After a great deal of time I have come the decision, that my only option; is to recieve a spinal stimulator. I'm due to have a trial placement on 10/11, that will be placed 3-5 days.......Nothing has worked for me thus far - re/pain management. I've tried & researched every known option that I could find. I'd like opinions & inputs re/the stimulator :0)
Hi....
Sorry, no experience with spinal stimulator.....Hopefully someone here has some experience they can share with you.
Let me know how it goes..good luck!!
Peace,
Lori
Hello,
What is the spinal stimulator do...I'm going to take it literally...an object to stimulate the spine?
Hi there!
I had my spinal cord stimulator implanted in November 2010, approx. 6 months before I was diagnosed with Chiari and Craniocervical Instibility and EDS. I have had issues following a car accident for almost 4 years now and after seeing a great deal of specialists and being hospitalized in numerous facilities in the country, all we knew was that I had a brain injury and severe chronic pain that had been treated by my pain management doc. I had everything done from 8 sets of injections, to 4 sets of rhizotimies(sp) the burning of the nerves and much more. My doc finally decided that the only option left was to implant the stimulator. I did the trial for about 5 days and we decided to go through with the permanant implantation in Nov 2010. (remember, this was before I had ANY idea about my Chiari and other combined conditions cuz i had been misdiagnosed for years, like many Chiarians.)
There are a few things i need to know about you in order to give you advice about the stimulator.
1. Do you have a diagnoses of Chiari Malformation or other related disorders?? (EDS, Craniocervical Instibility?)
2. If so, have you been treated for these conditions?
If you have not had a diagnoses yet, there is one very important thing i need to mention! ONCE YOU HAVE A SPINAL CORD STIMULATOR IMPLANTED, YOU CAN NO LONGER RECEIVE AN MRI FOR ANY REASON!!! Including to diagnose or deal with Chiari! I find this very important because while the stimulator may help with your pain, you are only treating a SYMPTOM, not a CAUSE(which could be Chiari etc.) Please let me know what your status is regarding your Chiari and any surgeries because I am going to bet that I might be the only one on here WHO HAS HAD AN SCS SYSTEM IMPLANTED, who has Chiari and who is now 8 weeks post op from 2 brain surgeries from the chiari. and i would like to help you as much as possible!
Let me know and I will share as much info with you as i can, and give you the best advice that i can as someone who has gone through this.
Well Wishes!
Marisa
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Also, please feel free to ask any questions regarding the stimulator and I will do my best to share my knowledge and experience!
Hope you have a pain free day! :)
I do have the diagnoses of Chiari Malformation I, EDS, CraniocervicalInstability. I was diagnosed back in 1988 w/the Chiari & the other diagnosis came later i 2005 where I was seen at the Chiari Institute in NY. My symptoms for which the SCS SYSTEM is suppose to be placed is; bilateral leg pain that just started back in Oct of 2010. I have seen by 2 Orthopedic docs, a ruemetologist doc, my neurologist, 2 spine specialists, 2 pain management docs & had Dr. Tew review my records. I have not had any satisfactory answers for why I'm having the bilateral leg pain. One spine doc said it wasn't a spine issue, the other spine doc says it's a normal degenerative issue in my lumbar for someone my age & that I'm not a surgical candidate & I just need to increase my Cardio exercise, my rumetologist thinks it's fibromyalgia, the orthopedics say that it's not a bone issue, my nuero along w/1 pain management doc says it's a possible central nerve syndrome due to the Chiari, & last but not least the pain-management doc that I originally saw, states that it is due to the spine herniation in the lumbar that are pressing on nerves. No meds will work for me & they say that the SCS system is my last option. I am schedule to see a Genesis regarding the EDS in March. I have been very apprehensive about the SCS SYSTEM, mainly because of the Chiari. They have told me that I would be receiving the Medtronic SYSTEM, which you can still have an MRI with.
Hey there!
Checkin in to see how the trial placement of the leads is going so far for you?? Any relief you've noticed yet? Keep in mind during the next few days you may have to keep being reprogramed to find the right settings for you, so that is expected. Sorry i did not get back to you sooner. Sounds like you've got a lot of different opinions from different docs. There is one very important piece of information about the SCS, it only works on NERVE pain. That is why it is called a Neurostimulation device. It interupts the nerve pain signal from reaching the brain and replaces it with stimulation. Sounds like two of the docs said to you that they think it is nerve pain, which is why they would reccomend the SCS. This is not the kind of device that would elieviate pain from a herniation or other joint pain etc. So i am very curious to see how the next few days go for you! Please keep in touch during your trial period and let me know how it is going. And also feel free to ask me any questions you might have! I would love to be able to assist you in this process.
Marisa :)
P.S Also keep in mind that since your Chiari surgery was performed quite a while back and things have obviously changed and progressed in the knowledge and technology since then, that you may just be needing revisions to your prior surgery. This could be causing your pain as well. Just keep that in mind. Because while I am all for the SCS for helping pain, in the majority of cases (especially those with Chiari involved) the SCS is only treating a symptom, not the CAUSE of the pain. If you catch my drift. So that is another possibility! (I mention this, because that was the case with me)
Anyways keep me updated please! And best of luck! :)
IVe been jumping thru hoops for at least 3-5 months trying to get an Occipital Nerve Stimulator placed for a 7 day trial. if the insurance company ever approves it that is. so far ive had to see another pain specialist because mine doesnt place them,and he ordered CT scans,added meds but as far as presenting the stimulator to the insurance for approval he never did. So my pain clinic doc got aggravated and told me not to go backthat he would do it himself .then i reminded him he told me he had never done one and he said hed be there burt he knew another doc nearby who would actually do the procedure. so Monday i had to see the psychologist at the pain clinic for an interview to see if im a good candidate for a permamnent implant. he said I was BUT i have to go back and take a written test ARGHHHH im about ready to tell them just to forget it but if it would actually work id love it...if u get yours placed please let me in on details and how u feel because the way this whole process has been going im not holding my breath until mine is placed...Good Luck n keep in touch please!
Hi Mary,
I'm sorry for all the trouble you've been going through with this process. Its so frustrating!
I do want to mention that an Occipital Nerve Stimulator is not the same as an SCS system(SCS is a spinal cord stimulator) which places leads in the spinal canal connected to a box placed in usually your lower back or stomach which is the battery pack. It is for pain in the back and or legs and possibly arms. It is NOT to treat head pain or migranes.
From what I understand, the Occipital Nerve Stimulator is to treat headaches or migranes. So I just wanted to mention that it is different from the SCS system that I have implanted and that "Mikidoodle" is having implanted.
I wish the best for you in trying to get this done! It can be such a long road, I understand. But keep your head up! I'll be saying prayers for you!
Best of luck!
Marisa
hi Marissa,
The ONS is implanted with electrodes on both sides of the back of my head. the control box will be implanted somewhere near or under my shoulder blade. It is supposed to stimulate the occipital nerves therefore blocking the pain impulses in my head.so it works basically the same as a SCS just in a different area. i still have to take a written psychology test before the doc can submit the idea to my insurance company. had an one hour interview with the psychologist at the pain clilic n he said he didnt find any reason that we couldnt move forward but then he threw that 1 1/2 hour written test atme so I have to go back yet again tomorrow for that. *sigh* so its hurry up n wait some more!
thanks for responding and thank u for the prayers!
Hi Mary,
I'm sorry for all the trouble you've been going through with this process. Its so frustrating!
I do want to mention that an Occipital Nerve Stimulator is not the same as an SCS system(SCS is a spinal cord stimulator) which places leads in the spinal canal connected to a box placed in usually your lower back or stomach which is the battery pack. It is for pain in the back and or legs and possibly arms. It is NOT to treat head pain or migranes.
From what I understand, the Occipital Nerve Stimulator is to treat headaches or migranes. So I just wanted to mention that it is different from the SCS system that I have implanted and that "Mikidoodle" is having implanted.
I wish the best for you in trying to get this done! It can be such a long road, I understand. But keep your head up! I'll be saying prayers for you!
Best of luck!
Marisa
Hi everyone
I am moving forward for a trial of SCS. I have my psyc eval next week and hope to get the trial done by end of February. Can you give me a general idea if you feel SCS has been helpful to you? It seems like the last few years the technology has improved. I know everyone has different issues and the unit will be tailored to my pain needs.
I have chiari 1, been decompressed 2x along with 2 cervical fusions. After my last fusion I woke up with Horners Syndrome (Jan 2016). Ive struggled with occipital headaches for years, but they are manageable with OTC and rest. Add in the Horners and now I have orbital migraines that make a chiari headache look like chump change. I have done the usual PT, injections, RFA, etc. This seems to be my last thing to try this isnt prescription meds that my body cant handle long term.
It seems my reasearch online gives lots of info for lumbar SCS and very little cervical info. This is the only place i have found anyone with Chiari talking about treatments.
I have a stimulator. My story is not so neat and dry because the Cleveland clinic put it in the wrong spot the first time and then I had them wake me up during the surgery to tell them where to put it. But it is all because I have had decompression brain surgery from Chiari Malformation. I’m missing 1 1/2 vertebra and 3 in diameter of skull. I was also the fist person to get the new paddle lead they have. Although with my narrow corridor back there it didn’t fit. So I’m all kinds of special and now have a couple cords running down my back. I also had my spinal cord blow out when my brain fell and cause a bubble or syrinx on my cord. Thus causing RSD/CRSD in my rt arm. That has now spread to my leg. Now with u knowing my history. I want to say that my stimulator is great for a different feeling. I helps me not go out of my mind because of the constant pain I’m in. It’s like a "Okay, I’m over feeling this feeling 24/7, can I get a different feeling please " mine is all the way up to my neck and my neck has been cut open 3 times, so I do get muscle tension sometimes. I have some other issues with shaking profusely with my stimulator on. BUT THIS IS NOT EVER COMMON. I’M JUST ALL KINDS OF MESSED UP SWEETIE. LOL I hope this information helps you and feel free to ask any other questions you may have.
Thanks for your input. I’ve been decompressed 2x and my chiari is 16mm. I like how you describe the sensation of your unit. I think that would be a welcomed feeling versus headaches and whatnot. My research has taken me to a newer type of SCS from StimWave. It’s wireless and the battery is not implanted within the body. (Go to www.stimwave.com) I have contacted their Ohio rep and it sounds like this may be a good fit for my trial.
What is RSD/CRSD? Is your muscle tension due to that? I hope you’re having a good week ad far as symptoms are concerned. Thanks again for sharing.
Hi MamaC
Thanks for your response about the SCS. I go Monday to talk to the PM doctor to review my psyc eval. After reading your post I spent some time thinking of my symptom progression over the past 3 years. I decided to reach out to the Chiari clinic at Mayfield in Cincinnati, OH. My last decompression was there and they have my Cine MRI, and other tests on file. Im going to request a new round of scans and a consult before taking the trial. I guess long story short…you reminded me that we have to be our own advocate for our medical care.
Have a great weekend.
Diane K