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Hannahgranny
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ACM and Neuro Stimulators
 I have been blessed with ACM w/an empty sella and had decompression surgery in Sept of 1988. In Oct. of 1988 I had a VP shunt put in. I have struggled with increasing symptoms ever since and am now scheduled to have the Neuro Stim implanted next wk. Has anyone ever tried it for the burning, numbing,bla bla bla pain. I realize that it won't get rid of the balance or cognative issues but, figured those would be easier to deal with if I wasn't in so much pain. Walking is getting harder and harder, well some of you know what I mean. I think I have a lot of places to go and people to see and can no longer be bothered with this nasty pain. Oh, by the way....I am just new to this site and am thrilled to find other ACM's that are christians...Bless ya
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8/28/2008, 1:25 am
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horseshadowrider
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Re: ACM and Neuro Stimulators
Hannahgranny! Praise the Lord, glad you finally got here, we've been waitin' for ya!
Well, you really have dealt with this condition a long time! I know you will have a lot of knowledge to share with others here!
I don't have any experience with the stimulator and haven't read much, to be honest. I hope others on here can offer more help.
I sure do relate to the pain while walking. Have you ever been tested for Tethered Cord?
I have/had it, and was detethered last year. I'm still recovering, sad to say, but I would say I am seeing some benefits to the surgery...
What state do you live in Granny?
So glad you found us and joined up. It's gonna be great getting to know you!
hugs
Virginia (in WA state)
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Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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8/28/2008, 1:42 am
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Hannahgranny
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Re: ACM and Neuro Stimulators
Bless ya Virginia............ I live in Michigan................and no, I have not been tested for TC or anything else. In northern MI I was just thankful to find a professional that knew about CM. My surgeon quit practicing..........lol...believe this or not, he is now a plumber...can't stop laughing, oh it hurts... everytime I see a new NS they just look at the MRI and say that the surgery did good...when I ask about all my other symptoms they tell me to go back to my Neuro.. 3 years ago I was rushed to the ER because my employer was afraid I was having a heart attach because my arm went numb and I was clumbsy..the drs. ran some tests and said "its not your heart". When I asked what else they thought it might be, they said " have no idea". It is almost comical the way some Drs. approach symptoms they don't understand....Well, well, well, I think it is time for a little prayer and then off to bed. I actually feel sleepy.. Good night and God Bless 
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8/28/2008, 2:24 am
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GaleB
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Re: ACM and Neuro Stimulators
Hannah Granny, I'd like to extend a hearty welcome to you . We have indeed been waiting for you to make it here.
I am Gale from SC and I have no experience with nero stim, but I had a brief expierence with intra spinal stim. They inserted the elctrodes in my spinal column, up to the thoracic region, then hit something they couldn't pass.
It was a test run at MUSC in Charleston SC. I kept the wires in about 24 hours. I told you brief.  The reason I could not have it, was it affected my breathing , compromised it, severely. Not sure what they ran into. Perhaps a syringe , now that I know what things like that are, thanks to this site and cci site.
I would imagine the brain stim works on the same kind of electrical stim, blocking impulses.
This probably didn't help you a bit, but hopefully, you find help.
I agree our Sister Virginia, more testing may be of tremendous help to you.
All the best in the world and we are so happy you found your way here. !
Gale
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8/28/2008, 6:58 am
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Joleen711
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Re: ACM and Neuro Stimulators
Hi Hannagranny, its nice to finally meet you. Boy, you have been through alot and have had ACM for a long time.
I have done research on the Neurostimulator and I would agree with Gale and Virginia on having some other tests done first. the reason being is that you will not be able to have any sort of MRI done unless you have the stimulator removed surgically first because of the metal. It is usually not recommended for ACM patients at all.
I pray that you will find some other tests that maybe need to be done before this gets put it. My pain Doctor knows about ACM and said that he would not even consider it.
gentle hugs and I am so excited your here.
Hugs from New Mexico, Joleen
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8/28/2008, 6:10 pm
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horseshadowrider
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Re: ACM and Neuro Stimulators
Hannah granny! Hi!
I am wondering if you had the neurostimulator implanted last week and if so, how are you feeling? I pray you are doing well with it! I'd like to learn more about it so any information you can give me, I'd so appreciate it!
Most of all, we want to hear from YOU and see how you are doing??
love and hugs
Virginia
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Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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9/2/2008, 8:01 pm
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Hannahgranny
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Re: ACM and Neuro Stimulators
Greetings and God Bless Virginia... I just arrived home after staying 2 wks with my sister since she lives closer to the Dr. I have been seeing. I would have to be honest and say that both surgery were awful. First they put a trial in and then if it works you go back and get a perm one. Because I needed one of the leads to go ocipital it was hard to find a dr. most don't want to go above thorasic. Anyway I was very leary but have tried so many other things I figured why not. The first surgery was a big failure because when I had decompression the scar tissue moved a muscle where it should not have been. They got worked out and last Thurs I had the perm one put it. I am very sore with railroad tracks everywhere. But guess what?????? NO MORE PAIN...............
The entire left side of my face druped also and my left eye was almost closed. Wide open now. Although this will not correct all the other stuff that goes with CM, ie: balance, memory, incontence, some small motor skills, etc. I am thrilled because I ahve always believed that without so much pain, the other stuff I have been blessed with will be easier to deal with. If you do consider this find a Dr. that has experience with cervical and has good results. Good Luck to you and God Bless
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9/13/2008, 3:00 pm
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GaleB
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Re: ACM and Neuro Stimulators
Hey that is wonderful news Hannahgranny! Praise God for this blessing for you.
I hope , your life is so very much better because of this relief. Oh we welcome such great news!
Gale
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9/13/2008, 9:22 pm
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Hannahgranny
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Re: ACM and Neuro Stimulators
As I had posted before the neuro stim is working great for the pain. Funny thing though, i have a new and very unwelcomed symptom. I used to be a little incontient but with a little protection everything was under control. well now, niagra falls. I barely feel the urge and on my way to the washroom or even just getting up from a chair and everything lets go. I am going through depends like 15 a day. What do you think? I am wondering of the NS missed something before he gave the go ahead for the stim. Any ideas welcomed................
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9/16/2008, 11:55 am
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GaleB
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Re: ACM and Neuro Stimulators
Hi Hannahgranny,
It would be guess that possibly the stim is also blocking the *sensation* that you have to go. The stimulator blocks the nerve impulses that stimulate the pain receptors. It also maybe blocking the nerve receptor to the little muscles that hold urine in until you have to go.
I believe it maybe stim related. do discuss with you nurse or physician, on this issue.
I am not sure what part of your spine this is affecting or which nerves.You may could even have an adjustment with the impulses the box is sending to turn it down just a little or something like that.
This is purely trying to think it through.
DO put a call into your Dr and ask the one who should know for sure.
Let us kow ok? Best of luck !
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9/16/2008, 12:30 pm
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