Columns The MS Wire - A Column by Ed Tobias Thinking About Quitting My Bioness L300 Thinking About Quitting My Bioness L300 by Ed Tobias | December 18, 2018 Share this article: Share article via email Copy article link The Bioness L300 Go. (Photo by Ed Tobias) The L300, made by Bioness, is a functional electronic stimulator. It’s a cuff that I wear just below my left knee. It stimulates a nerve that lifts my foot and helps keep it from dragging. When I first got my L300 in 2012, it was a blessing. But now it’s more of an annoyance. Back then, the L300 allowed me to walk up and down a grassy slope using just a single cane. I didn’t have to swing my left leg in an arc while I walked. It increased my walking distance and my speed. Now, more than six years later, I’m using two canes. My overall walking distance and speed have decreased and that grassy slope is nearly impossible, even with two canes and the L300. To put it simply, I’m not getting the bang for the buck that I once got from the cuff. And frankly, it’s a nuisance to strap on and uncomfortable to wear for more than a few hours. Would an L300 Go be better? The L300 Go.(Photo by Ed Tobias) Bioness has replaced the L300 with a newer model, the L300 Go. The new unit has several improvements. It has what Bioness calls “3-D motion detection,” and it doesn’t require a sensor in the user’s shoe. Bioness allowed me to test-walk the L300 Go for about an hour in a clinic before it became available to the public. Frankly, I didn’t think it made enough of a difference to my walking to justify shelling out over $6,000 to buy one; my commercial insurance didn’t cover my current unit and I don’t think Medicare will cover a replacement. But there’s a problem with failing to upgrade. The older unit is being phased out. When I tested the Go, a Bioness representative told me that the company intends to support the original L300 for “at least the next three years.” So, the clock is ticking. And customer service at Bioness isn’t what it used to be. Just two months ago, a reader commented: “I tried for nearly a month to get the upgrade price information. And never received a return call. That was nearly a year ago. Just today, I received an email saying ‘the L300 Go upgrade program is set to expire on October 31st. Act now to take advantage of this offer. Upgrading is as easy as 1, 2, 3.’ So I decided to give it another shot and call. I guess I’m a glutton for punishment. Of course, I couldn’t get through to a rep. Maybe I’ll get an answer before 2020.” Shortly after this comment was written I, too, tried to reach Bioness to ask about the cost of an upgrade. An email asking about price and trade-in possibility and to be put in touch with a public relations representative went unanswered. (This is a change from earlier years when they were always responsive when I contacted them.) I have little confidence that my L300 will continue to be supported much longer, especially if I need a repair or a replacement for part of the system. Can I live without it? For the past two days, I’ve tried going without my L300. This experiment began because I woke up feeling better than usual. Hauling out a pair of shoes that gave me decent support, I found that I seemed to be walking just as well without the L300 as with it. And I did all day, though a tad slower. The second day wasn’t as good. I was more tired than usual, and I spent several hours in a car. The result was that I was stiff and slow. Expecting that I’d have a tough day, I’d strapped on the L300 just in case I felt the need for it. And I needed it. I’m glad that I had it. So, I’m back to square one. The answer to “Can I give it up?” is “Probably not.” At least, not yet. I’d better start saving for a new one. You’re invited to follow my personal blog at www.themswire.com. *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun. Tags Bioness, Bioness L300 Go Comments eddie rivera Shame on them. This is the treatment we get after purchasing these items. Good luck. God bless.. Reply Dave Pitchford I had a similar experience with the Walkaide device. Very helpful for about a year or so, then gradually saw a decreased response due to gait changes. I went from just using the Walkaide, to adding a cane, to adding dual walking sticks. Gave up on the device and focused more on re-establishing a normal as possible gait. Ended up with hip flexor weakness being identified as the major issue. Foot drop was my presenting symptom , but I think hip flexor weakness and spasticity are my major issues with walking. Slow and steady is now my mantra. Best of luck to you! Reply Ed Tobias Thanks for sharing that info, Dave. I think your focus on improving your gait without an electronic aid is a good one and I wish you well. Ed Reply Brian Schoening Becker Orthopedic has a hip flexor assist device that was a blessing to me. Reply Daryl TERRIBLE CUSTOMER SERVICE, GREAT ladies in our area to fit unit, I have a new pro after getting rid of my older L300, you are completely correct when you say customer service is not near as good ,I started to have had a problem with my calf cuff it only works on 1/2 of the cuff and of course they say this can't happen but I have worked on electronics for a while there is a reason computer makers sell new computers they break, I'm not wearing it and haven't since about 4 months after I purchased it, I sure wish they had the quality customer service personnel as a few years ago, ps: there's no since in calling the GM over the USA he is no help you might as well go see a Walmart greeter Reply Cesar Hi Ed, maybe is time to try something different. I am using the smart brace from Insightful Products. It is working just fine Reply Ed Tobias Thanks for the suggestion, Cesar. I've used an AFO and, for me, the Bioness has been better. Ed Reply Dan I've been using a WalkAide for the past few years, but unfortunately, my hip and knee flexion have been getting progressively worse, so it throws off the accuracy/reliability of the device. I started using this newish orthotic, which has been a lifesaver: https://turbomedorthotics.com/en/products/turbomed-xtern-external-ankle-foot-orthosis Reply Ed Tobias Thanks for this, Dan. I used an AFO before I went to the Bioness and the Bioness was better. But I'll have a look at this product. Ed Reply Diane I have had two AFOs, useless, Bioness expensive and at times a real pain to use to find the right spot (older model) - now I use Elevate drop foot device by Foot scientific, so much better for me personally due to ease of use, you can use in almost any shoe, it works and takes 30 seconds to get it on and only $150.00. Reply Ed Tobias Thanks, Diane. You're certainly right about a pain to find the right spot. I'll check out the Elevate. Reply Becky Johnson The new quick fit electrodes make placement much easier. I switched to these when I had my old L300 units bilaterally and it made the fit much easier! You might try getting these instead! I am also using these on my new Bioness Go units and it makes placement easy! Reply Becky Johnson I wore the original L300 units for 5 years before upgrading to the L300 Go system. The cost of the upgrade was 8500 and you are so right when you say customer service is NOT what it used to be! Fortunately I was familiar enough with adjusting the units myself by this time! Insurance once again did not cover a dime! I was fortunate to have friends that had seen the benefits for me and raised the needed funds for the upgrade! It's the only way it would have been possible! The new units are much more comfortable to wear. They have a vibration setting that gives you a little buzz before the stimulation starts and I've found it to be much more comfortable!! The new GO units with the quick fit electrodes I can now wear for 10 to 12 hours at a time. The old L300 I was lucky to wear for 6 to 8 with a 1 hour break in the middle. It's a plus with the GO system that I can wear it without the heel sensors or the controls around my neck. I have better balance on multiple surfaces thanks to the GPS and can walk without shoes which has made me more compliant in using it. I also have less spasticity the more I wear the devices. I use a Trionic walker these days since a bad fall in 2016 (when I was NOT wearing the Bioness) when I am outdoors and a cane or poles when I'm in the house. I'm thankful for the Bioness Go system and it's impact on my quality of life with MS. With the new GO units, I've even been able to climb stairs on a limited basis for the first time in years. I am sorry they have not been more responsive to their customers. I also can wait many days also before getting a return call. I actually had to wait a month and a half after purchasing the devices before someone could fit them for me! I hope in the future insurance coverage will be a reality! I also hope customer service improves! If you DO get a chance to test the GO system ED I would say give it a GO!! I was really amazed at the improvements and after 9 months, I can't imagine life without my Bioness GO!! Reply Ed Tobias Hi Becky, Thanks for the detailed info. I might have been able to be as detailed, and maybe as positive, in my review of the Go long ago if I'd been able to test the unit for more than an hour and to do it outside of a clinical setting. Ironically, the day this column was published I received an email from Bioness encouraging me to upgrade. It asked me to allow them to get an Rx from my neuro so that they could get pre-approval from my insurance company. I responded by asking them if they were aware of anyone with MS getting approval from Medicare. I'm sure everyone will be interested in their response. Stay tuned! Ed Reply Becky Johnson Thanks Ed for your response! I will be following closely to see if you get approval from Medicare. It didn't happen for me on private BC/BS insurance OR Medicare. I do hope that can change! It is unfortunate the Bioness GO cannot be trialed outside the clinical area. It's like trying to buy a car they won't let you drive out of the parking lot. When I tried out my first L300 unit in 2013, a Bioness representative who was a physical therapist actually came to my house so I could trial it in my home environment. I had 2 months to basically "rent it" until I decided whether or not I wanted to purchase it. It would be awesome if that could happen for people today with the Bioness GO. Maybe once this gets posted you will get another email from Bioness. LOL!! I guess that's one way to get their attention. I've also have been unable to get the NEW Bioness GO application for Apple phones to work successfully. I actually switched recently from an Android to an Apple phone so I could use the app. It allows you to adjust some settings on the device and also functions as a pedometer and goal setter. I was looking forward to using it, but after an hour on the phone with an IT tech from Bioness (when I finally got to talk with one after several days) I could only get it to work for 1 day before it quit again. I think it could be a valuable tracker if I can ever get it to work! I decided to wait until after Christmas to try calling again. I hope you are successful in your quest to really try out the GO system! One of my favorite things about the new system is it basically "goes to sleep" when I am sitting down. The old L300 units would leave my feet in spasms once I sat down and I always had to turn them off and back on. Overall, the GO system has made a bigger difference for me in waking up muscle memory and in day to day mobility. I think you would be amazed at the upgrades after your experience with the L300. I hope Bioness lets you take one for a true test drive soon! Make sure you get the chance to walk around some in your bare feet! It's a big plus!! My PT noted just yesterday how much stronger the muscles in my feet are this December compared to last year and that has greatly improved my balance! Love walking in my bare feet around the house! Thanks for you patience with my LONG reply! Cheers for the New Year!! Becky Reply Ed Tobias Hi Becky, Thanks for all of that info. I'm really glad that the Go is helping to improve you, physically, as well as assisting you. Interestingly, I had a phone call this morning from a Bioness rep. He told me that Medicare approval is "still pretty rare." Apparently, the chances improves slightly if you have a Medicare Advantage plan but I'm traditional Medicare. Like you, when I bought my L300 I was able to rent it for a month or two before deciding whether to buy it. Though they no longer offer that program the rep told me that they will allow you to return a unit during the first 30 days for a refund, minus a $595 re-stocking fee. I think that's about the same as renting it for a month. BTW, I've found a trick that allows me to put my L300 to sleep when I'm sitting. If I allow the unit to pulse and raise my foot, and I hold the foot in the flexed position while the unit continues to pulse, it'll turn itself off. It resumes normal operation when I get up and walk again. Happy holidays and best to you for the new year. Ed Reply Mary Hello and thank you for posting such valuable information for those of us that are still "learning" how to navigate the world of MS! I purchased the Bioness L300 GO in July of 2019. I have to admit, I am not consistent in wearing it because I never seem to get it in the exact place for me. At this time I truly regret spending the money on this device. I would love any tips you might have for me to see if I can't get this to work better for me. I would REALLY love to be happy about this purchase and REALLY want it to work! A bit challenging since the rep does not live in the city that I do and only comes in town once a month. Thanks again for the great info you provide to so many! Ed Tobias Hi Mary, I was fitted with Go today and the PT spent an hour tweaking is. It works a bit differently from my old unit so it's taking some getting used to, but I think it will be an improvement. I use the hydro gel electrodes. That makes placement on my leg very important but I think the gel electrodes make the best contact with the leg. I do a few things to help the cuff work as best it can. First, make sure that my leg is clean. If I've just been in the shower I sit on the toilet and wash the leg with clean water to make sure there are no soap oils interfering with the electrode/leg contact. Sometimes I cut the hair on my leg in that area. (Bioness suggests using a scissor but I use my razor). When I put the unit on I put it into teaching mode and re-position it if it doesn't give me the right amount of boost. The electrodes need to be relatively fresh, but I can usually get a set to last a month. A couple of drops of water on each, when they begin to dry, will help their connectivity and extend their life span. It's possible that your cuff may need to be adjusted better. Not only can the power be boosted, the length of time the electric pulse lasts can be increased or decreased. There's also an adjustment for how quickly the pulse appears...slowly or very quickly. I wouldn't be shy about telling the Bioness PT that you're unhappy with your purchase and getting him or her to keep adjusting it until you are. As you write, it's a lot of money for something you don't want to use. Good luck, Ed Becky Johnson Thanks Ed for that informative tip on quieting the L300 for those still using the original units. I never figured that out! LOL!! I just thought I would share one more PLUS I have found with the new GO system with you. I am able to use the units when I ride my recumbent exercise bike and on the elliptical trainer. It helps me get my heart-rate up and I get a much better workout. I think it has to do with the GPS positioning. Also, with the GO system I'm able to climb stairs, slowly but surely! I lean forward slightly to activate the device as I'm going up and it lifts my foot. I has allowed me to reach destinations I haven't been able to visit for at least 5 years! I was able to tour a historic house with multiple stairs and no elevator with these GO units. I plan to keep pushing the boundaries with this new technology in 2019! Happy New Year Ed! Hoping 2019 is known as the year of the CURE for MS! Reply Ed Tobias That's great, Becky. I'm able to ride a recumbent bike for a short time without the L300. I'd love to see the difference if I get to try an L300 Go again. Ed Reply Becky Johnson Just checking in Ed to see if you ever got a chance to try the Bioness Go device. I just had my one year appointment with my neurologist after having the Go device for one year. My balance has improved, the strength in my feet and toes is better and I have less atrophy of the muscles in my legs. I am actually able to climb stairs regularly hanging on to a rail which I wasn't able to do with the old devices. This is without the thigh unit which has never seemed to work for me when I tried it out so I just have the lower leg units. I would love to hear that Medicare covers these devices! Even if they covered the electrodes it would help! I'm anxious to hear if you've had any luck with coverage and I do hope you try these out again soon Ed! :) Becky Reply Ed Tobias Hi Becky, Good to hear from you again. No, I never did try the Go again. Actually, the need to move the heel sensor from shoe to shoe with the original L300 has pushed me in the opposite direction. I've begun using the unit less than I used to and I've found that I'm able to walk fairly well without it. So, at least for now, I'm holding onto my cash and putting it towards a Disney cruise with our grandkids. :-). Ed Reply Becky Johnson That sounds like great place to put your money Ed! Making memories with the grandkids is priceless! I'm glad to hear you are doing well without it! Reply Alex Mariñelarena I see you have the stiffness issue. I do as well, however my neurologist prescribed me with Baclofen and damn it helps a lot. If you’re not into it yet, ask your doctor, you won’t regret. Also, in regards of mobility improvement, there’s a new treatment discovered by a neuro-scientist in Mexico. I took it, and it really improved my life Reply Ed Tobias Hi Alex, Thanks for the suggestion. I've used Baclofen for years, but only to calm my jumpy legs in bed at night. It never did much for me during the daytime. What's the new treatment that you mention? Ed Reply Joy Hi Alex what is the treatment? I go in for a bioness evaluation tomorrow. I too use Baclofen at night and it has helped me sleep as long as I take it 2 along with a Neurontin. I have a rx for Tizanidine but I have not taking it out of fear of hallucinations. My dr I was Reply Viviane Wat fijn om deze info te lezen. Ik gebruik al 10 jaar de L300 (kan hem niet meer missen) en overweeg om op termijn over te schakelen naar de L300 go. Deze reacties geven me al een idee wat ik kan verwachten. Nu nog uitzoeken waar ik in België terecht kan en vooral nagaan of er een tegemoetkoming mogelijk is (vrees ik voor) GOOGLE TRANSLATION: How nice to read this info. I have been using the L300 for 10 years (I can't do without it anymore) and am considering switching to the L300 go over time. These reactions already give me an idea of what to expect. Now I have to figure out where I can go in Belgium and especially check whether an allowance is possible (I fear) Reply Richard Gayton Thanks so much for this blog. I have not found discussion of Bioness anywhere else. I got the L300 lower leg and upper leg cuff about three months ago. Medicare did not cover it, but the Veterans Administration paid for them both! I did not think I needed both cuffs but the Veterans PT and a private PT and the rep said I walked much better with both and I have found that to be the case these past few months. I definitely walk with more normal gait and with much less fatigue. I too have found electrode placement tricky for the lower cuff and have met a few times with the rep to find the spot again and adjust the step pulse. I finally used a Henna temporary tattoo to mark the spot. A tube of Henna is cheap on the internet and the mark lasts about two weeks. My foot now moves more normally. I use the L300 about 4 hours a day, but I am getting foot pain. I suspect this is because I am using muscles that have atrophied from lack of use but not sure, so I will meet again with the rep again. As I use the upper cuff for more hours I sometimes get a small abrasion or skin reaction on my inner thigh only. I use the device for fewer hours the next day or give it a break for a day and the skin issue goes away. This device has great potential yet it requires meeting frequently with the rep at first to keep adjusting it and teaching me to find the right spot for placement. I of course wanted a miracle cure for foot drop and hip flexor weakness. This is not that, but it certainly has made me much more mobile for a longer time with less fatigue. Reply Ed Tobias Hi Richard, I really appreciate your sharing your experience with the Bioness units. As you might have noticed, my column was written a couple of years ago. Since then the cuff has been less and less useful to me. I think it's past time for a tune-up, if Bioness will still provide this at no cost to me. I've tried the upper leg cuff but it didn't do much for me. I've considered trying it again because my hip flexor seems to have weakened but I've resisted that because of the cost. But, as with you, the cuff has helped correct my foot drop and it still does. It's still better than nothing. Ed Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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