Sorry Steph,
Haven’t been on for a while.
It has been a year in May since I had my DBS!
Can’t quite believe it.
Professor F is a lovely man, very good at putting you at ease.
The first appointment is background info about you and your PD journey.
I would suggest writing out any questions you may have as I can guarantee you will forget!
Best of luck and if you get time let me now how it goes.
Annie 
Hi Annie,
Many thanks for your message. My daughter is coming with me so she will have a list! I will make notes about my journey, so thank you for that. My worry is waiting times as my dyskinesia/dystonia is so much worse now that sometimes it’s difficult to walk.
Best wishes
Steph
I believe the waiting list is 12 months.
That includes the testing.
Best of luck!
Annie
Hi Annie,
I’m on the list! Really liked prof Foltynie. Yes, waiting list is around 12months for assessments then approx 3 months for op if successful. So quite a wait.
I hope you are keeping well. Are all your checks now done locally?
Best wishes
Steph
So very pleased for you Steph,
Professor F really has a way of putting you at ease.
Let me know when you have your testing, I’ll let you know what to expect!
The testing is usually over two days but they put you up in a travel lodge and supply a mini bus to take and return you from the hospital. That said it is walkable in 15 minutes.
I can honestly say I feel brilliant, I actually had a bit of imposter syndrome as I do not look like I have PD now!
I have one more appointment in London in October and then I’m back under the care of my lovely consultant here.
Keep in touch and again so happy you on on the path to DBS!
Annie:)
Hi Steph,
I have been accepted for DBS at Queen’s Square. I am based in London so it is great I can travel to the hosiptal in under an hour. I didn’t need to stay overnight for my two day assessments, which was good, but very worrying, wondering if I would completely freeze up on my journey.
I’ve waited best part of two years, but I think Covid increased the waiting time. I am just waiting to hear when my operation is.
Hi Annie,
That’s amazing to hear you are doing so well.
I will keep in touch, I would really appreciate hearing what to expect with the tests.
Best wishes
Steph
Hi Lindsay,
Gosh two years is a long time to wait isn’t it.
Hopefully you will hear about your op very soon. Please let me know when you hear. Fingers crossed it’s soon.
Take care
Steph
Hi Lindsay
Just wondering if you have a date yet?
Hope you are ok
Best wishes
Steph
Hello Steph,
I hope you are well. No, no date yet, which is surprising as ‘June’ was mentioned as the likely month. I have chased the DBS administrators at Queen’s Square, but no reply yet. I hope I am going to get plenty of notice - really don’t fancy a weeks notice!
Meanwhile, I am having trouble being ‘normal’. I am increasingly flipping between very stiff and uncomfortable to not being able to stay still at all. I was able to ‘manage the condition’, but really not any more. I will be putting so much hope in the operation.
Any news for you yet from Queen’s Square?
I’ll keep you posted.
Regards
Lindsay
Hi Lindsay,
Oh yes disappointing for you not to have a date yet. Could you contact your consultants secretary? I’m sure you know more about ‘the system’ than me as I am very early on in the process. Is it the administrators who organise appointments?
I can understand your putting so much hope in the operation . I really hope you hear very soon!
I feel the same as each week my distonia/dyskinesia seems to be more challenging!
Who is your consultant?
I’m not expecting to hear anything for quite a while as I only had my initial consultation last month.
I might call prof Foltynie secretary in a few months just to see if they can give me any information.
I really hope you hear something very soon .
Do let me know.
Best wishes
Steph
Hi Steph,
I am not too disappointed, it will happen this year.
I read an article by Rory Cellan-Jones this morning. It was titled ‘Ultasound - the future of Parkinson’s Care’? It seems to be new technology and it was being used at Queen’s Square. DBS without the scalpel! Only for private patients at the moment.
I am under Professor Foltynie and team, same as you.
Regards
Lindsay
Hi Steph,
I have my date for DBS procedure, end of July. Just a case of keeping calm now.
I will report back.
Lindsay
Hi Lindsay,
I hope you are keeping well. I have been thinking of you & wondered if you have a date yet for your DBS OP?
Best wishes
Steph
Hi Steph,
I think you missed that I wrote a few days ago that I now have a date (end of July). It’s all go, questionnairs, telephone appointments, and a pre-operation meeting.
We are in the middle of having a kitchen extension built! I think I could have picked a less busy time in my life, but I’ve been told I will be in hospital for two weeks, so maybe the kitchen will be well on its way by the time I return home.
It’s still a date in the calendar at the moment, I think I will get anxious when it is a week to go.
Any news from Queen’s Square for you yet?
Hi Lindsay,
I think our messages are out of sync!
So pleased you have your date! Oh wow, kitchen extension too. Hope it’s not too stressful for you.
I didn’t realise the hospital stay was so long.
I’m sending you all the best wishes, hope all goes well.
I will be very interested in any information when you are feeling up to it.
Nothing for me yet, but I’m still early days on the waiting list.
All the best!
Steph
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Hello Steph,
Well I’m home. Exactly one week since the operation. Really good to be home, of course. I will be taking it very easy for the next week at least, my head feels tender - and it really does hurt when I laugh!
So far I have lost most of my Parkinson’s symptoms (the so called Honeymoon). I did have some brain swelling, and I think this is what has stopped my dyskinesia. It’s been such a relief to be ‘still’.
I was very well looked after at NHNN. It is a scary place, surrounded by seriously unwell people. I just threw myself into it without dwelling too much on it. So glad it is behind me now.
See if you can contact me through the DBS team at the hospital?
Hi Lindsay,
So good to hear the operation is behind you! You sound as if you are doing well.
Sorry for late response, I’ve been away, just home. I have been thinking of you.
Take it easy for a bit, it’s quite a lot for the body to go through.
I hope you continue to be pleased with the results.
So you were in hospital a week? Are you all ‘switched on’ ?
All the best
Steph
Hi Lindsay,
Sounds as if you are doing really well, which is great to hear!
Hope the next adjustment goes well.
Ive not used FB for messaging only for marketplace!
I looked for you but got several people with same name! Is your picture taken on holiday? Sorry to be so vague.
Best wishes
Steph
Hello Steph
i’m doing ok. Lot’s of tweeking to do, but my wriggling has gone. I still have other issues to work on, but it is early days.
Yes, picture is me in Spain, hat and brown legs.
Lindsay