Saeboflex

[Mema]

My doctor has written an order for me to start the Saeboflex treatment this week. Any suggestions or comments would be appreciated.

He says I am a good candidate for it.

 

Vi

 

[fking]

Vi,

Type saeboflex in the search box, that should bring up the post and replies and your answers may already be discussed in those threads.

 

Tom and a few others have lots of info on the subject.

[tom71]

Vi,

I got involved with the Saebo in Sept. 2005 by attending one of their therapist training classes, where I was very impressed, when I first got to the class I was unable to open my hand,but after being fitted with the Saeboflex I was able to practice their grasp and release exercises,unfortunalely I was not able to get my Saebo until Dec 2005, where I then used it religiously(2xday for 45min),I did this for several months until I had a piece break on the Saebo, which has kept me from using it now for about 2- 3 months,I now have the replacement parts, and as soon as I can get my wife or someone to fix it I'll be back to using it,as for has it helped me,it greatly reduces the tone in my hand while using it,but once I take it off the tone returns,so for now I'd say I'm still in about the same condition as I was before I started it,so you know up front using the Saebo is NOT A "QUICK FIX", but takes a long term commitment for this therapy to do any good,Also so you know, I really believe that this is the best therapy out there,if you think about it logically it is the only therapy out there which has you actively using your hand in its own therapy,(I look at it this way if you are looking to strengthen any muscle you must use that muscle,so if you want to strenghten your legs exercise your legs, if you want to strengthen your hand exercise your hand), most if not all other therapies have you move your affected hand either with our other hand or some type of machine, but the Saebo has you move that hand by its self, sorry to babble on and on, but I really believe in this therapy, even though I'm still in about the same shape as I was before I started.

God Bless,

Tom

[Mema]

Thanks for the info. I am excited about trying something - anything - to get some function back. The tone has lessened quite a bit. I can open my hand and my fingers extend quite well, but I can't move my arm much yet. I'll keep you posted on my progress. Have a good day and may God bless you.

 

Vi

[davnbetty]

Thanks for the info. I am excited about trying something - anything - to get some function back. The tone has lessened quite a bit. I can open my hand and my fingers extend quite well, but I can't move my arm much yet. I'll keep you posted on my progress. Have a good day and may God bless you.

 

Vi

 

 

I think Tom hit it on th head. If, say, a drug comes on the market, we know that it has been tested and proven effective. The standards are not this rigorous for devices. In the case of the Saebo, there is one study with 13 people showing it works. These people ranged from a couple monts to many years post stroke and the device was combined with e-stim...

 

so, we don't know how well or if the device works, or who ezactly it works on. A Tom intimated, any devivce that gets the arm back in the game is probably going to help. However I wouldn't waste your money when there's other stuff that is KNOWN to help spasticity and tone.

[tom71]

davnbetty,You say there are other things proven to work is a bit mis leading, because nothing that you are refering to is proven to work on everyone,and you are refering to the one study,however there are many people out there using the saebo and are getting wonderful results with it, to see some of these people join the saebo yahoo group and read their stories for yourself!

 

 

Ps. Mema the Saeboflex is not a waste of money,but things like e-stim,botox injections ,oral meds have been a waste for me, but if you try the Saebo you'll never have to wonder what if you would have tried it,personally I'm going to try everything possible to regain function in my arm

 

Tom

[door60]

I agree with Tom. My mother was the first on these boards to use Saeboflex, and her results have been fabulous. Is it 100%, No. But It IS SOOOOO much better.

 

Davnbetty, you had mentioned the 13 people study in the past, but I don't know where you got this information from because it isn't at all true. MEDICARE would not pay for a device if it didn't have any merit. MEDICARE paid for 80% of my mother's Saebo, and her MEDIGAP insurance paid for the rest.

 

I hope Mema you try it because I am sure you will get at least some good results. My mother can hold quite a bit in her affected hand, but she still can not use a handrail or banister with her affected hand.

 

Dorrie

[Penny]

One more for Saebo :big_grin: , I use it and have now for a little over a year, I t has reduced my tone quite a bit and my arm and shoulder are much better because of the exercises, the thing is you have to be committed to doing the exercises, today I actually was able to place the balls in my opened hand 90 times without the device on I couldn't physically pick them up but was able to open my hand enough to place the ball in it then I was able to drop it into the crate this is a big :beer: step in the right direction the problem with all of us is that we want imediate results and every one is different Im supposed to meet with the saebo people this summer because they are coming out to Salt Lake, Im anxious to see what they say about my results, So if you get a chnce to try it I say what have you got to lose. take care and good luck Penny

[azrabbit]

Our insurance won't cover the Saeboflex. We just received the notice - cost to us $1690. I really would like to purchase one for Denny, but that is a big hit on the budget. I agree with Tom, anything that helps gain function in the arm and hand are worth it. Denny is a professional photographer, he really needs his hand and arm to hold his camera. We tried tripods and remote shutters, but the type of photography he does makes this solution poor at best.

 

I'll let you know if we buy it...he used one in therapy and also was part of a Saebo clinic. He did real well with it. The other thing he is going to be trying is the hand mentor. He is being screened for a study where they allow you to have a hand mentor at home. You have to commit to using it three hours a day. The screening is tomorrow.

[davnbetty]

Hi. Someone said that insurance wouldn't cover the Saeboflex if only one study supported it. I only wish this was true. However, the fact is that insuranc covers a lot of stroke therapies that have no or very little evidence...aqua therapy, NDT, bracing, kinesiotaping, and so on. With regard to the Saebo, you can do a little fact checking to substantiate my notation:

 

1. Ask the folks at Saebo; they will tell you that studies are "in progress," but will only cite one study that has actually been published. By the way, that study wasn't even good enough to be in a major journal...13 people with a whole bunch of times post stroke and impairment levels got them into a second tier medical journal.

 

2. All stroke survivors should be using Medline (I'm an old veterinarian {a dog plumber} but like to keep up on the human stuff). Medline is the index engine that shows all of the articles in medical journals...it's what the medical community uses to look up articles when they have a question about a specific technique. Type in Saebo or FTM and you'll see no articles showing its efficacy.

 

3. The Saebo people were smart enough to bill this as a durable medical device, which is why it went up in price to $1690. By classifying it as an orthosis, it flies by Medicare.

 

Many of you have slammed the medical community for not providing enough information to you about your diagnosis, drugs you're on, etc...I was certainly *beep* of when they didn't provide this simple courtesy to me and my wife. I'm amazed that people are willing to stand by a company that hasn't done us the simple courtesy of finding out if their device works before going to market.

 

[azrabbit]

I think Davnbetty misunderstood my post. The reason it is not covered by insurance for us is that we have a $5000 deductible for durable medical equipment and we haven't met the deductible. They didn't deny it because of the "single study." I am going to still try and buy it for Denny, because ANYTHING that will motivate him to exercise and work on getting function back is worth it to me.

 

I also learned that Saebo will give those who have to self pay a 20% discount. I met the inventor and several from Saebo, they are all highly skilled therapists AND inventors. They are motivating and encouraging. In my opinion, this board is better served by positive messages. If something didn't work for one person, doesn't mean it won't for another. As we all know, each person responds differently to different treatments / therapies.

[tom71]

Ellen,

I completely agree with you on all of your points, When you use the Saebo the first time and actually see your hand doing something is incredible motivation to continue, also agree John & Henery are great! they actually make therapy fun.I'm glad to hear you are still getting Denny one! in my opinion money well spent!

God bless,

Tom

[Mema]

Hi everyone. I have been busy the past two days and haven't logged in. I have decided to try the Saebo. My husband and caregiver, Misti, are ready to work with me. I will make the appointment next week to have my hand measured. My hand is actually in good shape because I put a splint on it every night so my fingers open straight and I can make a fist. My OT is very pleased with my progress and is very optimistic about my using the Saebo. I'll keep you posted. :Clap-Hands: A side note. I learned yesterday that my 4 year old grandson broke his arm. I feel worse about that than my own situation.

 

Vi

 

[door60]

Really, davnbetty, there isn't one person on these boards who have tried Saeboflex, and weren't impressed even if it was just a little. Studies, shmudies, the Saeboflex certainly can't hurt the user, and if it helps, I say GO FOR IT !!!!!!

Dorrie

[davnbetty]

Really, davnbetty, there isn't one person on these boards who have tried Saeboflex, and weren't impressed even if it was just a little. Studies, shmudies, the Saeboflex certainly can't hurt the user, and if it helps, I say GO FOR IT !!!!!!

Dorrie

 

Qiuite simply, I think that private, for profit companies have an ethical obligation to tell us whether something works, and to do the appropriate research, before bringing something to market. If something works for some of you, that's great; this is certainly the place to discuss it. However, I have encountered many people at my center and on other boards for whom it doesn't work...one couple had to pay $895 for a refitting in NC; another paid $3500 for the device in NC and saw no benefits. Will you hear about these stories? Probably not. Angry people tend to simply walk away whereas happy people tend to sing praises of a product.

 

Someone said that the Saebo folks are very skilled therapists and inventors. I don't know what "skilled" means, as, probably, many of the therapists that folks on this board have bemoaned have been "skilled." For my money, I see a skilled therapist as someone who reads the research and makes my wife better, so I guess I haven't met a skilled therapist. Many of you have residual deficits...were your therapists "skilled?" Does a degree make someone skilled? Years of experience? Many conventional therapies that therapists use do not have evidence to support them but they use them anyways; if they have 20 years of experience and still do this, are they still "skilled?" There are other devices that have actually shown effectiveness in getting rid of spasticity, yet your therapists did not expose you to them, so now you are turning to the Saebo, which doesn't have evidence; were your therapists, then, skilled? I make these points not to downgrade or degrade anyone's improvements...the problem is largely in the standards of the medical community, as well as our own standards as patients and caregivers. (incidentally, does everyone know that the standards for FDA approval of a device are almost non-existent whereas the requirements for a drug are very high?).

 

I am simply very skeptical of a company that puts something out before knowing if it works, how long it works for, or even who exactly to use it on. OK...if they want to sell it to willing people who wish to pay that's fine...but don't charge insurance for it.

 

And lastly, no, my wife did not use the Saebo...she received some Botox (over 100 studies to support it) in the beginning stages, which I understand can be effectively combined with therapy...this approach has evidence, & is supported by insurance...amazing what one can find out on the Internet...

 

I wish everyone the best and hope that my comments will be taken in the informative and purposefully debateful light in wich they're intended. I have dedicated my life now to my wife and to making things better for others who may not have access to the kind of medical information I do through my former life...I don't see how we can make progress in this fight (and it is a fight, as many of you have noted) without alternative viewpoints. that's the purpose of chatting, yes? :chat:

[Penny]

Davnbetty,

 

 

After reading your last memo about the down-side of the saebo-flex. Ican tell that you really care about the people on this forum or you wouldn't write so much about protecting them from a product that you feel is ineffective. The bottom line here is that we are all different and what may work well for someone doesn't necessarily work for another, its all an experiment and those of us who are trying so hard to get better are willing to try anything that may work, its a gamble. I just used my saebo today and I have had mine for over a year now and had high hopes of being able to open my hand at will after using it for 3 to 6 months I think for some it works that way, anyway I have tried botox and unless you have a very skilled physican administer it it doesn't work, I had mine done by a very skilled physiatrist and it did not do for me what the saebo has done. and it cost my insurance company thousands of dollars. I also tried the neuro-move which the insurance company paid for 4 thousand for that ,and that didn't work either, I also tried the hand master, no luck there, all of these things are documented to work, like I said it is all individual. We are all willing to try what may work and unless we try we won't know. What I do know is that in the medical world the saebo company is an infant and until it has been out there for years , it will then have documentation as to its worth, Right? I think you need to give it a chance, its not out there to take us, it works on the principal of the constraint induced therapy method with an aide, now that process has been very well documented to working, I have also done this, my therapist who worked with me was thrilled as to how well my shoulder , arm movement had improved since using the saebo. I hope this gives you a little insight as to the reasons why some of us like using the saebo. Penny :chat:

[cara_a]

Hi all,

I am not a survivor, but a therapist who has been treating survivors for over ten years now. Recently have started the saebo program at my facility. For those who are looking for the theoretical perspective behind it, there are several. First, that it resets the stretch receptors therefore allowing the tone to be reduced. Second, you are teaching graded grasp as well as relaxation of the muscles, something someone who has tone is unable to do, the tone forcing an all or none response. The saebo also allows us as OT's to place something into the hand and make the exercise or activity purposeful and target driven. You wouldn't expect to walk if all you did was exercise your leg lying down, but without the ability to incorporate the hand into the exercise and therefore complete the "circuit ", it is difficult to make the move outside of the synergy patterns. Please don't misunderstand, the saebo is not the end all, I still use the estim, Botox, NDT, PNF, kinesiotape, but for me it is another tool in my tool box. :2cents:

[fking]

Cara,

 

We welcome you as a therapist and your words of wisdom in your profession. You can always add explanations so we understand better what some of these gadgets are doing for some survivors. We do know by our various conditions and brain damage areas, we differ in what will work or not work.

 

Jump right in where ever you like and post your topics or replies, I look forward to reading more from you. Come to the chats too!

[TOM HOLUB]

I've tried both Botox and Saebo with not much in the way of results. Both produced a lessening of the tone in my arm and hand, but i still have no functional use of either. I was told to get off the Botox before i started the Saebo.

 

tTom holub

[cara_a]

Both work in different ways. The Botox actually keeps the muscle from functioning and where the idea is with that is that when the flexor muscles are inhibited, you strengten the extensors. Again, theorectically, when the flexor and extensor strength is balanced, the tone will normalize. In the hand, the problem is a litte more complicated though, as when the tone is normal, your flexors are approx 10x as strong as your extensors. They say that the flexor strength in one finger, again normal tone, is stronger than the extensors of the whole hand. The saebo comes at it from a different perspective. Resetting the stretch receptors, graded grasp, learned relaxation and massed practice. I could see that they would want you off the Botox as you need to use the tone to utilize the device and that with the Botox you wouldn't be getting the learned relaxation. As with anything, you need to decide what works best for you and your lifestyle.