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Deep brain stimulation *update

Hello everyone! I know I haven’t been on in ages but life has been a bit harder than usual recently. So my DBS journey is continuing at what can only be described as my walking speed! Real slow

I had a new MR scan in October in Southampton more detailed my original was done privately so NHS claim they cannot compare the current picture with original? My follow up came in January WOW my brain is covered in scars!! Although it was a good thing for hubby to see I actually have one!!

The main one which seems to be causing all the trouble is on the right side near the top and the size of my ring finger, he says not the worst he had ever seen but pretty bad. I am therefore a prime candidate for DBS great… Southampton cannot do surgery as PCT refuse to fund as not a normal MS symptom/treatment!!

I have now been refered to John Radcliffe Oxford to have the implantation of the electrodes done there, then all the programming and the “controller” will be implemented in Southampton!! Very long winded and quite exhausting to be honest but hopefully when this is done I can stop hitting myself quite so often and get back to two handed typing!!!

Love Jules xx

Sorry that things have been difficult Jules, but I’m so pleased that there may be something that can be done for you! I don’t really know much about it (DBS) but I hope it goes well and please let us know?

Mags xx

Thanks for your reply Mags, DBS has been around for a few years but usually associated with Parkinson’s, my tremor is advancing quite quickly whilst other symptoms are also there the tremor is the worst and most obvious.

It is mainly contained to my left arm but my left leg like to join in when it can, making moving around a real excitement!!

My appointment for the John Radcliffe has arrived 4 weeks on Monday! I am excited but also really nervous it is a huge deal, although the programme brain doctors last week on channel 5 showed the full procedure and the young man had amazing results!!

It is however at 9.30 on a Monday so doing a 50 mile journey at that time on a Monday phew… Good job my hubby is so amazing!

Wow! scary but exciting!

I hope you get good results, please let us know how it goes

Chris

All the best exciting times for you x

wishing you all the very best Jules,watched the young man on brain drs have it done,he cried as it was the 1st time in years he could hold a glass to his mouth,i couldnt stop crying for him,bless him,hope the op is a huge success,for you,i think you are very brave to have it done.

J x

Thanks everyone hoping for the best from this xx

It is tomorrow!! I am officially bricking it now, miserable, moody etc! I know I should be excited it has been a struggle to get this far. What if they say no? I have a huge printed out load of questions to ask. Does everyone go this prepared? I will update tomorrow when I get back. Going on hols to Florida for a week next month, 20th wedding anniversary so anytime after that is do-able!!

Julie x

Well it was an experience thats for sure!! I thought the hospital was lovely very clean!! Mr Fitzgerald - the specialist- really nice guy even though I think I am older than him always a little disconcerting!

The wait is immense 4-6 MONTHS until I can be asssessed I have to have a new scan that is going to be more in depth than any scan I have ever had before! Think there are more pictures of the inside of my head around than the outside lol

After that 2-3 more months until the surgery so worst case scenario it will be early next year. I think I came across really crazy as I was so excited to finally be getting somewhere with it. The nurses were a little bit dismissive suggesting I try drugs that have already proved ineffective or terrible side effects. The risks were fairly daunting 1in 20 risk of infection 1 in 200 stroke 1 in 500 risk to life.

They will do all surgery at the John Radcliffe stay in for 10 days, brain op first if it is succesful after testing they will then 1 week later implant the battery pack!! Like a pacemaker under the skin. Then all the settings can be adjusted as required.

Even though it all sounds fairly major I am still keen to see if I can go ahead with it as the tremor is so rubbish I am struggling to do anything!

Julie x

You sound brave, hope it goes well. Let us know how you get on Lynn

Letter from J.R hospital = really positive they are taking me on!! I am another step further along in my journey!!

So another letter has arrived from the J!R hospital, my copy of letter sent to my GP basically saying they don’t really think I am a good candidate for surgery as I am expecting “unrealistic results” it took 6 weeks from the date of the letter to arrive here!! They want to talk to me again about the surgery and make sure I have “explored other avenues first” so looks like I will be starting again!!! Swear away there I am!!

I have to wait on a new appointment to go back to talk to Mr Fitzgerald again, I think perhaps they hope I will be so bored of it I will just bugger off! If only it was that easy eh!!

Anybody know any meds I could try? I am on Tizanadine 3 at night otherwise I have a nap in the day if anymore taken not helpful when trying to function!!

Anyway Christmas next week!!! Have a wonderful holiday all of you and a happy and healthy 2015 one and all!!!

Jules xx

hiya

have u considered cranial osteopathy?

i get session every 6/8 weeks and will do for rest of my life!

ellie

I’m up to 60Mg of Baclofen/Day and 10Mg Tizanadine for spasticity. Fortunately neither of them makes me drowsy. Ask about Baclofen as well maybe?

My sister-in-law’s friend had DBS for early onset Parkinson’s (I think she is in her forties). It has made a big difference to her. I hope Dr Fitzgerald will explain what is happening when you see him again. It can’t really be that they won’t do it because you are too optimistic about the results - the implication of that would be that if you had thought you weren’t going to get much out of it, then they would have done it (and that would be insane).

Hope you have a good holiday and get some satisfactory answers early on in the new year.

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