[Fizzbw]

Hello, I found you again!!! Anyone who remember me here?

Hope you are all doing ok.

Niki xxx

[Burntmarshmallow]

I know you Nik but it is from while back at Braintalk and f.b. not from here at neurotalk . How Are you??????????? you have motor cortex/deep brain stim right?? it is good to catch up to you again hope you are doing well.
PEACE
BMW...(Tina)

[trainwreck]

Originally Posted by Fizzbw

Hello, I found you again!!! Anyone who remember me here?

Hope you are all doing ok.

Niki xxx

Hey Niki, it's Katie and I just jumped back in a few days ago. I remember you from BT. Glad you're still kicking

[BethO2L]

Don't know you,,but would like to???

Beth

[Fizzbw]

Hiya folks, so glad there are some familiar faces.

For those that don't know me, I'm pleased to meet you and hope to become friends

I'm Niki, 40 YO. I've had TN for nearly 10 years. I had my first MVD early on s's there was a clear compression. Pain got better. I was made redundant at work on my return from surgery, stress!!!! Pain came back. Fell into a hole, and had to move back from London to the family home in Wales. Had a second MVD, no effect, left more constant pain as well.

Did a pain management course that helped a lot. Had a third MVD with Brian Coakham who removed all the Teflon and used a sling instead. Pain was halved for a year or so. Then it came back. I saw Prof Aziz who was very confident DBS would help me. Wales would not fund this procedure, so I had a motor cortex stimulator implanted instead. Biiiiiiiiiig operation.

Had it for over two years now. At first it definitely helped, but then stopped being so effective for no reason. Went into hospital for a concentrated session of adjustments and found there was really bad wire pain. Had another op to revise the wires and a hole in one of the sheaths was found to have a hole in it. Wire pain much reduced but still present on one particular electrode setting. As time has gone on the wire pain is increasing again though not as bad but it's triggering migraines on my right side, which of course triggers the TN on the left. Currently I'm turned down.

The plan now is to turn it off completely for a week ( he won't do it for longer) to see what the baseline is like, then go into hospital for a week or so to do some concentrated mapping and investigate the wire pain again. If nothing works the I will give up on it.

I'm back at the pain clinic as an out patient and this is doing far more good than any medical intervention. But learning to accept the pain and to stop seeking pain relief is very hard work. And sometimes gets rather too close to the evil biopsychosocial model of things.....anyway I'm due for a meeting next week to discuss my medication which at the moment is mainly opioids. Probably won t change this, but look at patches instead of fentanyl lollipops!! I worry as I have no meds for really bad flare ups, as I've had a few lately.

Sorry for the saga!!! Other than these things I'm happy, have a great family and wonderful friends, I have two horses, Cirrus and Doughnut although I can't ride, we do a lot of fun stuff with clicker training. I also have a dog Ellie and a family dog Alfie. The main stress in my life is the benefit system her in the UK and how they are vilifying and damaging sick and disabled people.

Big hugs

Niki xxxx

[Gene2]

Originally Posted by Fizzbw

Hello, I found you again!!! Anyone who remember me here?

Hope you are all doing ok.

Niki xxx

Of course I remember you. It's great to hear from you again. Know what? I wish I could remember my name and password to theses sites.

[BethO2L]

Tho I don't know you,, I can only imagine what you have gone through,,,I have a PNS system that worked great or 7 months but because my TN flared up again the stim is not working as well as before

I have great hope that when I go back in October we will do a better job of controlling the pain,,,,

I admire your courage to do the motor cortex that is one hell o a surgery,,,I hope they find what they need to fix and it makes everything all better!!!

good luck and God bless

[Fizzbw]

Thanks Beth, it's been an interesting ride!!

Gene, delighted to see you here

Niki xxx

[EE03]

Hi Niki,

I'm the same EE03 from BT. Its good to see you post again and hear how you're doing. I'm still the same - a lot of unusal meds, no surgery.

EE

[EE03]

Hi Gene!

Good to see you post here. I also enjoy reading your wife's blog, but I lost the site when my last computer crashed. Anyway, its good to see you post.

Take care, EE