Re: New Member Broome

[Guest guest]

hi jackie,

like i say i had an acustics removed in 97-and to reasure you a little, i had the operation in may and returned to full time study the following term-beit after the long summer holiday. i know what you mean about putting life/work on hold. last time as i was about to finish my degree i crammed my final dissertation into the period prior to the operation-so i suppose in away i did keep on going. the study however was useful as it was abstract and it helped me to focus on the future when there seemed little else that seemed relevant.i don't know whats happening with you but my life certainly did go upside down particulary relating to how people around me responded to the news. my changed in practical terms changed almost unrecognisably but things are more settled this time.

i continued to work when i got the news about these new tumours-i teach in a special school and work for the school advisory service. however when i visited my g.p she signed me off for 2 weeks and gave me prozac. hopefully i'll go back to work on monday and i also want to come off the prozac-i'm out of shock now.

i know of the nf2 group and find there news letters helpful. i have attended a couple of meetings but sometimes find these more upsetting than helpful. like i said after the operation i got back to normal and tried to forget about it.

my surgeons i am sure are fantastic however seem to lack interpersonal skills and i have been given lots of misinformation this time round-eg incorrect scan results.

thank you for replying-do write ask me anything-i'll do my best

by the way what is your job?? and where are you being treated? julie

>From: jackie williams

>Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: New Member Broome >Date: Thu, 28 Nov 2002 12:49:45 +0000 (GMT) > > >Hi and welcome. >I was diagnosed with bilateral acoustic neuroma and NF2 only this year. >I am due to have an operation to remove the tumour on my right hearing nerve anytime now,though since the diagnosis all sorts of other things seem to have cropped up,some related to NF2 ,others not so... >I can totally empathise with your feelings about having another operation,let alone coming to terms to what has happened to you so far. >All I can say is that if you want to offload,ask any questions etc,please feel free to do so. >I don't know about your doctors,but mine have been brilliant to date.They have explained everything to me in detail,and have provided plenty of support. >Thyere is also an organisation ---The NF2 support group,which has bases around the country and meet on a regular basis which have also provided good support and information. >Good luck with everything,and I hope all goes well. > >Ps.What i would like to know,is what happens re ones work,my organisation have decided to keep me off work since being told of the diagnosis.An opinion concurred with ones own doctors..not knowning how this thing progresses(as it seems to differ with each individual),its difficult to plan ones life...thats the bit that i find most distressing and how it then affects ones family. > >regards jackie > > Jennette wrote:Name: julie broome >Location: england >email: broomejulie@... >Relationship: Patient >Why I'd like to join: >i was diagnosed in 98 after 2 brain tumours appeared-this was after my >surgeon had suspected i had nf2 after removing 3 tumours from my hearing >nerve. > >i don't/didnt think about nf2 much as the brain tumours were small-now >they are big and need removing > >the thought of another big operation-risks and recovery time is very >frightening > >also the reality that more may follow > > > > > >

[Guest guest]

hi jackie,

the sis team are easier than school so 2nd half of week going easier. good to be back and needed again. don't assume i'm brill though still very wobbly emotionally and physically.

i've been given the same advice as you on tumour treatment choice. i have however got a referal for FRS at sheffield. don't know answers -does anyone, but think it would be helpful to find out everything.

my partner i met or became my partner last time when my ANs were removed-he was one of the few people that would allow me to talk and was useful to me. so we've sort of done it once together and feel that may help.

any news of when your op may be if you decide thats what your doing.

hope christmas distractions are going well-at the moment i view all things as being created for my amusement or distraction as nothing else seems too real or important apart from my family ofcourse.

how old are you-sorry very noisy!! i'm 35 first tumours out at 29-think they started to grow at 25. i'm thinking is it a 5 year cycle in my case-but am sure nothing could be that easily predictable.

sorry not really a good day today-just feeling very angry inconvenient timing no warning-very irrational i know, but it would be so much beter if i could plan for this disruptive inturuption to real life.

hope your doing ok

sorry for moaning

julie

>From: jackie williams

>Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: New Member Broome >Date: Wed, 4 Dec 2002 17:40:55 +0000 (GMT) > > >Hi , >Sorry to hear yesterday did'nt go too well..Though I know what you mean re the insensitive nature of some.I usually pop back to work every couple of weeks,but I think you are right in that people do not know what to say. >The majority of mine pretend I've nothing wrong with me at all,or its a bit like the "flu"! So you cant win either way. >My boss and immediate peers though are completely different,want to know all the details etc,have searched the net and are relatively well versed,so will allow me to talk about it a bit,which helps you come to terms with things and puts things into perspective ...I think this has helped me a lot..it also keeps things normal,whatever that may mean. >The joke is that I'm researching this condition at the moment and that i will come back,armed with stuff I want to do..as its something new for us...you never know,I may just do that.So any information welcomed for the ways support from health and social services can be had or wanted. >I've been reading all the stuff about operations versus FRS, at the moment(thanks NF2 crew),still not sure whether this operation is the best way forward,but my Doctors do not seem keen on FRS though they do say its ultimately my decision..thanks! >Barrie thats my partner,is worried re the possible maliganacy in the future(thats what we have been told,there's a high risk,not yet researched enough but enough casesa round the world to warrant caution),so they do not advocate it,what are you thoughts on this? >Barrie has been and is great with all of this(bit of a shock as I'm the one who never gets ill or is off sick..so big change),though i do appreciate it must be difficult living with all those possibilities of future growths,regrowths and other bloody awlful things one reads and is hearing about...its a bit like a waiting time bomb.How's your family and partner dealing with it.Its difficult enough for us to find people to talk to,god knows about them eh. >We dont have any children,apparently thats to do with this(now they tell us),if I'm biotter about anything thing,its probably that,as I have had numerous miscarriges and am now informed that a blood and gene test should have been carried out in the past...Well its always good in hindsight is'nt it. >We do however have two dogs(freud would say something to that), lovely that they are,not too intelligent though! Good company. >Once its settled down at work,it will be fine.As you say with Christmas coming up you will be busy and distracted,but then again so will all the others and low and behold things will be relatively "normal" again! People forget so easily.... >Congrats on the diploma course,it makes sense thinking ahead like that..I'm looking at course for next year(bit difficult with not knowing when this op will be),but I wanted to do something similar,is it a course you would advocate?Where did you study? >However, We are at present learning welsh..so that should tide me over...Bora da and all that.Got quite excited yesterday as i could say all my numbers..Thought I could use that and look at a diploma or course of some sort in deaf awareness. >I will probably get all the support form our Occuaptional health section re note takers etc as In Camden they are well up in all that,well we arer one of Tony's babes! >In the meantime I will enjoy our view here and look over the sea,towards the ranges of the Cader idris and Snowdon!!!Makes you sick eh!! Dont worry,with the gales lately its not all roses here and it is nice to be able to pop down to london when we want. >Not sure if i will want to commute again,when i go back..still thats another decision. >Prof Ramsden seems to be the head man in this field or so i'm led to believe here...we were offered Manchester,though its a bit of a trek from here,at least with oxford we can stay at my Dads when we are down,which takes some of the pressure off. >All I've heard about him is good,sorry to hear that the aftercare was'nt so good,what is it with the health service?I know the ops are important,but lets face it the aftercare is paramount for one to recover quickly. I have a friend who when she went into hospital,had a relative clean her room before hand particularly the bathroom!!! I thin k I'd better prepare now!. >Anyhow good luck with work,speak to you soon.Take care >Jackie >roome wrote: >hi jackie, > >went back to work yesterday-still a bit wobbly emotionally and physically.people don't know what to say i think it was easier for them when i was off so they could feel sorry for me but not have to deal with me as such. i teach 3 days and work for the advisory service 2 days and like you i do training. being with the kids has been good-and christmas is a good distraction. one of my staff told me today she felt i was cutting her out and i wasnt coping. do people go on courses to be insensitive or feel as though they have a right to your inner most feelings??(doubt they could cope if we told them). so i told her what the doctors said and she said 'well what about the positives what positive things came out of your meeting-so apart from telling her the nurses seemed friendly there was little to say. > >in 97 i had my AN removed in manchester by prof ramsden -he did a very good job-13hour operation-no facial problems (apart from i cant cry out of one eye) no hearing left in that ear but he did a good operation > >after care was very poor in the hospital partly because it was the ENT ward and they were used to treating people who were not so ill-so basic care bathing, eating was very poor.\i dont know if it has changed that was 97. > >afterwards they said theyd scan every year after the 2 new tumours were found then after they found them growing slower they said thed do it 2 yearly-but i asked them to make it yearly they did thank goodness as they have now grown by a third in a year > >unfortunately they gave me the wrong scan results when they scanned me this march i only got the correct ones this november. my new surgeon wanted to scan me 6 monthly but ofcourse 8 months had passed in this time so by the time its processed it will probably be 10 months. > >i asked about work because i know of someone with nf2 who works for the health service i think she has an admin job and is responsible for quite a lot of people (perhaps like yours) they put in text machines and gave her an interptur and note taker to keep her working when her 2nd AN was removed. > >i have just finished a 2 year advanced diploma so i am qualified to teach deaf kids incase my hearing goes in my other ear so i can keep on working. > >occupational health should be able to help you they support you staying in work WITH SUPPORT where necessary prior to the operation and can help you come back to work gradually post operativly. > >i dont know if this helps but being in limbos hard isnt it > >your g.p is amazing!!-i know people are trying to be kind but isnt better to say nothing sometimes > >hope things go well-what family have you got i've a daughter of 14 and a partner. my dad is local my sister isn't. > >julie > > > >From: jackie williams >Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: New Member Broome >Date: Mon, 2 Dec 2002 21:57:29 +0000 (GMT) > > >Hi , >Glad to know its not all doom and gloom and that life goes on.... >Since the diagnosis,my doctors have signed me off sick! In hindsight i can see that It was the right decision.However, as i am now feeling much better,cant wait to get back... >Initially they were concered as I was experiencing severe headaches and sickness,so it was a constant round of tests,different doctors etc.Basically they stated that I had to stop work. >There was also an added problem,in that they have found complications with my blood!So the operation had to wait until thats sorted out,though they seem to be saying at the moment that they will go ahead. >My work have been great,but they equally have reacted in a way I would not have expecvted,which is to stop work and wait until the operation until I can return.Which is good on the one hand -no pressure,though pretty boring when you are feling ok. >I currently work in Social services as a Contracts Manager for domicillary,respite,hospital discharge care etc,and manage a team of thirteen,which as you can imagine can be rather hectic. I also run quite a lot of training and am responsible for all contracts to be monitored and evaluated. >Its been interesting being off in that,one gets another perspective of care services. >As i live in North Wales, i have found it rather difficult to access servcies and to receive very primary information on what support is offered,so i will be using this to look at services offered in the future,might as well use this,dont you think?At the moment I am looking at ways in which support can be offered to users with this diagnosis or who are hard of hearing, or deafened in adulthood.... >On a lighter note I am also learning Welsh at the moment with my partner(he's welsh),so it takes the edge off and provides a bit of normality. >I know what you mean about orthers perception ,well I suppose its like anything a learning curve,and you certainly get a lot of those. >You say you work for the schools advisory services,how have they been with you and what support has there been for you. >Did you find some of your friends and colleagues have trouble getting to grips with NF2? Overall mine have been great,though there does seem to be this feeling that I am unable suddenly to do anything(i probably make it worse as my balance is a bit wobbly to say the least,on a good day i resemble the leaning tower of pisa !),or that i am about to "pop off". I gather that upon hearing about the condition it was straight to the internet to find information,needless to say some of it was rather harrowing and downright scary.So i think there is a case for further information on this ,possibly via the media.It was interesting to read some of the groups discussions about this and about how they could get the balance. >My doctors are great,very balanced in what they say,however my GP though good seems a bit pessimistic(at my last meeting with her,she told me to find Jesus,as science had no answer,but Jesus was a "miracle maker" -believe me they were her words totally),threw me a bit to say the least,though it was kindly meant. >I am currently being treated at Oxford,Radcliffe infirmary,very good hospital.I also attend an NF2 clinic there and there is also ongoing support offered via them as well ,which has been good,for my family at least.I was lucky in that i was offered a choice of hospitals(though if I am honest it has helped working for social services and health and knowing the system).There interpersonal skills are also recommeded.Very people orientated. >The system in Wales is not so good,nor it would seem are the recommendations with regards to treatment and ones choices..so I have been lucky in that respect. >How has your'e experience been?What hospital are you being seen at? >Anyhow,hope all goes well with you,let me know how youn get on. >Regards for now, >Jackie > > > > julie broome >wrote: >hi jackie, > >like i say i had an acustics removed in 97-and to reasure you a little, i had the operation in may and returned to full time study the following term-beit after the long summer holiday. i know what you mean about putting life/work on hold. last time as i was about to finish my degree i crammed my final dissertation into the period prior to the operation-so i suppose in away i did keep on going. the study however was useful as it was abstract and it helped me to focus on the future when there seemed little else that seemed relevant. >i don't know whats happening with you but my life certainly did go upside down particulary relating to how people around me responded to the news. my changed in practical terms changed almost unrecognisably but things are more settled this time. > >i continued to work when i got the news about these new tumours-i teach in a special school and work for the school advisory service. however when i visited my g.p she signed me off for 2 weeks and gave me prozac. hopefully i'll go back to work on monday and i also want to come off the prozac-i'm out of shock now. > >i know of the nf2 group and find there news letters helpful. i have attended a couple of meetings but sometimes find these more upsetting than helpful. like i said after the operation i got back to normal and tried to forget about it. > >my surgeons i am sure are fantastic however seem to lack interpersonal skills and i have been given lots of misinformation this time round-eg incorrect scan results. > >thank you for replying-do write ask me anything-i'll do my best > >by the way what is your job?? and where are you being treated? > julie > >From: jackie williams >Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: New Member Broome >Date: Thu, 28 Nov 2002 12:49:45 +0000 (GMT) > > >Hi and welcome. >I was diagnosed with bilateral acoustic neuroma and NF2 only this year. >I am due to have an operation to remove the tumour on my right hearing nerve anytime now,though since the diagnosis all sorts of other things seem to have cropped up,some related to NF2 ,others not so... >I can totally empathise with your feelings about having another operation,let alone coming to terms to what has happened to you so far. >All I can say is that if you want to offload,ask any questions etc,please feel free to do so. >I don't know about your doctors,but mine have been brilliant to date.They have explained everything to me in detail,and have provided plenty of support. >Thyere is also an organisation ---The NF2 support group,which has bases around the country and meet on a regular basis which have also provided good support and information. >Good luck with everything,and I hope all goes well. > >Ps.What i would like to know,is what happens re ones work,my organisation have decided to keep me off work since being told of the diagnosis.An opinion concurred with ones own doctors..not knowning how this thing progresses(as it seems to differ with each individual),its difficult to plan ones life...thats the bit that i find most distressing and how it then affects ones family. > >regards jackie > > Jennette wrote:Name: julie broome >Location: england >email: broomejulie@... >Relationship: Patient >Why I'd like to join: >i was diagnosed in 98 after 2 brain tumours appeared-this was after my >surgeon had suspected i had nf2 after removing 3 tumours from my hearing >nerve. > >i don't/didnt think about nf2 much as the brain tumours were small-now >they are big and need removing > >the thought of another big operation-risks and recovery time is very >frightening > >also the reality that more may follow > > > > > >

[Guest guest]

Hi ,glad to hear the second half of the week has proved a wee bit easier than the first..though entirely understand that you still feel a bit wobbly and emoitional,I think that is to be expected(though doesnt make it any easier).

I understand how you feel about chrimbo..I feel a bit the same.Well at the moment i feel as if I am in "limbo"land,cant plan anything,limited on what "others"will allow me to do..so I am just merrily buying baubles for the tree . Christmas is also a biot funny for us this year as my Mum died suddenly on the 18th December ,and this is the second year without her.so its all a bit strange..you want to enjoy yourself but equally feel guilty if you do.Its obviously not helped with my "news" this year. At the moment I just want whatever has to be done,done.And to then be able to get on with things,though i know thats a bit unreasonable as there will be other things i will have to deal with...thats the rub is'nt it? You say you feel yours is five year cycle,makes you think does'nt it..well I hope it isnt and the worst you have had to deal with is gone.

I don't know about you you,but you dont think about it everyday and want to just go on as normal..but its something that is always hanging over you...listening to the NF2 crew,it makes you feel lucky(if that it is an appropriate word or right thing to say)when you hear of what others are having to go through or deal with.

Glad to hear you have support from your partner and family,as I say mine have been great and it helps....

Oh yes and I'm 42 and these things I have been told were probably growing fifteen years ago!!!Perhaps i will ahve a 15year cycle..I should be so lucky!!!!

Oh forgot to ask,where are you based??

take care and have a good weekend

jackie

julie broome wrote:

hi jackie,

the sis team are easier than school so 2nd half of week going easier. good to be back and needed again. don't assume i'm brill though still very wobbly emotionally and physically.

i've been given the same advice as you on tumour treatment choice. i have however got a referal for FRS at sheffield. don't know answers -does anyone, but think it would be helpful to find out everything.

my partner i met or became my partner last time when my ANs were removed-he was one of the few people that would allow me to talk and was useful to me. so we've sort of done it once together and feel that may help.

any news of when your op may be if you decide thats what your doing.

hope christmas distractions are going well-at the moment i view all things as being created for my amusement or distraction as nothing else seems too real or important apart from my family ofcourse.

how old are you-sorry very noisy!! i'm 35 first tumours out at 29-think they started to grow at 25. i'm thinking is it a 5 year cycle in my case-but am sure nothing could be that easily predictable.

sorry not really a good day today-just feeling very angry inconvenient timing no warning-very irrational i know, but it would be so much beter if i could plan for this disruptive inturuption to real life.

hope your doing ok

sorry for moaning

julie

>From: jackie williams

>Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: New Member Broome >Date: Wed, 4 Dec 2002 17:40:55 +0000 (GMT) > > >Hi , >Sorry to hear yesterday did'nt go too well..Though I know what you mean re the insensitive nature of some.I usually pop back to work every couple of weeks,but I think you are right in that people do not know what to say. >The majority of mine pretend I've nothing wrong with me at all,or its a bit like the "flu"! So you cant win either way. >My boss and immediate peers though are completely different,want to know all the details etc,have searched the net and are relatively well versed,so will allow me to talk about it a bit,which helps you come to terms with things and puts things into perspective ...I think this has helped me a lot..it also keeps things normal,whatever that may mean. >The joke is that I'm researching this condition at the moment and that i will come back,armed with stuff I want to do..as its something new for us...you never know,I may just do that.So any information welcomed for the ways support from health and social services can be had or wanted. >I've been reading all the stuff about operations versus FRS, at the moment(thanks NF2 crew),still not sure whether this operation is the best way forward,but my Doctors do not seem keen on FRS though they do say its ultimately my decision..thanks! >Barrie thats my partner,is worried re the possible maliganacy in the future(thats what we have been told,there's a high risk,not yet researched enough but enough casesa round the world to warrant caution),so they do not advocate it,what are you thoughts on this? >Barrie has been and is great with all of this(bit of a shock as I'm the one who never gets ill or is off sick..so big change),though i do appreciate it must be difficult living with all those possibilities of future growths,regrowths and other bloody awlful things one reads and is hearing about...its a bit like a waiting time bomb.How's your family and partner dealing with it.Its difficult enough for us to find people to talk to,god knows about them eh. >We dont have any children,apparently thats to do with this(now they tell us),if I'm biotter about anything thing,its probably that,as I have had numerous miscarriges and am now informed that a blood and gene test should have been carried out in the past...Well its always good in hindsight is'nt it. >We do however have two dogs(freud would say something to that), lovely that they are,not too intelligent though! Good company. >Once its settled down at work,it will be fine.As you say with Christmas coming up you will be busy and distracted,but then again so will all the others and low and behold things will be relatively "normal" again! People forget so easily.... >Congrats on the diploma course,it makes sense thinking ahead like that..I'm looking at course for next year(bit difficult with not knowing when this op will be),but I wanted to do something similar,is it a course you would advocate?Where did you study? >However, We are at present learning welsh..so that should tide me over...Bora da and all that.Got quite excited yesterday as i could say all my numbers..Thought I could use that and look at a diploma or course of some sort in deaf awareness. >I will probably get all the support form our Occuaptional health section re note takers etc as In Camden they are well up in all that,well we arer one of Tony's babes! >In the meantime I will enjoy our view here and look over the sea,towards the ranges of the Cader idris and Snowdon!!!Makes you sick eh!! Dont worry,with the gales lately its not all roses here and it is nice to be able to pop down to london when we want. >Not sure if i will want to commute again,when i go back..still thats another decision. >Prof Ramsden seems to be the head man in this field or so i'm led to believe here...we were offered Manchester,though its a bit of a trek from here,at least with oxford we can stay at my Dads when we are down,which takes some of the pressure off. >All I've heard about him is good,sorry to hear that the aftercare was'nt so good,what is it with the health service?I know the ops are important,but lets face it the aftercare is paramount for one to recover quickly. I have a friend who when she went into hospital,had a relative clean her room before hand particularly the bathroom!!! I thin k I'd better prepare now!. >Anyhow good luck with work,speak to you soon.Take care >Jackie >roome wrote: >hi jackie, > >went back to work yesterday-still a bit wobbly emotionally and physically.people don't know what to say i think it was easier for them when i was off so they could feel sorry for me but not have to deal with me as such. i teach 3 days and work for the advisory service 2 days and like you i do training. being with the kids has been good-and christmas is a good distraction. one of my staff told me today she felt i was cutting her out and i wasnt coping. do people go on courses to be insensitive or feel as though they have a right to your inner most feelings??(doubt they could cope if we told them). so i told her what the doctors said and she said 'well what about the positives what positive things came out of your meeting-so apart from telling her the nurses seemed friendly there was little to say. > >in 97 i had my AN removed in manchester by prof ramsden -he did a very good job-13hour operation-no facial problems (apart from i cant cry out of one eye) no hearing left in that ear but he did a good operation > >after care was very poor in the hospital partly because it was the ENT ward and they were used to treating people who were not so ill-so basic care bathing, eating was very poor.\i dont know if it has changed that was 97. > >afterwards they said theyd scan every year after the 2 new tumours were found then after they found them growing slower they said thed do it 2 yearly-but i asked them to make it yearly they did thank goodness as they have now grown by a third in a year > >unfortunately they gave me the wrong scan results when they scanned me this march i only got the correct ones this november. my new surgeon wanted to scan me 6 monthly but ofcourse 8 months had passed in this time so by the time its processed it will probably be 10 months. > >i asked about work because i know of someone with nf2 who works for the health service i think she has an admin job and is responsible for quite a lot of people (perhaps like yours) they put in text machines and gave her an interptur and note taker to keep her working when her 2nd AN was removed. > >i have just finished a 2 year advanced diploma so i am qualified to teach deaf kids incase my hearing goes in my other ear so i can keep on working. > >occupational health should be able to help you they support you staying in work WITH SUPPORT where necessary prior to the operation and can help you come back to work gradually post operativly. > >i dont know if this helps but being in limbos hard isnt it > >your g.p is amazing!!-i know people are trying to be kind but isnt better to say nothing sometimes > >hope things go well-what family have you got i've a daughter of 14 and a partner. my dad is local my sister isn't. > >julie > > > >From: jackie williams >Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: New Member Broome >Date: Mon, 2 Dec 2002 21:57:29 +0000 (GMT) > > >Hi , >Glad to know its not all doom and gloom and that life goes on.... >Since the diagnosis,my doctors have signed me off sick! In hindsight i can see that It was the right decision.However, as i am now feeling much better,cant wait to get back... >Initially they were concered as I was experiencing severe headaches and sickness,so it was a constant round of tests,different doctors etc.Basically they stated that I had to stop work. >There was also an added problem,in that they have found complications with my blood!So the operation had to wait until thats sorted out,though they seem to be saying at the moment that they will go ahead. >My work have been great,but they equally have reacted in a way I would not have expecvted,which is to stop work and wait until the operation until I can return.Which is good on the one hand -no pressure,though pretty boring when you are feling ok. >I currently work in Social services as a Contracts Manager for domicillary,respite,hospital discharge care etc,and manage a team of thirteen,which as you can imagine can be rather hectic. I also run quite a lot of training and am responsible for all contracts to be monitored and evaluated. >Its been interesting being off in that,one gets another perspective of care services. >As i live in North Wales, i have found it rather difficult to access servcies and to receive very primary information on what support is offered,so i will be using this to look at services offered in the future,might as well use this,dont you think?At the moment I am looking at ways in which support can be offered to users with this diagnosis or who are hard of hearing, or deafened in adulthood.... >On a lighter note I am also learning Welsh at the moment with my partner(he's welsh),so it takes the edge off and provides a bit of normality. >I know what you mean about orthers perception ,well I suppose its like anything a learning curve,and you certainly get a lot of those. >You say you work for the schools advisory services,how have they been with you and what support has there been for you. >Did you find some of your friends and colleagues have trouble getting to grips with NF2? Overall mine have been great,though there does seem to be this feeling that I am unable suddenly to do anything(i probably make it worse as my balance is a bit wobbly to say the least,on a good day i resemble the leaning tower of pisa !),or that i am about to "pop off". I gather that upon hearing about the condition it was straight to the internet to find information,needless to say some of it was rather harrowing and downright scary.So i think there is a case for further information on this ,possibly via the media.It was interesting to read some of the groups discussions about this and about how they could get the balance. >My doctors are great,very balanced in what they say,however my GP though good seems a bit pessimistic(at my last meeting with her,she told me to find Jesus,as science had no answer,but Jesus was a "miracle maker" -believe me they were her words totally),threw me a bit to say the least,though it was kindly meant. >I am currently being treated at Oxford,Radcliffe infirmary,very good hospital.I also attend an NF2 clinic there and there is also ongoing support offered via them as well ,which has been good,for my family at least.I was lucky in that i was offered a choice of hospitals(though if I am honest it has helped working for social services and health and knowing the system).There interpersonal skills are also recommeded.Very people orientated. >The system in Wales is not so good,nor it would seem are the recommendations with regards to treatment and ones choices..so I have been lucky in that respect. >How has your'e experience been?What hospital are you being seen at? >Anyhow,hope all goes well with you,let me know how youn get on. >Regards for now, >Jackie > > > > julie broome >wrote: >hi jackie, > >like i say i had an acustics removed in 97-and to reasure you a little, i had the operation in may and returned to full time study the following term-beit after the long summer holiday. i know what you mean about putting life/work on hold. last time as i was about to finish my degree i crammed my final dissertation into the period prior to the operation-so i suppose in away i did keep on going. the study however was useful as it was abstract and it helped me to focus on the future when there seemed little else that seemed relevant. >i don't know whats happening with you but my life certainly did go upside down particulary relating to how people around me responded to the news. my changed in practical terms changed almost unrecognisably but things are more settled this time. > >i continued to work when i got the news about these new tumours-i teach in a special school and work for the school advisory service. however when i visited my g.p she signed me off for 2 weeks and gave me prozac. hopefully i'll go back to work on monday and i also want to come off the prozac-i'm out of shock now. > >i know of the nf2 group and find there news letters helpful. i have attended a couple of meetings but sometimes find these more upsetting than helpful. like i said after the operation i got back to normal and tried to forget about it. > >my surgeons i am sure are fantastic however seem to lack interpersonal skills and i have been given lots of misinformation this time round-eg incorrect scan results. > >thank you for replying-do write ask me anything-i'll do my best > >by the way what is your job?? and where are you being treated? > julie > >From: jackie williams >Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: New Member Broome >Date: Thu, 28 Nov 2002 12:49:45 +0000 (GMT) > > >Hi and welcome. >I was diagnosed with bilateral acoustic neuroma and NF2 only this year. >I am due to have an operation to remove the tumour on my right hearing nerve anytime now,though since the diagnosis all sorts of other things seem to have cropped up,some related to NF2 ,others not so... >I can totally empathise with your feelings about having another operation,let alone coming to terms to what has happened to you so far. >All I can say is that if you want to offload,ask any questions etc,please feel free to do so. >I don't know about your doctors,but mine have been brilliant to date.They have explained everything to me in detail,and have provided plenty of support. >Thyere is also an organisation ---The NF2 support group,which has bases around the country and meet on a regular basis which have also provided good support and information. >Good luck with everything,and I hope all goes well. > >Ps.What i would like to know,is what happens re ones work,my organisation have decided to keep me off work since being told of the diagnosis.An opinion concurred with ones own doctors..not knowning how this thing progresses(as it seems to differ with each individual),its difficult to plan ones life...thats the bit that i find most distressing and how it then affects ones family. > >regards jackie > > Jennette wrote:Name: julie broome >Location: england >email: broomejulie@... >Relationship: Patient >Why I'd like to join: >i was diagnosed in 98 after 2 brain tumours appeared-this was after my >surgeon had suspected i had nf2 after removing 3 tumours from my hearing >nerve. > >i don't/didnt think about nf2 much as the brain tumours were small-now >they are big and need removing > >the thought of another big operation-risks and recovery time is very >frightening > >also the reality that more may follow > > > > > >