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Jan has had his ONS surgery


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Hi all,

A quick update, today Jan has had his surgery, it took two hours longer then they've said but I didn't ask why, was just glad to see him awake :). For the next six weeks he's not allowed to bend, stretch, kneel or climb. The electrodes need to "suture" by scar tissue. Coming 24 hours he has absolute bed rest. The neurostimulator is already set also, both left and right. Because the surgery is still a study, we're not allowed to know the frequency. For now he's doing well and if there will be no complications tonight, he will be home tomorrow.

Now we'll just have to wait and see if it works  :)

Keep you posted,

Elly

 

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Hope he is ok

I had ONS but trial. Kept pacemaker external. I do not recall an insisions in my back, just my head....why the blood and band aid on his back? Different pacemaker location?

My nuerosurgeon said I had to have ONS before DBS or Govt wont pay for it. Says it is steps to final decision of DBS which I ended up having

I wish him well

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Thank you for all the good Luck wishes :D

Jan has been released from the hospital this morning, very tired still but doing well. I'm almost scared to say/write it out loud, but he hasn't had any hit at all since the surgery, not even a shadow! Off course this is much to soon to speak of a great success but this PF time can no one take away from him anymore :D

We have to check the wounds and his temperature very closely to make sure he won't develop an infection, if that does happen, the whole implants must be removed but I have the confidence that won't be necessary  :)

Now we'll just have to be patient and see if this is really working! Think positive!

Elly

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  • 1 month later...

Here I am with a short update about Jan's surgery.

We're in the 8th week after the surgery now and he's doing great, no...... more than great!!! :D

Since the surgery on June 17th, he had only 2 attacks, well we can hardly call them attacks because they didn't got higher than a kip 3!!!

Sometimes he has all the symptoms of an attack, runny nose, teary eye etc. but NO PAIN along with it!

So the conclusion this far is that the device is working for Jan :) :).

We're living a whole different life now but we always remember how it was before surgery, so we're trying to get the best out of each PF day.

Wishing everybody could have this surgery with equal positive outcome!!!!

Greets Elly

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Hi didgens,

The exact name of the surgery is "Occipital nerve stimulation" (ONS), he had the surgery in

Erasmus Medical Center, the Netherlands, LUMC "Leiden University Medical Center",is leading the study. The name of the doctor at LUMC is Dr. Ferrari.

Earlier in this post, I've uploaded a picture that shows how the device is placed in Jan's head and body.

Here are two links which describe the surgery. Hope you find there what you're looking for.

http://www.ncbi.nlm.nih.gov/pubmed/23720502

http://clinicaltrials.gov/ct2/show/NCT01151631

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Thank you all for the good wishes, it's so amazing how this surgery has changed our lives in so many ways!

@Didgens, yes, Jan is part of the study group in the link.

The first 6 months, the device will be set every 6 weeks, stimulation will change in the areas of his head. After these six months they will know exactly what's the best setting for him personally. Untill now the settings of the stimulation have been changed 3 times, both left and right, but all settings are succsessfull, one more than he other but it works!

If you have more questions, please let me know, I'll try to answer them to my best knowledge :-)

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Hi Elly thanks so much. One more question, is there any limitation with the device ? My brother has a pacemaker and he cannot go near certain things .. like slot machines in Las Vegas ,, odd i know .. but im just wondering what if any precautions there are for the device. thanks again !!

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Didgens,

The neurostimulator, as they call it, is the same as a pacemaker. So yes, there are some limitations but very minor.

I don't know if Jan can't get nearby any slot machines (yet) :) but what we do know is that the device will defenatly go off at airport gates. That's why he recieved a card at the hospital which contains a brief explanation of the device and the serial number of it. It is also not possible to get MRI scans, so he has to keep this card with him all the time in case something happens to him or is going on an airplane. Furthermore, there are no limitations at all, at least in Jans case

Elly

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