Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 When my son went in for his last surgery for removal of an AN, we were told there was a risk of stroke and sure enough, that's what happened. And the results were deadly. It is such a freightening thing. And the recovery can be so difficult. But there are many people who do recover - depending on how bad the stroke is. Everytime I see a post that one of you is going in for surgery, I say a prayer for you. My son didn't make it but most of you will. Just don't give up. Bev in N.Y. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Jimmy, I guess they need something to tell if you are still alive! But really, fluctuations must show something. The point is I really don't know! I am not a doctor and none of us are. I think I can say this though: 1) strokes are a significant risk for us with NF2 (many of us had one), 2) we don't fully understand them, and, 3) the outcome of a stroke is major. Perhaps in the NF2 Review, we can ask a doctor to provide more info on strokes such as, the risks in NF2 type operations, what can be done to guard against strokes, etc. Perhaps we can send the question to and he can get someone to reply. I can draft up the question (unless someone else wants to) and post it later for comments. Does this sound like a good idea? >Well why do they monitor your bp if they just keep on going when they >see a fluctuation.,and how long does the fluctuation show. > Jimmy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Marie, I think things are more complex than what I have said. But it's a start. What we really need is a doctor to discuss strokes in relation to NF2. When I had my stroke in '86, the doctor never even told me it happened! I thought all the problems I was having were due to brain stem damage. I found out about 6 months after the operation for some therapists. I wanted to asked the doctor why he was such a wimp and did not tell me. But I had a great deal of respect for this doctor (and still do). I never did ask so perhaps we are both wimps? > > >THANK YOU FRANK!! and wife! Now things make sense! I had no idea docs did not know >when you have had a stroke! I guess that throws a whole different light on things; >I think Rick does have a point tho, in that I think some one should have spent some >time with he and /or his wife, explaining what happened, why, etc. Maybe then Rick >would not have been as bitter as he is, and I certainly understand his feelings. >Marie > > A. Fusca wrote: > >> From: ffusca@... ( A. Fusca) >> >> Rick and Crew, >> >> I think the problem we have is that NF2 is complex and we do not have >> medical degrees. No matter how much we talk to the doctors and read medical >> papers, we will never have the experience a doctor has. By the same token, >> the doctor will never know what it is like to live with NF2. >> >> The question that got me wondering was " if the doctor knows you are having a >> stroke, why proceed with the ABI " . Nobody can really answer this except for >> the doctor. It does not make sense to me to risk someone life for an ABI >> (even if the ABI were perfect and could make you hear). My wife is an >> operating room nurse and I asked her this question. Her reply was that when >> the patient is having a stroke, the doctors DO NOT know. They may see a >> fluctuation in the blood pressure or pulse but there is no way to tell if it >> is a stroke. It is only AFTER the patient wakes up and the doctors see the >> paralysis that they know it was a stroke. >> >> This may not be 100% accurate but it does explain why the doctors proceeded >> with Rick's ABI. Perhaps the only way to know why they proceeded with the >> ABI is to ask the doctor. Here in Canada, the doctors tend to tell you a lot >> (if you happen to know what to ask) before the operation but a lot less >> after the operation. I suspect it's a similar situation down there (perhaps >> more open) but I think this is the best way of finding out what really happened. >> >> >> >> > >> > >> >I don't know when the stroke occurred. In fact there is little more that >> >I do know, sorry. I will write Mr. . >> > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 1999 Report Share Posted June 27, 1999 It sounds like an EXCELLENT idea! In looking at this, when I recently had big problems because my tumor had my brain stem distended, I am wondering if I was a walking stroke potential?? But NO ONE mentioned that fact! So once again, I think if that is the case, we NF2 folks need to know so we know what questions to ask; we need to know, if our brain stem is distended, stroke risk increases by X percent, etc?? This is a subject that has not been discussed. I wonder if there are any statistics available on the number of AN patients that have had a stroke?? Marie A. Fusca wrote: > From: ffusca@... ( A. Fusca) > > Jimmy, > > I guess they need something to tell if you are still alive! But really, > fluctuations must show something. The point is I really don't know! I am not > a doctor and none of us are. I think I can say this though: 1) strokes are a > significant risk for us with NF2 (many of us had one), 2) we don't fully > understand them, and, 3) the outcome of a stroke is major. Perhaps in the > NF2 Review, we can ask a doctor to provide more info on strokes such as, the > risks in NF2 type operations, what can be done to guard against strokes, etc. > > Perhaps we can send the question to and he can get someone to reply. I > can draft up the question (unless someone else wants to) and post it later > for comments. Does this sound like a good idea? > > > > >Well why do they monitor your bp if they just keep on going when they > >see a fluctuation.,and how long does the fluctuation show. > > Jimmy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 1999 Report Share Posted June 27, 1999 I think that is another question to be addressed: why are patients not immediately informed when they have had a stroke?? Marie A. Fusca wrote: > From: ffusca@... ( A. Fusca) > > Marie, > > I think things are more complex than what I have said. But it's a start. > What we really need is a doctor to discuss strokes in relation to NF2. > > When I had my stroke in '86, the doctor never even told me it happened! I > thought all the problems I was having were due to brain stem damage. I found > out about 6 months after the operation for some therapists. I wanted to > asked the doctor why he was such a wimp and did not tell me. But I had a > great deal of respect for this doctor (and still do). I never did ask so > perhaps we are both wimps? > > > > > > > > >THANK YOU FRANK!! and wife! Now things make sense! I had no idea docs did > not know > >when you have had a stroke! I guess that throws a whole different light on > things; > >I think Rick does have a point tho, in that I think some one should have > spent some > >time with he and /or his wife, explaining what happened, why, etc. Maybe > then Rick > >would not have been as bitter as he is, and I certainly understand his > feelings. > >Marie > > > > A. Fusca wrote: > > > >> From: ffusca@... ( A. Fusca) > >> > >> Rick and Crew, > >> > >> I think the problem we have is that NF2 is complex and we do not have > >> medical degrees. No matter how much we talk to the doctors and read medical > >> papers, we will never have the experience a doctor has. By the same token, > >> the doctor will never know what it is like to live with NF2. > >> > >> The question that got me wondering was " if the doctor knows you are having a > >> stroke, why proceed with the ABI " . Nobody can really answer this except for > >> the doctor. It does not make sense to me to risk someone life for an ABI > >> (even if the ABI were perfect and could make you hear). My wife is an > >> operating room nurse and I asked her this question. Her reply was that when > >> the patient is having a stroke, the doctors DO NOT know. They may see a > >> fluctuation in the blood pressure or pulse but there is no way to tell if it > >> is a stroke. It is only AFTER the patient wakes up and the doctors see the > >> paralysis that they know it was a stroke. > >> > >> This may not be 100% accurate but it does explain why the doctors proceeded > >> with Rick's ABI. Perhaps the only way to know why they proceeded with the > >> ABI is to ask the doctor. Here in Canada, the doctors tend to tell you a lot > >> (if you happen to know what to ask) before the operation but a lot less > >> after the operation. I suspect it's a similar situation down there (perhaps > >> more open) but I think this is the best way of finding out what really > happened. > >> > >> > >> > >> > > >> > > >> >I don't know when the stroke occurred. In fact there is little more that > >> >I do know, sorry. I will write Mr. . > >> > > >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 1999 Report Share Posted June 28, 1999 Dear Bev, its frightening to hear of your loss. Yes, I too had a significant stroke, and the repercussions are severe. The loss though would be more devastating and at such a young age would be more so. I'm sure everyone is saddened for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 1999 Report Share Posted July 8, 1999 , You have made some good points. I have 2 comments: 1) My understanding is that bleeding in the brain is a hemorrhage. A stroke is caused by a blood clot which restricts blood flow to the brain. 2) I don't think a doctors error is necessarily the cause of the stroke. There are too many underlining factors - some which can be controlled and some that can't. In any case, this is why I think getting a doctors view on strokes is important. >My two penny worth on this subject. > >From what I understand a Stroke is caused by a bleed into the brain, this rush of blood which should not be there harms small " nerves " in the brain, which may/may not recover. > >Our tumours are blood filled, and if you have (like me) raised blood pressure, the danger of the tumour bleeding when being cut out is there, also as out tumours are all so different in so many ways, a surgeon does not know exactly what he is going to find until he reaches the site. > >We asked if our daughter could have a debulking operation on one of her tumours, the surgeon said no, as he was so worried about a bleed into her brain. > >Why don't they tell you? I feel it's beyond some of the Gods of the medical profession to confess to making a error, plus you guys would be asking your lawyer about a lawsuit. > >Thoughts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 1999 Report Share Posted July 8, 1999 In a message dated 7/8/99 7:35:21 PM Eastern Daylight Time, mcdrew@... writes: << Now I was just talking to Harold and he said a stroke was when the brain did not get oxygen! You are right, we definitely need a doc to straighten us out, and I agree that most often it is not a doctor's fault when we have a stroke. Marie A. Fusca wrote: > From: ffusca@... ( A. Fusca) > > , > > You have made some good points. I have 2 comments: > > 1) My understanding is that bleeding in the brain is a hemorrhage. A stroke > is caused by a blood clot which restricts blood flow to the brain. >> You are Both Right.. The Blood s Oxygen to your cells (all over your body) When you interupt the blood flow, it interrupts the Oygenation of the Cells the blood can't get to, And then they die.. Or at least have massive Hissy Fits There's Generally 2 types of strokes. A Hemorrhage.. Basically when your blood vessel has a blow out (kinda like a radiator hose exploding) And the blood leaks out all over your brain. Or you get a clot, or blockage of the artery. This can interupt blood flow.. And in some cases can cause the blow out when pressure builds up. Pete Before I was Inspector gadget.. I was an EMT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 1999 Report Share Posted July 8, 1999 Now I was just talking to Harold and he said a stroke was when the brain did not get oxygen! You are right, we definitely need a doc to straighten us out, and I agree that most often it is not a doctor's fault when we have a stroke. Marie A. Fusca wrote: > From: ffusca@... ( A. Fusca) > > , > > You have made some good points. I have 2 comments: > > 1) My understanding is that bleeding in the brain is a hemorrhage. A stroke > is caused by a blood clot which restricts blood flow to the brain. > > 2) I don't think a doctors error is necessarily the cause of the stroke. > There are too many underlining factors - some which can be controlled and > some that can't. > > In any case, this is why I think getting a doctors view on strokes is important. > > > > >My two penny worth on this subject. > > > >From what I understand a Stroke is caused by a bleed into the brain, this > rush of blood which should not be there harms small " nerves " in the brain, > which may/may not recover. > > > >Our tumours are blood filled, and if you have (like me) raised blood > pressure, the danger of the tumour bleeding when being cut out is there, > also as out tumours are all so different in so many ways, a surgeon does > not know exactly what he is going to find until he reaches the site. > > > >We asked if our daughter could have a debulking operation on one of her > tumours, the surgeon said no, as he was so worried about a bleed into her > brain. > > > >Why don't they tell you? I feel it's beyond some of the Gods of the > medical profession to confess to making a error, plus you guys would be > asking your lawyer about a lawsuit. > > > >Thoughts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 1999 Report Share Posted July 8, 1999 Glad you added that last comment! And I bet you were a darn good EMT! Marie PeteEMT@... wrote: > From: PeteEMT@... > > In a message dated 7/8/99 7:35:21 PM Eastern Daylight Time, mcdrew@... > writes: > > << > Now I was just talking to Harold and he said a stroke was when the brain did > not get > oxygen! You are right, we definitely need a doc to straighten us out, and I > agree > that most often it is not a doctor's fault when we have a stroke. > Marie > > A. Fusca wrote: > > > From: ffusca@... ( A. Fusca) > > > > , > > > > You have made some good points. I have 2 comments: > > > > 1) My understanding is that bleeding in the brain is a hemorrhage. A stroke > > is caused by a blood clot which restricts blood flow to the brain. >> > > You are Both Right.. The Blood s Oxygen to your cells (all over your > body) When you interupt the blood flow, it interrupts the Oygenation of the > Cells the blood can't get to, And then they die.. Or at least have massive > Hissy Fits > > There's Generally 2 types of strokes. A Hemorrhage.. Basically when your > blood vessel has a blow out (kinda like a radiator hose exploding) And the > blood leaks out all over your brain. > > Or you get a clot, or blockage of the artery. This can interupt blood flow.. > And in some cases can cause the blow out when pressure builds up. > > Pete > Before I was Inspector gadget.. I was an EMT Quote Link to comment Share on other sites More sharing options...
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