message go through is every thing working ok? Lois Ependymoma > Adam has an intramedullary ependymoma. We were told they are slow growing, > if at all. That appears to be the case for him. But he now has a cyst which > is filling with fluid on a portion of this that ultimately may cause the same > problems. > > Dr. Epstein was the king of surgeons in removing this tumor. Now I'm not > sure who else is in his league. I've heard that Black, who I think > used to be with UCLA and now Cedar Sinai is a very successful surgeon -- but > Epstein was getting a great deal of NF2 patients, thus practice with our > unique, sticky tumors. > > Anyone knows who assisted under him -- either at NYU or Beth Israel? > > Barbara lin > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 I've read about Black also. But like you, wonder how much experience he has with NF2 tumors. Wonder if you contacted Epsteins office, if they would have any information/suggestions? Marie Ependymoma > Adam has an intramedullary ependymoma. We were told they are slow growing, > if at all. That appears to be the case for him. But he now has a cyst which > is filling with fluid on a portion of this that ultimately may cause the same > problems. > > Dr. Epstein was the king of surgeons in removing this tumor. Now I'm not > sure who else is in his league. I've heard that Black, who I think > used to be with UCLA and now Cedar Sinai is a very successful surgeon -- but > Epstein was getting a great deal of NF2 patients, thus practice with our > unique, sticky tumors. > > Anyone knows who assisted under him -- either at NYU or Beth Israel? > > Barbara lin > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 Barbara... I had a cyst above the c-1 also removed at the time. I cannot believe how comfortable I felt with Dr. Epstein at the helm with that surgery. My mother was a nervous wreck! He was amazingly approachable for a doctor with that much attention brought to him. The tumor and the cyst are now back, big as ever, but that belongs in the thread: " Does surgery create faster tumor regrowth? " You're right, they are slow growing bc I had contacted Epstein maybe 3 or 4 years prior when it first was noticed on my mri's. He said " wait bc it will grow slow " , and so I waited. The frightening thing with waiting is that it seeded and now I have tumors on and in every nook and cranny on my spine. It's a very very scary game we play... watch, wait, take a risk,.and hope! ----- Original Message ----- Adam has an intramedullary ependymoma. We were told they are slow growing, if at all. That appears to be the case for him. But he now has a cyst which is filling with fluid on a portion of this that ultimately may cause the same problems. Dr. Epstein was the king of surgeons in removing this tumor. Now I'm not sure who else is in his league. I've heard that Black, who I think used to be with UCLA and now Cedar Sinai is a very successful surgeon -- but Epstein was getting a great deal of NF2 patients, thus practice with our unique, sticky tumors. Anyone knows who assisted under him -- either at NYU or Beth Israel? Barbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 Jennette, I assume from this you are saying it seeded PRIOR to surgery, so not a result of surgery, but a result of leaving it alone??? I am getting very curious on this one. In recent data, they are describing nf2 as not only a tumor suppressor gene, but a tumor metastasing gene..have taken this to explain why nf2 tumros are more invasive/aggressive/ atypical, because of how they degrade the ECM etc. But I am beginning to wonder. Have they proven that nf2 tumors do not " metastasise', even though they are 'benign " . I.e.. they seed, with or without surgery? Barbara... I had a cyst above the c-1 also removed at the time. ght to him. The > tumor and the cyst are now back, big as ever, but that belongs in the > thread: " Does surgery create faster tumor regrowth? " > > You're right, they are slow growing bc I had contacted Epstein maybe 3 > or 4 years prior when it first was noticed on my mri's. He said " wait bc > it will grow slow " , and so I waited. The frightening thing with > waiting is that it seeded and now I have tumors on and in every nook and > cranny on my spine. It's a very very scary game we play... watch, wait, > take a risk,.and hope! > > ----- Original Message ----- > > > Adam has an intramedullary ependymoma. We were told they are slow > growing, > if at all. That appears to be the case for him. But he now has a cyst > which > is filling with fluid on a portion of this that ultimately may cause the > same > problems. > > Dr. Epstein was the king of surgeons in removing this tumor. Now I'm > not > sure who else is in his league. I've heard that Black, who I > think > used to be with UCLA and now Cedar Sinai is a very successful surgeon -- > but > Epstein was getting a great deal of NF2 patients, thus practice with our > unique, sticky tumors. > > Anyone knows who assisted under him -- either at NYU or Beth Israel? > > Barbara lin > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Barbara. what is Ependymoma? I've never heard of this. Good luck with your surgery Caren ! Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 caren, it was 2000 you had that removed, same year i think you had 2 meningiomas removed thanks dear, you are right. the brainstem 'pickle" was in January 2000, then came 2 (a few were removed but from both sides of my head) meningomia's (sp?) that was in December 2000, and January 2001 and I was lefy Fuzzy!. None of my tumors, except the Ependymoma have grown back, that was just in my Dr.'s report, I'll type up report after surgery, its kinda long -Caren (laughing, I got a stalker! j/k) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Well Caren, as much as you can, enjoy the beach and forget the surgery for now!! Marie Re: Ependymoma Adam has an intramedullary ependymomathat's EXACTLY what I have. Actually, this is a regrowth. A few year ago (4?) we had surgery to remove this, yes was VERY slow growing but at that point needed to come out. Anyone remeber, my mom refferred to it as a "pickle"? Anyhow, they were only able to remove 80%, and now it has regrown to bigger than was before. All I am hearing is "very risky" and I am none the less, freaked out. I need to get through the "easy" surgery this Tuesday and then begin planning for the ependymoma surgery. Isn't this fun!?-Caren... who headed to coast of Deleware and beaches for the weekend with my sister, brother in law and 2 nephews, my mom lives in Deleware. Then back to Buffalo monday, bringing mom back with us. and surgery Tuesday morning at 11am (they changed times YUCK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 I'll be thinking of you on Tuesday Caren (well, not to say that I never think of you). That didn't come out right, did it? How about...you are always in my thoughts? Sock it to 'em :-) -Caren... who headed to coast of Deleware and beaches for the weekend with my sister, brother in law and 2 nephews, my mom lives in Deleware. Then back to Buffalo monday, bringing mom back with us. and surgery Tuesday morning at 11am (they changed times YUCK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 caren, it was 2000 you had that removed, same year i think you had 2 meningiomas removed. no i'm not stalking you, but your surgeries mimicked mine at the same time and i followed you very closely. I remember how your mom said your tumor came out like a pickle, was very relieved. was not aware only 80% removed. I had one out (ependymoma) in march 2000, did well but am scared of that mother resurrecting! Damn it why do these things recur. they taunt us, dare us to try to get rid of them. grrrrr, maybe surgery does beget surgery. hang in there girl, your dr is the best. i am due for mri's will ask about mine now, im sure theres scar tissue but i wonder if ANY tumor there, they really cant tell much til open you up. cindy In NF2_Crew@y..., " Marie Drew " <mcdrew@n...> wrote: > Well Caren, as much as you can, enjoy the beach and forget the surgery for now!! Marie > Re: Ependymoma > > > In a message dated 8/7/2002 8:42:56 PM Eastern Daylight Time, bfrank4fr@a... writes: > > > > Adam has an intramedullary ependymoma > > > that's EXACTLY what I have. Actually, this is a regrowth. A few year ago (4?) we had surgery to remove this, yes was VERY slow growing but at that point needed to come out. Anyone remeber, my mom refferred to it as a " pickle " ? Anyhow, they were only able to remove 80%, and now it has regrown to bigger than was before. All I am hearing is " very risky " and I am none the less, freaked out. I need to get through the " easy " surgery this Tuesday and then begin planning for the ependymoma surgery. Isn't this fun!? > > -Caren... who headed to coast of Deleware and beaches for the weekend with my sister, brother in law and 2 nephews, my mom lives in Deleware. Then back to Buffalo monday, bringing mom back with us. and surgery Tuesday morning at 11am (they changed times YUCK) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 My surgery was in 1989. They removes a tumour that encased my brain stem. The tumour was mostly removed and it was necessary to go into my spinal cord as far down as the middle of my shoulder blades to remove this tumour. Since then the tumours have come back in my spinal cord but luckly are individual ones per each vertabrae. The tumours at the end of the spinal cord have returned but do not encase the brain stem area. I have lost feeling in my neck and control of my right foot because of the surgery. The surgery was 9 and half hours long. The pain is now 24/7 but we all know that. The problem was that the surgery was necessary and probably will be again but it is important to be informed. I was lucky in that my life was not bad until I was in my late '30's. Since then things have gone down hill but I try to fight depression every day. I do not know about saving tumours for research. I think it depends on the hospital and what researchers are looking for. The primary fact, believe it or not, is cost. If the place the surgery is done is into research then it may be used but if it is not then what is the cost of getting that tumour to the research place. In my case the whole operation was filmed and that is used in teaching and research. Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 since I had/have an ependymoma I am researching, found this http://www.emedicine.com/radio/topic775.htm I still dont understand the cancer label, all these tumors we get are called cancer on web sites but i dont have cancer, or do I? In NF2_Crew@y..., CarenAnn1977@a... wrote: > In a message dated 8/8/2002 10:15:52 AM Eastern Daylight Time, > cinnyd@t... writes: > > > > caren, it was 2000 you had that removed, same year i think you had > > 2 meningiomas removed > > thanks dear, you are right. the brainstem 'pickle " was in January 2000, then > came 2 (a few were removed but from both sides of my head) meningomia's (sp?) > that was in December 2000, and January 2001 and I was lefy Fuzzy!. None of my > tumors, except the Ependymoma have grown back, that was just in my Dr.'s > report, I'll type up report after surgery, its kinda long > > -Caren (laughing, I got a stalker! j/k) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 i have always said nf2 is cancer of the nerves kev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Rosemary I find this a little scary. My Ependymoma showed it had been bleeding for some time, prior to surgery. Does that mean that it may have seeded. The day after surgery, I had to have an MRI (what fun) and if there was any left, I was going to be taken back into theatre or Ray treatment discussed with me. Over the last couple of months, my neck & high up at the back of my head is aching non stop, I'm hoping against hope, that it's just pain from the damaged surgery site. My last MRI, last November showed NO tumours in this area. Because there was only marginal growth in my AN and Meningioma and the Lumbar + Full Spine MRI's need doing, the Prof said that the Head could wait until the following year. I'm now thinking that's not such a good idea. I dread having MRI's so was elated with what he said at the time. I'd better phone his Secretary and make sure she orders the Head as well. YUK!!!!!! Dumb question: ECM ???? ine Re: Ependymoma > Jennette, I assume from this you are saying it seeded PRIOR to surgery, so > not a result of surgery, but a result of leaving it alone??? , but a tumor metastasing gene..have > taken this to explain why nf2 tumros are more invasive/aggressive/ atypical, > because of how they degrade the ECM etc. But I am beginning to wonder. Have > they proven that nf2 tumors do not " metastasise', even though they are > 'benign " . I.e.. they seed, with or without surgery? > > Barbara The frightening thing with > > waiting is that it seeded and now I have tumors on and in every nook and > > cranny on my spine. It's a very very scary game we play... watch, wait, > > take a risk,.and hope! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Subject: Re: Ependymoma Hmmmmmm , did any of you have herniated disks following the fluid draining...did they do biopsy of the tumors at the time as well. My tumor took less then a year to return, and was more damaging, in spite of it receiving radiation very soon after the cyst was drained/biopsy (1ST) surgery. _______________ > Jennette, I assume from this you are saying it seeded PRIOR to surgery, so > not a result of surgery, but a result of leaving it alone??? > > I am getting very curious on this one. In recent data, they are describing > nf2 as not only a tumor suppressor gene, but a tumor metastasing gene..have > taken this to explain why nf2 tumros are more invasive/aggressive/ atypical, > because of how they degrade the ECM etc. But I am beginning to wonder. Have > they proven that nf2 tumors do not " metastasise', even though they are > 'benign " . I.e.. they seed, with or without surgery? > > Barbara... I had a cyst above the c-1 also removed at the time. ght to > him. The > > tumor and the cyst are now back, big as ever, but that belongs in the > > thread: " Does surgery create faster tumor regrowth? " > > > > You're right, they are slow growing bc I had contacted Epstein maybe 3 > > or 4 years prior when it first was noticed on my mri's. He said " wait bc > > it will grow slow " , and so I waited. The frightening thing with > > waiting is that it seeded and now I have tumors on and in every nook and > > cranny on my spine. It's a very very scary game we play... watch, wait, > > take a risk,.and hope! > > > > ----- Original Message ----- > > > > > > Adam has an intramedullary ependymoma. We were told they are slow > > growing, > > if at all. That appears to be the case for him. But he now has a cyst > > which > > is filling with fluid on a portion of this that ultimately may cause the > > same > > problems. > > > > Dr. Epstein was the king of surgeons in removing this tumor. Now I'm > > not > > sure who else is in his league. I've heard that Black, who I > > think > > used to be with UCLA and now Cedar Sinai is a very successful surgeon -- > > but > > Epstein was getting a great deal of NF2 patients, thus practice with our > > unique, sticky tumors. > > > > Anyone knows who assisted under him -- either at NYU or Beth Israel? > > > > Barbara lin > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Not a bad way of putting it, as far as I can see. > i have always said nf2 is cancer of the nerves > > kev > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Extracellular matrix. Don't know the answers about seeding, ine. think if you have a change in symptoms you should always get ti checked, or at least bring it to their attention. > Rosemary > I find this a little scary. My Ependymoma showed it had been bleeding for > some time, prior to surgery. Does that mean that it may have seeded. The day > after surgery, I had to have an MRI (what fun) and if there was any left, I > was going to be taken back into theatre or Ray treatment discussed with me. > Over the last couple of months, my neck & high up at the back of my head is > aching non stop, I'm hoping against hope, that it's just pain from the > damaged surgery site. My last MRI, last November showed NO tumours in this > area. > Because there was only marginal growth in my AN and Meningioma and the > Lumbar + Full Spine MRI's need doing, the Prof said that the Head could wait > until the following year. I'm now thinking that's not such a good idea. I > dread having MRI's so was elated with what he said at the time. > I'd better phone his Secretary and make sure she orders the Head as well. > YUK!!!!!! > Dumb question: ECM ???? > ine > > Re: Ependymoma > > >> Jennette, I assume from this you are saying it seeded PRIOR to surgery, so >> not a result of surgery, but a result of leaving it alone??? > > , but a tumor metastasing gene..have >> taken this to explain why nf2 tumros are more invasive/aggressive/ > atypical, >> because of how they degrade the ECM etc. But I am beginning to wonder. > Have >> they proven that nf2 tumors do not " metastasise', even though they are >> 'benign " . I.e.. they seed, with or without surgery? >> >> Barbara > The frightening thing with >>> waiting is that it seeded and now I have tumors on and in every nook and >>> cranny on my spine. It's a very very scary game we play... watch, wait, >>> take a risk,.and hope! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 Subject: Re: Re: Ependymoma hmmmm You could be rigtht in a sense Sheryn ________________ > i have always said nf2 is cancer of the nerves > > kev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2002 Report Share Posted August 10, 2002 Yes it's scary. When researching Ependymoma's before mine was removed, I read there was a high incidence of Ependymoma's regrowing within 10 years. Don't know if that was for those debulked or if it included complete removals as well. I for one am praying the stats are wrong. ine Re: Ependymoma > > > > > > In a message dated 8/7/2002 8:42:56 PM Eastern Daylight Time, > bfrank4fr@a... writes: > > > > > > > > Adam has an intramedullary ependymoma > > > > > > that's EXACTLY what I have. Actually, this is a regrowth. A few > year ago (4?) we had surgery to remove this, yes was VERY slow growing > but at that point needed to come out. Anyone remeber, my mom refferred > to it as a " pickle " ? Anyhow, they were only able to remove 80%, and > now it has regrown to bigger than was before. All I am hearing is > " very risky " and I am none the less, freaked out. I need to get > through the " easy " surgery this Tuesday and then begin planning for > the ependymoma surgery. Isn't this fun!? > > > > -Caren... who headed to coast of Deleware and beaches for the > weekend with my sister, brother in law and 2 nephews, my mom lives in > Deleware. Then back to Buffalo monday, bringing mom back with us. and > surgery Tuesday morning at 11am (they changed times YUCK) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2002 Report Share Posted August 10, 2002 Thanks for that link. It was very informative. I was especially pleased to see that it is quite common for Ependymoma's to haemorragae.... Actually explained a lot for me. ine Re: Ependymoma > since I had/have an ependymoma I am researching, found this > http://www.emedicine.com/radio/topic775.htm I still dont understand > the cancer label, all these tumors we get are called cancer on web > sites but i dont have cancer, or do I? > > > > > > > In NF2_Crew@y..., CarenAnn1977@a... wrote: > > In a message dated 8/8/2002 10:15:52 AM Eastern Daylight Time, > > cinnyd@t... writes: > > > > > > > caren, it was 2000 you had that removed, same year i think you > had > > > 2 meningiomas removed > > > > thanks dear, you are right. the brainstem 'pickle " was in January > 2000, then > > came 2 (a few were removed but from both sides of my head) > meningomia's (sp?) > > that was in December 2000, and January 2001 and I was lefy Fuzzy!. > None of my > > tumors, except the Ependymoma have grown back, that was just in my > Dr.'s > > report, I'll type up report after surgery, its kinda long > > > > -Caren (laughing, I got a stalker! j/k) > > > Quote Link to comment Share on other sites More sharing options...
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