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Spinal nerve stimulator/spinal cord stimulator

Schwannomatosis is a form of neurofibromatosis that causes tumors called schwannomas to grow on the outer covering (sheath) of the nerve. Individuals with schwannomas do not develop the auditory tumors associated with NF2. It is unclear how many people suffer from this disorder but some reports indicate that schwannomatosis may occur in approximately 1 in 40,000 births similar to NF2. Pain is usually the first symptom of schwannomatosis.

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Spinal nerve stimulator/spinal cord stimulator

Postby Myy » Thu May 21, 2009 10:50 am


I would like to hear about peoples experiences with a spinal cord stimulator. What happends during the trial period and how does the trial implant stay put? How was the operation? How big is the device they implant in? Is the device on all the time or does one start it only when in pain? Can one swim, run and live otherwise normal life with it?

My biggest consern is about the possibility that one might one day need a MRI scan due to new tumor and the device might be contraindication then. I found some articles online that described some cases where they had made a scan (to a person with a spinal cord stimulator), but I guess it´s rare. I´m not too keen on CT scans due the radiation dosage and also CT isn´t as accurate or sencitive to schwannomas as MRI. My friend from work is a radiologist and he said that some devises are MRI compatible. Does anybody happend to know which are?

I have intolerable pain in my leg due to 5 operations (to remove schwannomas) and pregabalin isn´t helping enough and I get really nauseous if I use strong pain killers. Now I read about this spinal nerve stimulator and I´m wondering if it might help.

Please try to ignore possible misspells. I´m from Finland so my english might be flawed :P
Probable segmental schwannomatosis. 6 schwannomas removed in 5 operations. Waiting the results from genetic testing..
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Re: Spinal nerve stimulator/spinal cord stimulator

Postby Myy » Tue May 26, 2009 2:10 pm

Test reply.
Probable segmental schwannomatosis. 6 schwannomas removed in 5 operations. Waiting the results from genetic testing..
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Joined: Tue May 19, 2009 10:27 am
Location: Finland/Europe

Re: Spinal nerve stimulator/spinal cord stimulator

Postby Kitty Lover » Tue May 26, 2009 3:08 pm

Sorry - I'm replying just so you didn't think I was ignoring you. I really couldn't help you with your information you want to know. I have a spinal cord tumor, but don't need a stimulator. Also my tumor is a neurofibroma and not a Schwanoma!
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Kitty Lover
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Re: Spinal nerve stimulator/spinal cord stimulator

Postby shellyb » Sat Jun 06, 2009 5:19 pm

hi there sorry I just saw your post
I have a spinal stimulator. I had the permanet one put in back n Nov and i don't know what I would do without it okay here is what I know from start to now
You will go and talk to your doctor then you will have to talk to a psychologist to make sure that you are stable enough to know the risks that are involved, which are from not working to paralysis. okay once you made it over that, you will have a temporary one put in which will last something like 10 days too see if it will work. during this time you can NOT bathe because the leads are on the outside of your body and can not get wet. you can not bend, reach up with your hands over your hear (so if you do have this done wear a button down shirt to the procedure) then if you feel any type of relief they will set you up for a permanet one.i do believe it is within 6 weeks so scar tissue won't form. oh I forgot to mention during the procedure, they give you "happy" medicine so you are n lala land but not totally out. then they will give you your spinal and insert the device you will have on in your butt (yup)also the disc they put in your butt is smaller then the palm of my hand and guess what you get to recharge you butt and I am not kidding in order to charge your batter you charge the charger then put the charger on your butt (WARNING DO NOT WEAR LIGHT COLORED CLOTHES WITH THIS AND GO OUT IN PUBLIC YOUR BUTT WILL LIGHT UP GREEN :D AND YOU CAN SEE THROUGH THE CLOTHES) okay now they wake you up and then they have the rep. from boston scientific come in and program your device so where you are feeling the pain they try to get the program to cover that area. this can take up to 3-4 hours but usually it is quicker. they go to recovery and the rep will come visit and teach you this stuff about your remote control IF YOU HAVE KIDS DON'T LET THEM GET THEIR PAWS ON IT OR ELSE PAY BACK TIME ;) ) now when they did mine at first it the sensation felt like it was pulsing they can fix that so it can go slower fast or consistant (that is what I have)
now for the biggy you can not bend, raise your hands over your head, lift more then 5 pounds twist for like 3-4 months after. it is a pain. I made several appt with my hair stylist to wash my hair (due to the muscle loss in my leg I can't stand up in a shower so I have to take baths and I wash my hair in the sink but since I can't bend for that time I had it washed by her) you aren't suppose to drive with it on, oops I forget it is on. you can increase the intensity or decrease it. if you aren't in pain shut it off. you don't have to have it on all of the time. the reason why you can't do the things I say is scar tissue has to be able to grow to hold it in place or else the electrode can move and you won't have the coverage. a week after i had the permanet one put in, I feel and now I had to have it "screwed in"
also trust me when I say this i know this is going to sound awkward it does feel weird at first, but you think everyone can hear the device and see your leg vibrate, they can't it took me a while to finally be convinced that no one can see my leg vibrate or hear it. one last thing that I can think of, it take a good 3 hours to fully recharge your battery, so you can do it one hour every couple of days (that is what I do charge every 2 days for an hour) I don't like the belt I like the sticky tape/pad that they give you It doesn't move like the belt.
Well that's all I can think of if you have anymore questions please feel free to ask you can write me at my e0mail to shellyb@vermotnel.net

good luck oh the pain of the implant the first two wasn't bad (sleeping was a little challenge, but when I had to have it done for the screws it was bad, but most people don't have to have that done they aren't clumsy like me
Oh you were wondering about the MRI, I know we can't have one but I had a CT scan done and it had to have a special way to do it so it can be done. you really have to way the pros and cons and worse case senario you can always have it taken out

okay I think that is it good luck
Michelle, wife 2 Burton, mom 2 Nathaniel, Dillan, Gary,Cree Cree, Cardiac,respiatory, & breathing, speech issues.
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