Re: Surgery - UK based - any help welcome - SUSAN

[Guest guest]

Hi

I hope all is well with you, and your family.

We've just reached the end of the assessment and I foudn out of Friday Jenna

will most likely be having surgery. Do you mind if i contact you directly if you

have time in the next week?

Kind regards, Katy

>

> Hi Katy,

>

> We are in the UK, West London based. was diagnosed at 16 weeks - he is

> 9 this year. We tried everything and eventually he had surgery at Great

> Ormond Street Hospital when he was 6 - I wish to God we had had the surgery

> earlier! For us it took at least 2 years from surgical referral to actual

> op. Go for it, find out all you can and try not to be scared by the idea -

> technology is amazing these days - no-one is going to operate on your

> daughter unless they are pretty sure it will help. Feel free to contact me

> directly, more than happy to chat on the phone if you think that might be

> helpful.

>

> With every best wish

>

>

>

> PS - to the best of our knowledge - barring the occasional possible absence

> is now seizure-free (touch wood, fingers crossed, say a little prayer

> etc etc etc)

>

>

>

> From: polymicrogyria [mailto:polymicrogyria ]

> On Behalf Of kswinster

> Sent: 18 March 2011 21:47

> To: polymicrogyria

> Subject: Surgery - UK based - any help welcome

>

>

>

>

>

> Hi everyone.

>

> I'm sorry if I'm asking questions that others have asked before. I've had a

> read through previous posts and have found some really useful info.

>

> My daughter is 6 months and has PMG. We're based in Leeds in the UK and have

> a good team of neurologists. Jenna was admitted at 7 weeks for 4 weeks and

> has been seen weekly/monthly since.

>

> The neuros believe she has focal PMG on the occtipical and parietal lobes

> (back right) of her brain. We had one eeg showing adnormal activity starting

> in multiple places and two (one this week) showing the activity starting in

> the PMG site. Because she was scanned so young there are some question marks

> over if she has other abonrmalities/ So having the eeg supporting the

> arguement for one side was positive.

>

> The neruo we met today was the one who diagnosed jenna at 7 weeks. he's

> really on the ball and keen to get things moving. on the last visit i went

> armed with a list of questions. Today it was simply what else do we try. i

> had nothing else to ask. I even got worried on the way there because i had

> nothing to ask (stupid i know). Jenna has approx 25 seizures a day (IS -

> suspected focal complex partial) and a number of absense i don;t even count.

> We've tried topomax, vigabtrin, phenobarbitone, clobazam and steriods. He

> suggested starting Jenna on a surgery assessment today and booked us in for

> a video eeg on monday. what do i think about this??? i don't know. i wish

> and wish there was another way, a drug that would help. But in my heart i

> sort of knew months ago we may end up here. We now have 3 options

>

> 1 - she responds to the final increase of topomax and clobazam or another

> drug combination works. in the neuro's option this is v unlikely

>

> 2 - she is a candiated for suregry and it works / doesn't

>

> 3 - she isn't a candidate and we keep on the drugs and she possibly lives

> the rest of her life having 25+ seizures a day.

>

> Not sure what to think. If anybody can offer any advice or let me know their

> experience i would be really grateful.

>

> Thank you

>

> Katy x

>

>

>

>

>

>

[Guest guest]

Katy

We are in the States, but are finally getting surgery on august 11. My daughter

is 14, and we've been going through the testing for almost 2 years. Finally I

and the doctors are at peace. Not to say I'm not scared, but I feel like I'm

doing the right thing. I hope you find that place.

Sent from my iPhone

> Hi

>

> I hope all is well with you, and your family.

>

> We've just reached the end of the assessment and I foudn out of Friday Jenna

will most likely be having surgery. Do you mind if i contact you directly if you

have time in the next week?

>

> Kind regards, Katy

>

>

>

> >

> > Hi Katy,

> >

> > We are in the UK, West London based. was diagnosed at 16 weeks - he is

> > 9 this year. We tried everything and eventually he had surgery at Great

> > Ormond Street Hospital when he was 6 - I wish to God we had had the surgery

> > earlier! For us it took at least 2 years from surgical referral to actual

> > op. Go for it, find out all you can and try not to be scared by the idea -

> > technology is amazing these days - no-one is going to operate on your

> > daughter unless they are pretty sure it will help. Feel free to contact me

> > directly, more than happy to chat on the phone if you think that might be

> > helpful.

> >

> > With every best wish

> >

> >

> >

> > PS - to the best of our knowledge - barring the occasional possible absence

> > is now seizure-free (touch wood, fingers crossed, say a little prayer

> > etc etc etc)

> >

> >

> >

> > From: polymicrogyria [mailto:polymicrogyria ]

> > On Behalf Of kswinster

> > Sent: 18 March 2011 21:47

> > To: polymicrogyria

> > Subject: Surgery - UK based - any help welcome

> >

> >

> >

> >

> >

> > Hi everyone.

> >

> > I'm sorry if I'm asking questions that others have asked before. I've had a

> > read through previous posts and have found some really useful info.

> >

> > My daughter is 6 months and has PMG. We're based in Leeds in the UK and have

> > a good team of neurologists. Jenna was admitted at 7 weeks for 4 weeks and

> > has been seen weekly/monthly since.

> >

> > The neuros believe she has focal PMG on the occtipical and parietal lobes

> > (back right) of her brain. We had one eeg showing adnormal activity starting

> > in multiple places and two (one this week) showing the activity starting in

> > the PMG site. Because she was scanned so young there are some question marks

> > over if she has other abonrmalities/ So having the eeg supporting the

> > arguement for one side was positive.

> >

> > The neruo we met today was the one who diagnosed jenna at 7 weeks. he's

> > really on the ball and keen to get things moving. on the last visit i went

> > armed with a list of questions. Today it was simply what else do we try. i

> > had nothing else to ask. I even got worried on the way there because i had

> > nothing to ask (stupid i know). Jenna has approx 25 seizures a day (IS -

> > suspected focal complex partial) and a number of absense i don;t even count.

> > We've tried topomax, vigabtrin, phenobarbitone, clobazam and steriods. He

> > suggested starting Jenna on a surgery assessment today and booked us in for

> > a video eeg on monday. what do i think about this??? i don't know. i wish

> > and wish there was another way, a drug that would help. But in my heart i

> > sort of knew months ago we may end up here. We now have 3 options

> >

> > 1 - she responds to the final increase of topomax and clobazam or another

> > drug combination works. in the neuro's option this is v unlikely

> >

> > 2 - she is a candiated for suregry and it works / doesn't

> >

> > 3 - she isn't a candidate and we keep on the drugs and she possibly lives

> > the rest of her life having 25+ seizures a day.

> >

> > Not sure what to think. If anybody can offer any advice or let me know their

> > experience i would be really grateful.

> >

> > Thank you

> >

> > Katy x

> >

> >

> >

> >

> >

> >