starting the study on the 1st.

[vapour]

Just an update. I posted how I was accepted into the TNS study.

I have my next app on the 1st. Here I will again have a check up, show my seizure diary...and I will shown how to use the TNS thing...

So, I will try my best perhaps to do a video and put it on youtube, though Im living in a small house with friends right now.. which makes it difficult (im kinda embarassed about making a vid and would like privacy)

Moving back into my own place in mid-feb, just put a deposit down...

Hoping for some normality again.. and also I pray that... Im gonna be in the population of people that REALLY DOES get the treatment FIRST (its a double bind study)

 

[Nakamova]

Good luck Vapour. I hope that even if it turns out that you're not in the first treatment group that you benefit from keeping the diary and going through the process.

 

[hootie]

For the new members (me)...what is TNS:embarrassed:?

 

[Nakamova]

TNS stands for Trigeminal Nerve Stimulation. It involves the implant of a tiny device (sort of like a pacemaker for neurons) that can stimulate the nerve and prevent a seizure. The procedure is relatively new, but it shows great promise -- after about a year, patients with TNS average a 90% reduction in seizures.

There are similar implants for other major cranial nerves, VNS and RNS.

 

[Rae1889]

This would be awesome. You can even document the process in the Library here. Answer the question outline when you get the info for that part. Explain how the device works, and see if you do get any control from it.

I would totally love to here about this more as brain surgery scares me and VNS scares me as its so close to your arteries in your neck, plus I think I read somewhere that you can still sort of see the wires *anyone who has this can you let me know if this is true?*

So what would be helpful to me, *incase you actually get the implant* is whether it scars a lot, whether you can see it under the skin, and whether it gives good control.

Thanks Vapour! Video would be nice too. Seeing it in action.

 

[Rae1889]

Also, is it self activated or does it require the magnet like VNS? And I can't remember if you said you had tonic clonics or not, so that info regarding TC would be great too.
Side effects would be helpful *i read some where that the VNS implant messes with you voice a little*

 

[Cint]

I would totally love to here about this more as brain surgery scares me and VNS scares me as its so close to your arteries in your neck, plus I think I read somewhere that you can still sort of see the wires *anyone who has this can you let me know if this is true?*

I do have the VNS (also had brain surgery), and yes if one looks closely, they can see the wire in the neck. But often times people have told me they just thought the wire was an artery.
And it does mess with my voice, but only when it is charging. It makes my voice very hoarse and difficult to hear. But that is because the vagus nerve is the 10th cranial nerve and passes through the larynx and pharynx.

 

[Rae1889]

oky so the wir still under skin

 

[Cint]

Yes, the wire is under the skin.

 

[Cint]

More info on the Trigmenal Nerve Stimulation
http://www.ele.uri.edu/Courses/ele282/F09/NeilM_1.pdf

Image of the TNS:

 

[vapour]

Hey there.

I get the device on the 1st, it is not going to be under my skin though.... not in this trial.... in the trial you wear 2 electrodes where they would be implanted....it works the same...(its just not implanted under your skin on your forehead)

I will try and do a video for sure, and post a link so if there are any questions you can ask me

Im looking foward to it. As mentioned before the study is a year long and its a double bind. Half group will be getting the treatment the first 6 months and not the latter, and the other group will not get treatment the first 6 months but will get it the latter.

I hope Im in the group that gets it first... even though it will be a bummer if it really works and then after 6 months I go back to more seizures.