Re: treatment choices

[Guest guest]

I think it was Dr Mia MacCollin in a transcript I read that said something like " Don't be afraid to ask your doctor about what experience he or she has had with NF2 " and that if they are offended " They are tough and will learn to live with it , if they don't, go see someone else "

M

[Guest guest]

I have had a very painful experience with this one. I discussed, or tried to discuss, with a neurosurgeon what I'd been told by Dr Brackman. He inasmuch told me to sod off and then consult Dr Brackman instead.

The relationship between myself and this doctor is at a precarious balance since then, but I eventually did get him to understand where I was coming from. Lesson learnt was be aware of the lines of distinction between "patient domain" and "doctor domain". Be cautious of encroaching.

-----Original Message-----From: Marcus Sent: 06 December 2002 13:06To: NF2_Crew Subject: Re: treatment choices

I think it was Dr Mia MacCollin in a transcript I read that said something like " Don't be afraid to ask your doctor about what experience he or she has had with NF2 " and that if they are offended " They are tough and will learn to live with it , if they don't, go see someone else "

M

[Guest guest]

I have had a very painful experience with this one. I discussed, or tried to discuss, with a neurosurgeon what I'd been told by Dr Brackman. He inasmuch told me to sod off and then consult Dr Brackman instead.

The relationship between myself and this doctor is at a precarious balance since then, but I eventually did get him to understand where I was coming from. Lesson learnt was be aware of the lines of distinction between "patient domain" and "doctor domain". Be cautious of encroaching.

-----Original Message-----From: Marcus Sent: 06 December 2002 13:06To: NF2_Crew Subject: Re: treatment choices

I think it was Dr Mia MacCollin in a transcript I read that said something like " Don't be afraid to ask your doctor about what experience he or she has had with NF2 " and that if they are offended " They are tough and will learn to live with it , if they don't, go see someone else "

M

[Guest guest]

There's always a RIGHT and WRONG way to ask ANYONE anything. As much as I dislike stuck up people, you get nowhere by insulting them. Your mistake was to play one doctor against the other by quoting Dr Brackman.

If you are intending to ask a doctor a touchy question, ( like : do you know what you are doing ? ) write it down the day before and place yourself in the other persons shoes, read it and ask yourself if 'you' would be insulted . You could have said what you wanted to say but not mention the OTHER doctor,

Use a little T A C T

M

RE: treatment choices

I have had a very painful experience with this one. I discussed, or tried to discuss, with a neurosurgeon what I'd been told by Dr Brackman. He inasmuch told me to sod off and then consult Dr Brackman instead.

The relationship between myself and this doctor is at a precarious balance since then, but I eventually did get him to understand where I was coming from. Lesson learnt was be aware of the lines of distinction between "patient domain" and "doctor domain". Be cautious of encroaching.

-----Original Message-----From: Marcus Sent: 06 December 2002 13:06To: NF2_Crew Subject: Re: treatment choices

I think it was Dr Mia MacCollin in a transcript I read that said something like " Don't be afraid to ask your doctor about what experience he or she has had with NF2 " and that if they are offended " They are tough and will learn to live with it , if they don't, go see someone else "

M

[Guest guest]

There's always a RIGHT and WRONG way to ask ANYONE anything. As much as I dislike stuck up people, you get nowhere by insulting them. Your mistake was to play one doctor against the other by quoting Dr Brackman.

If you are intending to ask a doctor a touchy question, ( like : do you know what you are doing ? ) write it down the day before and place yourself in the other persons shoes, read it and ask yourself if 'you' would be insulted . You could have said what you wanted to say but not mention the OTHER doctor,

Use a little T A C T

M

RE: treatment choices

I have had a very painful experience with this one. I discussed, or tried to discuss, with a neurosurgeon what I'd been told by Dr Brackman. He inasmuch told me to sod off and then consult Dr Brackman instead.

The relationship between myself and this doctor is at a precarious balance since then, but I eventually did get him to understand where I was coming from. Lesson learnt was be aware of the lines of distinction between "patient domain" and "doctor domain". Be cautious of encroaching.

-----Original Message-----From: Marcus Sent: 06 December 2002 13:06To: NF2_Crew Subject: Re: treatment choices

I think it was Dr Mia MacCollin in a transcript I read that said something like " Don't be afraid to ask your doctor about what experience he or she has had with NF2 " and that if they are offended " They are tough and will learn to live with it , if they don't, go see someone else "

M

[Guest guest]

right and dont come off as accusing or negative. my dr has told me i'm

his only nf2 patient many times. of course he is a highly skilled surgeon,

he doresnt WANT to operate on me but does when we feel necessary. but point

is yes we have the rightto know their experience and they will freely give

it but dont come off like you are putting the down, just getting the facts,

and a smile even half 1 would not hurt ;-)

Marcus wrote:

I

think it was Dr Mia MacCollin in a transcript I read that said something

like " Don't be afraid to ask your doctor about what experience he or she

has had with NF2 " and that if they are offended " They are tough and will

learn to live with it , if they don't, go see someone else "

M

[Guest guest]

My son had a bad experince with a doc in saskatoon...We were told he had a golf ba;; sized tumor above his right eye...he told us it was pushing his right eye out but don't worry about it and come back in a year....I said dont tell me this...you should explain it better to ....I said this is happen ing to him not me....he looked at me and said why should i ...he's only 15 and a kid..... stood up and said BITE ME!!!!...we went home and called a specialist in Edmonton...2 weeks later was in having the tumor out...and we were told we got him in just in time...The damage was already starting....Here in Canada there arent any other options other than surgery....I am happy when some doc's tell us they dont know how to treat this and they try to find some one who know's a little about this....In some ways it's like living ing the dark ages here....Pam

RE: treatment choices

I have had a very painful experience with this one. I discussed, or tried to discuss, with a neurosurgeon what I'd been told by Dr Brackman. He inasmuch told me to sod off and then consult Dr Brackman instead.

The relationship between myself and this doctor is at a precarious balance since then, but I eventually did get him to understand where I was coming from. Lesson learnt was be aware of the lines of distinction between "patient domain" and "doctor domain". Be cautious of encroaching.

-----Original Message-----From: Marcus Sent: 06 December 2002 13:06To: NF2_Crew Subject: Re: treatment choices

I think it was Dr Mia MacCollin in a transcript I read that said something like " Don't be afraid to ask your doctor about what experience he or she has had with NF2 " and that if they are offended " They are tough and will learn to live with it , if they don't, go see someone else "

M

[Guest guest]

Thank you for that sound advice. Duly noted and written down.

-----Original Message-----From: Marcus Sent: 06 December 2002 13:36To: NF2_Crew Subject: Re: treatment choices

There's always a RIGHT and WRONG way to ask ANYONE anything. As much as I dislike stuck up people, you get nowhere by insulting them. Your mistake was to play one doctor against the other by quoting Dr Brackman.

If you are intending to ask a doctor a touchy question, ( like : do you know what you are doing ? ) write it down the day before and place yourself in the other persons shoes, read it and ask yourself if 'you' would be insulted . You could have said what you wanted to say but not mention the OTHER doctor,

Use a little T A C T

M

RE: treatment choices

I have had a very painful experience with this one. I discussed, or tried to discuss, with a neurosurgeon what I'd been told by Dr Brackman. He inasmuch told me to sod off and then consult Dr Brackman instead.

The relationship between myself and this doctor is at a precarious balance since then, but I eventually did get him to understand where I was coming from. Lesson learnt was be aware of the lines of distinction between "patient domain" and "doctor domain". Be cautious of encroaching.

-----Original Message-----From: Marcus Sent: 06 December 2002 13:06To: NF2_Crew Subject: Re: treatment choices

I think it was Dr Mia MacCollin in a transcript I read that said something like " Don't be afraid to ask your doctor about what experience he or she has had with NF2 " and that if they are offended " They are tough and will learn to live with it , if they don't, go see someone else "

M

[Guest guest]

Yes, most definitely we have to ask the doctor his/her experiences with NF2, but we have to keep in mind that the opinion may be biased.

In my case I had had AN surgery twice for same tumour. When it regrew the third time, my surgeon recommended FSR. In Canada, a linear accelerator is used to produce the beam that is not well focused.The treatment regime was to be 25 sessions over 5 weeks. We also had an Oncology consult. I was already very leery and wanted to know their results. They had done 19 patients and only 1 had a regrowth. I suspect now, that one was an NF2er. So on the surface, it looked like the way to go, with only a 1 in 19 failure rate. However, if that one was an NF2er then the outcome was 1 for 1 or 100% failure !

Let's face it. We are at an extreme point in our lives. Doctors are short on time and we usually have a communication problem to boot. Therefore it is difficult to be totally rational and analytical so we are very vulnerable and often take the advice of the Doctor assuming "They know best."

I jumped ship and went to another Neurologist, that arranged for me to get GK in Providence.

nichol@...

Re: treatment choices This is a tangent on the earlier CyberKnife posts... stuff that they brought out from the grey matter that may add something and may not... Generally speaking, I think it's especially a matter of really pressing the docs with pointed questions.... The billion dollar question for docs: what are your experiences with this treatment on individuals with NF2? (common problems, not-so-common problems, short- and long-term outcomes based on actual experiences?) Of course, these are the questions to ask the docs using the particular technique, since they are the ones experienced with it. Ideally, the doctors offer this right upfront when discussing the why for the procedure. This ensures realistic expectations on our part. It also seems reasonable to be aware of the claims of detractors of the technique, so that those can be addressed by the practitioner as well. Multiple viewpoints are sometimes messy for us, but they allow us to identify what's important as we wrestle with the variables, to respect the choices others make as they wrestle with the variables, and to (hopefully) feel some sense of empowerment over our collective choices that positively impacts how we live with them. Another quick thought that resurfaced: It's also important to be on the same page as the doc regarding how successful treatment is measured (especially time scale-wise and especially in light of the multiplicity and uncertainty of NF2 tumors all over our bodies). This seems to vary a lot even within any particular treatment method. (think big picture vs. small, body vs. head, wholistic vs. local) mailto:przybysz.3@...

[Guest guest]

Yes, most definitely we have to ask the doctor his/her experiences with NF2, but we have to keep in mind that the opinion may be biased.

In my case I had had AN surgery twice for same tumour. When it regrew the third time, my surgeon recommended FSR. In Canada, a linear accelerator is used to produce the beam that is not well focused.The treatment regime was to be 25 sessions over 5 weeks. We also had an Oncology consult. I was already very leery and wanted to know their results. They had done 19 patients and only 1 had a regrowth. I suspect now, that one was an NF2er. So on the surface, it looked like the way to go, with only a 1 in 19 failure rate. However, if that one was an NF2er then the outcome was 1 for 1 or 100% failure !

Let's face it. We are at an extreme point in our lives. Doctors are short on time and we usually have a communication problem to boot. Therefore it is difficult to be totally rational and analytical so we are very vulnerable and often take the advice of the Doctor assuming "They know best."

I jumped ship and went to another Neurologist, that arranged for me to get GK in Providence.

nichol@...

Re: treatment choices This is a tangent on the earlier CyberKnife posts... stuff that they brought out from the grey matter that may add something and may not... Generally speaking, I think it's especially a matter of really pressing the docs with pointed questions.... The billion dollar question for docs: what are your experiences with this treatment on individuals with NF2? (common problems, not-so-common problems, short- and long-term outcomes based on actual experiences?) Of course, these are the questions to ask the docs using the particular technique, since they are the ones experienced with it. Ideally, the doctors offer this right upfront when discussing the why for the procedure. This ensures realistic expectations on our part. It also seems reasonable to be aware of the claims of detractors of the technique, so that those can be addressed by the practitioner as well. Multiple viewpoints are sometimes messy for us, but they allow us to identify what's important as we wrestle with the variables, to respect the choices others make as they wrestle with the variables, and to (hopefully) feel some sense of empowerment over our collective choices that positively impacts how we live with them. Another quick thought that resurfaced: It's also important to be on the same page as the doc regarding how successful treatment is measured (especially time scale-wise and especially in light of the multiplicity and uncertainty of NF2 tumors all over our bodies). This seems to vary a lot even within any particular treatment method. (think big picture vs. small, body vs. head, wholistic vs. local) mailto:przybysz.3@...

[Guest guest]

Yes, most definitely we have to ask the doctor his/her experiences with NF2, but we have to keep in mind that the opinion may be biased.

In my case I had had AN surgery twice for same tumour. When it regrew the third time, my surgeon recommended FSR. In Canada, a linear accelerator is used to produce the beam that is not well focused.The treatment regime was to be 25 sessions over 5 weeks. We also had an Oncology consult. I was already very leery and wanted to know their results. They had done 19 patients and only 1 had a regrowth. I suspect now, that one was an NF2er. So on the surface, it looked like the way to go, with only a 1 in 19 failure rate. However, if that one was an NF2er then the outcome was 1 for 1 or 100% failure !

Let's face it. We are at an extreme point in our lives. Doctors are short on time and we usually have a communication problem to boot. Therefore it is difficult to be totally rational and analytical so we are very vulnerable and often take the advice of the Doctor assuming "They know best."

I jumped ship and went to another Neurologist, that arranged for me to get GK in Providence.

nichol@...

Re: treatment choices This is a tangent on the earlier CyberKnife posts... stuff that they brought out from the grey matter that may add something and may not... Generally speaking, I think it's especially a matter of really pressing the docs with pointed questions.... The billion dollar question for docs: what are your experiences with this treatment on individuals with NF2? (common problems, not-so-common problems, short- and long-term outcomes based on actual experiences?) Of course, these are the questions to ask the docs using the particular technique, since they are the ones experienced with it. Ideally, the doctors offer this right upfront when discussing the why for the procedure. This ensures realistic expectations on our part. It also seems reasonable to be aware of the claims of detractors of the technique, so that those can be addressed by the practitioner as well. Multiple viewpoints are sometimes messy for us, but they allow us to identify what's important as we wrestle with the variables, to respect the choices others make as they wrestle with the variables, and to (hopefully) feel some sense of empowerment over our collective choices that positively impacts how we live with them. Another quick thought that resurfaced: It's also important to be on the same page as the doc regarding how successful treatment is measured (especially time scale-wise and especially in light of the multiplicity and uncertainty of NF2 tumors all over our bodies). This seems to vary a lot even within any particular treatment method. (think big picture vs. small, body vs. head, wholistic vs. local) mailto:przybysz.3@...

[Guest guest]

Think I would have sued the first doctor for emotional distress and bad judgement!!!!

Carol

losthorizon1@...

Re: treatment choices

My son had a bad experince with a doc in saskatoon...We were told he had a golf ba;; sized tumor above his right eye...he told us it was pushing his right eye out but don't worry about it and come back in a year....I said dont tell me this...you should explain it better to ....I said this is happen ing to him not me....he looked at me and said why should i ...he's only 15 and a kid..... stood up and said BITE ME!!!!...we went home and called a specialist in Edmonton...2 weeks later was in having the tumor out...and we were told we got him in just in time...The damage was already starting....Here in Canada there arent any other options other than surgery....I am happy when some doc's tell us they dont know how to treat this and they try to find some one who know's a little about this....In some ways it's like living ing the dark ages here....Pam

[Guest guest]

Think I would have sued the first doctor for emotional distress and bad judgement!!!!

Carol

losthorizon1@...

Re: treatment choices

My son had a bad experince with a doc in saskatoon...We were told he had a golf ba;; sized tumor above his right eye...he told us it was pushing his right eye out but don't worry about it and come back in a year....I said dont tell me this...you should explain it better to ....I said this is happen ing to him not me....he looked at me and said why should i ...he's only 15 and a kid..... stood up and said BITE ME!!!!...we went home and called a specialist in Edmonton...2 weeks later was in having the tumor out...and we were told we got him in just in time...The damage was already starting....Here in Canada there arent any other options other than surgery....I am happy when some doc's tell us they dont know how to treat this and they try to find some one who know's a little about this....In some ways it's like living ing the dark ages here....Pam

[Guest guest]

Think I would have sued the first doctor for emotional distress and bad judgement!!!!

Carol

losthorizon1@...

Re: treatment choices

My son had a bad experince with a doc in saskatoon...We were told he had a golf ba;; sized tumor above his right eye...he told us it was pushing his right eye out but don't worry about it and come back in a year....I said dont tell me this...you should explain it better to ....I said this is happen ing to him not me....he looked at me and said why should i ...he's only 15 and a kid..... stood up and said BITE ME!!!!...we went home and called a specialist in Edmonton...2 weeks later was in having the tumor out...and we were told we got him in just in time...The damage was already starting....Here in Canada there arent any other options other than surgery....I am happy when some doc's tell us they dont know how to treat this and they try to find some one who know's a little about this....In some ways it's like living ing the dark ages here....Pam

[Guest guest]

AMEN CAROL!!!!!

Re: treatment choices

In my opinion...if you have a cocky doctor that can't be open to you or what other doctors are doing or have done.....KICK THEM TO THE CURB!!!!

Carol

losthorizon1@...