Spinal Cord Stimulator (Implanted Neurostimulator Device) and Spinal Fusion

[DKSABS]

It's been over a decade since the last time I visited Walt Disney World, and I'm so excited to be going again in about 6 weeks. I had Spinal Fusion surgery in early 2013 (ACDF Anterior Cervical Discectomy and Fusion of C5-C6), and I had a Spinal Cord Stimulator device implanted in December 2015 for pain control. I also have Ehlers-Danlos Syndrome (Hypermobility Type), and Dysautonomia/POTS and several other medical conditions.

Is there anyone else in here who has a Spinal Cord Stimulator and/or Cervical Spinal Fusion who can share any advice/tips? I saw a warning that the magic bands could possibly interfere somehow with the implanted neurostimulator device, and was wondering if anyone else who has a spinal cord stimulator has had any problems. My battery pack/internal pulse generator is implanted just above my waist line on the right side of my back, and my lead wires enter my spine at T1 and end around C2. I'm probably going to be wearing my magic band on my right wrist, because I wear my fitbit/watch on my left wrist.

It's been 15 months since the implant surgery, so hopefully my leads have had plenty of time to scar in place really well. I used to love riding all the roller coasters and thrill rides, and am hoping to be able to continue doing so. The device I have implanted is the Medtronic Surescan Adaptive Stim, MRI safe neurostimulator.

I saw one thread where someone who has undergone neck fusion surgery said she was going to wear her hard cervical collar or her soft collar on some of the rides that could cause jerking motions to the neck. I think that wearing the soft collar on the roller coasters sounds like a great idea. If I do put my soft collar on right before getting on the ride, is there a chance that a cast member could say I'm not allowed to ride because of my obvious back/neck problems?

I also saw an old thread somewhere where a person with a spinal cord stimulator said that Primeval Whirl was kind of rough and the person recommended wearing something to protect the internal battery pack. My pain management doctor just gave me a back brace to wear for ~ 1 hour per day to give my back some support while I'm standing and walking. The brace seems like it would be perfect for protecting my implanted spinal cord stimulator - if something does hit me in the back, it would hit the brace that is flat against my back, instead of possibly hitting my internal battery pack on the sharp edge or a corner. If I put my back brace on right before riding Primeval Whirl or other roller coaster rides, is there a chance that a cast member could tell me that I'm not allowed on the ride, because it will be obvious that I have back problems?

Are there any rides that you just absolutely would not ride with a spinal fusion or with an implanted spinal cord stimulator? I would appreciate any tips that you can share. I am definitely renting an ECV from a Disney preferred vendor, because there's no way I could physically handle all the walking and standing in lines all day for 4 days. I am going to visit Guest Services as soon as we get to the first park, and hope to be approved for a DAS based on my other non-mobility related medical issues.

 

[gap2368]

I would talk to your Dr and see what they think you can do as fair as rides, but I would not chance it with roller coaster, I have a friend that can not do them at all know and she loved them she just say that part of my life is over, but her heath comes first. I do not know if a CM would let you on rides if you have a back brace or nick brace on, but if something happens to you on a ride Disney can easily say we had wornings and this person went on any ways, but really why would you want to risk getting hurt and being in pain or the hospital

If you think you need a DAS think about what your needs are that a ECV will not help with. I have heard other people on here say the CM only saw there ECV and would not listen to there other needs ( this has been a few years ago when the DAS first came out). Think of things you can do to help your self in lines. Even if you do get a DAS there will still be lines.

 

[anonymousegirl]

I too wonder if CM's would let you ride wearing a neck collar. That and wearing the back brace would raise some questions and they would probably err to the side of caution (and liability).

Primeval Whirl is so rough that I won't ride it anymore. I use to ride it and would show up all bruised the next day around my hips, thighs, buttocks. FYI, I have a C6-C7 ACDF Anterior Cervical Discectomy Fusion, (1996) and I ride everything, but I do not have the simulator. The one time I avoided all thrill/spinning rides was when I had a bout of Menieres Disease and suffered from severe vertigo.

 

[johnsgrl]

ACDF in 2015, C3-7 and have been to Disney many times since. I did wear my hard collar on the first trip 6 months post surgery but didn't attempt any of the coasters. (I did get some really weird looks on Safari but no one said anything).
The most I have been able to handle ride wise is BTTMR and Splash Mountain. I found EE way to painful and didn't even attempt RNR. I use a TENS and haven't had problems with it interfering with things, but its also not an implant. I am talking to my pain center as they are wanting to go with the newer implants so I would love to hear how your trip went and if it did turn out to be an issue.

 

[DKSABS]

I asked my local pain management Dr last week, and he said I should be OK on most rides, but he probably would skip the old wooden types of roller coasters. He also made the comment that the goal is to let patients enjoy their lives instead of living with lots of restrictions and never being able to have fun any more. I went ahead and sent an email today to my surgeon at UAB who implanted my spinal cord stimulator. This was his reply:

Hi there. I think that you will have minimum risk from riding rides. Just be careful to protect the battery from bumping into a hard seat, etc...- Maybe stuff a sweatshirt in between you and the seat maybe? I have not heard about any interference concerns, but would check with Medtronic. Have fun!

That was a relief to hear! The one ride I've heard the most people talk about being bumped around really roughly is Primeval Whirl. I really would like to experience the ride at least one time before deciding whether or not I ever want to ride it again. Maybe I can duck into the ladies room right before getting in line for that ride, and put the back brace on underneath my clothes instead of on top of my clothes. Will have to try the brace on underneath my shorts and tshirt at home one day to see if I could pull off wearing it under my clothes or not. I do like the idea of wearing the brace for extra protection, especially on that ride.

If you think you need a DAS think about what your needs are that a ECV will not help with. I have heard other people on here say the CM only saw there ECV and would not listen to there other needs ( this has been a few years ago when the DAS first came out). Think of things you can do to help your self in lines. Even if you do get a DAS there will still be lines.

I had heard that too in some of the older threads, and even saw one person recommend hiding your ECV somewhere before approaching Guest Relations so they wouldn't automatically jump to the conclusion that the person's only disability is mobility and stamina related and decide that the ECV is the only accommodation the person needs. I still haven't figured out yet if I should try to hide the ECV and walk into Guest Relations and not mention any of my mobility, fatigue and pain related issues and only focus on my other issues (heart condition, mitral valve prolapse, POTS, Dysautonomia, Primary Immunodeficiency (CVID, requiring me to do weekly infusions of human immune globulin from donor plasma), and IBS-D symptoms related to just having to have surgery a few months ago to have 14" of my colon removed.

ACDF in 2015, C3-7 and have been to Disney many times since. I did wear my hard collar on the first trip 6 months post surgery but didn't attempt any of the coasters. (I did get some really weird looks on Safari but no one said anything).
The most I have been able to handle ride wise is BTTMR and Splash Mountain. I found EE way to painful and didn't even attempt RNR. I use a TENS and haven't had problems with it interfering with things, but its also not an implant. I am talking to my pain center as they are wanting to go with the newer implants so I would love to hear how your trip went and if it did turn out to be an issue.

I'll definitely come back here and report how it went. I used to wear one or two TENS units all day every day at work. One thing I love about the implanted spinal cord stimulator is not having to deal with putting the TENS(s) on my back every day, the skin irritation from the electrode pads, the wires getting caught on everything, causing the electrodes to move suddenly and shock the daylights out of me, etc. And I used to spend a small fortune on 9V batteries to keep the TENs devices running. I had high hopes that the implanted device would take away all of my back/neck pain and the constant, awful muscle spasms across my upper back, neck and shoulders, but that didn't happen. It's difficult for them to program a cervical stimulator to provide paresthesia coverage to that area of the body. I actually feel the tingling more in other places (down my arms, up the side of my neck, etc) instead of across my upper back. But even though the device isn't able to target the tingling to the exact spot where I need it the most, it is still sending a competing signal to my brain that competes with the pain signals, so it does give me some amount of relief. My pain is definitely higher when the device is turned off, so it is definitely contributing to the small amount of pain relief I do get. If you do have the surgery to have a spinal cord stimulator implanted, there's an awesome support group on Facebook that I highly recommend. I've learned a lot from the people in that group.

 

[anonymousegirl]

For me the problem with Primeval Whirl is partly due to the hard plastic molded seats. Not everyone's bottom fits! The seats are meant to reduce sliding and extreme movement, but in reality, if you don't fit, you slightly straddle the edge of the seat and really get bang up as you are sliding around more and bumping on the hard edge.

 

[DKSABS]

That makes sense. I heard that on the thread that discusses whether larger/overweight people would have problems fitting on any of the rides. (referred to as "Pooh sized people" over there, lol). My husband and I are both "Pooh size", so that might be an issue too. People on that thread replied that they did fit on the ride but they got banged up because of how the seats are.

 

[Dashzap]

My son is an incomplete C4 SCI, with internal fixation C3-C6. He doesn't have any stimulation implants, just the rods and screws from the fixation.

His physiatrist said no rides. My son decided to go on the ride in Mexico in Epcot anyway, figuring it is no worse than a car or plane ride. (He is an adult and 6 years post injury, so judgement calls are sometimes called for.) He found the bumping a little uncomfortable.

Next physiatrist visit, I will dig a little deeper as to why she said no rides at all. The day my son arrived at the rehab hospital a few weeks post injury, they were taking all teens with SCI on an outing to Six Flags, so clearly there is room for debate in the medical community on this issue.

 

[DKSABS]

Wow, that doesn't make sense that a rehab center would take a bunch of teens with recent SCI to a place like Six Flags, especially if they aren't allowed to ride any rides. And it doesn't make sense that they would let them ride any of the most fun rides if their injury is recent.

I tried on my back brace underneath one of my looser shirts today and it will fit under the shirt and won't be obvious. It's really scratchy on my skin though and would be really hot to have the brace against my bare skin. So I'll probably need to wear a tank top or camisole under my loose flowy top and put the brace on top of the camisole and under the shirt. I'll go ahead and put the back brace on before getting in line for any of the roller coasters or other jerky rides. Can't really hide the softball neck brace, so I don't know if I'll try to wear the soft cervical collar on the rides or not.

 

[Dashzap]

Wow, that doesn't make sense that a rehab center would take a bunch of teens with recent SCI to a place like Six Flags, especially if they aren't allowed to ride any rides. And it doesn't make sense that they would let them ride any of the most fun rides if their injury is recent.

I was pretty shocked myself. It was a specialty hospital for spinal cord injury and traumatic brain injury. My son opted not to go as he had just arrived and it was his first day trying to drive a power chair.

I imagine they did let them ride rides (why else go). It was my son's physiatrist at home, post-rehab, who said no rides. We went to Universal when Diagon Alley was brand new and added on a few days at WDW.

 

[SueM in MN]

That was a relief to hear! The one ride I've heard the most people talk about being bumped around really roughly is Primeval Whirl.

I would suggest watching for a few minutes and possibly even sending someone whose judgement you trust to ride it first to get an opinion.
It is very rough; it's a roller coaster with a ride car that spins randomly. It's kind of like combining a roller coaster with the teacups and can jerk you around quite a bit.
You also want to consider how a roller coaster stopping might affect you. 7 Dwarfs Mine Train is a pretty smooth roller coaster, but I've seen it multiple times come to a jerking halt. That could be quite painful. We've been on Test Track when it has come to a stop - it's quite a jolt.

I had heard that too in some of the older threads, and even saw one person recommend hiding your ECV somewhere before approaching Guest Relations so they wouldn't automatically jump to the conclusion that the person's only disability is mobility and stamina related and decide that the ECV is the only accommodation the person needs. I still haven't figured out yet if I should try to hide the ECV and walk into Guest Relations and not mention any of my mobility, fatigue and pain related issues and only focus on my other issues (heart condition, mitral valve prolapse, POTS, Dysautonomia, Primary Immunodeficiency (CVID, requiring me to do weekly infusions of human immune globulin from donor plasma), and IBS-D symptoms related to just having to have surgery a few months ago to have 14" of my colon removed.

Many people's needs are met by using an ECV and when the concerns are mobility and/or stamina related, an ECV is a better solution. There are no places to sit in lines and many include a period standing even if the wait is very short.

The list you posted isn't a list of issues; it's a diagnosis/condition list. I am an RN and am familiar with all of those (and, in fact I have mitral valve prolapse with dysautonomia symptoms). Knowing them doesn't tell me anything about the issues you want DAS for.
People with the very same diagnosis can have very different issues and CMs are not medical professionals who understand all the medical jargon.
You need to be able to explain your particular concerns with waiting in the regular lines in plain English. it doesn't have to be long or in depth, but does need to explain why waiting in the regular lines causes issue for you.

 

[DKSABS]

Thank you for the suggestions, SueM. Having my husband ride first sounds like a really smart idea. It will just be the two of us traveling with our 4 year old granddaughter who isn't tall enough to ride this ride, so we're going to have to split up anyways. It really does sound like a lot of fun, but if he says I shouldn't chance it after he's ridden it himself, then I won't chance it. I do have some plans for how to explain what my needs are when requesting the DAS (besides listing my actual medical diagnoses. I'm just hoping they do approve me for it. I appreciate the recommendations.

 

[Branflakes]

I don't have a stimulator. But I have had two ACDF.
2009 C 4-5 successful. Plate, 4 screws.
2014 C5-6-7. Intervertebral cage, plate and 6 more screws. Successful. BUT I live with limited rotation and modest constant and occasionally intense pain.

I go to WDW 2 times a year. I avoid Space mountain, Big Thunder, Primevil Whirl and maybe Dinosaur. The safari CAN be a bumpy ride, I've however been fine.

Pain management is a huge issue for me. I refuse to be a slave to any prescription. I did pt for years. It got boring and useless for me personally. I tried Dry Needling, was told it's the greatest thing this side of Jesus himself. Not so much. I thought I was going to l punch the therapist into the next century it hurt so bad. So not my bag. And I'm not the same since. Major scar tissue as a result.

I take aleve, very occasionally flexeril. And I do a lot of yoga and meditation which has been, for me, monumental in my "living with it recovery".

I'd say it's a safe bet you wouldn't be permitted to ride a roller coaster with a collar. But I'm not 100% certain that is policy at Disney.

You can have a great vacation. No matter what. I've sure been enjoying WDW. But I think you know your limitations and your personal pain and discomfort level. Take it easy and listen to your body. Don't push yourself and then regret it the next day. That would ruin your whole trip!

As for the magic band interfering? I can't imagine that being the case. It's rfid, and very low in radio frequency.