Botox

[thejule1]

My spouse, Larry, has had several Botox treatments. This has helped his spasticity in his left arm, shoulder, hand and inner thigh.

He use to be very fearful of needles but has gotten use to the injections. Like Debbie said, it takes about 7 days for it to kick in and last for 3-4 weeks. We sometimes are able to receive therapy with this to try different things, like the Saeboflex or Bioness for his hand. If your insurance pays, as ours does, it is worth a try.

 

Julie

[numnah]

This is about Botox. I gave up on it after over a year of injections, since I seem to be immune to the drug. Lucky me. I still have very painful spasticity in my toes, so much so that I have to "bite the bullet" just to walk. Does anyone have any solutions? My other limbs are getting better, more loose, and stronger.

After 2 years with a hand therapist, my hand finally opens and closes, and is generally more relaxed, except when I exert myself. I am now trying the Bioness arm thing-y, which opens and closes your hand. The only thing is, it's a pain in the a**s to put on and to have to change the electrode pads and put them into the "gauntlet". It's also very expensive

Sorry. I got sidetracked. The main thing I wanted to know about is a solution to my toe spasticity.

[nancyl]

it wasent worth the pain or the cost ( even with ins footing most of the bill) for dan. nancyl

[maree]

This is an old topic, but I have only just read it so somebody else may just read it after me. i had botox in my calf. I had always enjoyed walking, and always walked briskly and tirelessly, the stroke put an end to that. The botox did help me, a little, but I still had to work like hell to try to recover my style and speed. I can certainly walk further and faster than I used to do, but I still have an obvious limp because strangers who do not know that I have had a stroke, comment on it. I, personally, rarely notice it.

I had my first injections in my calf about 6.5 years after the stroke, then another lot about 5 months after that, with the second lot doing absolutely nothing, though I think that was because the doctor who applied it did not do it properly, he told me that he had used an old muscle stimulator to show him where to place the injections, after I complained about how painful it was

Regardless, the first session was incredible. I remember walking out of the doctors rooms, and thinking WOW how wonderful it felt to walk normally, and that everybody I passed must be looking at me and thinking how well I walked.

As I said, I obviously walk with a limp, but I feel that i walk relatively normally, except when i look critically at myself. And I do know that I am not constantly striking the ground with my heel first because if I do not have well fitting shoes, i will often tend to "walk out" of the shoe. So, unfortunately I have to always wear "sensible" shoes.

If I concentrate I feel that I am walking well, with my heel striking the ground first, but if I do not concentrate, then I probably land on the ball of my foot.

It was really worthwhile having the botox, because I once loved to walk with my partner, I do not find it so enjoyable, now, but, that, really is mostly because of the ongoing fatigue.

My arm and hand were never really tightly contracted, thanks to my mother coming into the hospital every day when I was in the coma and stretching them, manually. A friend who did have severe arm and hand contracture had botox and was thrilled with the results. She was lucky enough to get her treatment under her physicians clinical trial. In Australia, botox is not subsidised, so I paid for my treatments in full. Probably the best money I have spent on a stroke treatment.

[phildogg]

Update: I was billed for about $10,000.00 a year ago in December for Botox treatments. Merry Christmas!

My wife and I both looked at each other and simultaneously and pointed at our behinds indicating what part of our anatomy the insurance company could plant they're lips on. The mixup occurred when the hospital and the insurance company were done arguing, thirty days later, we were out of insurance. At time we were denied in between the time we were approved the time had already elasped. The time of service was the time the insurance company goes by. Needless to say, we got, how shall I say this, fill in your favorite swear word!

I'm eligible for Medicare at the first of May and guess what thing I'm going to get? You guessed it, Botox! I sick of my hand curling up. I'm sick of my stiff shoulder. At the time of service, I didn't think it had an effect on me, minimunally at best. But since I haven't had an injection for about 15 months, I can't wait to get another series of injections. On my government, this time

[nancyl]

i got a 103,0000 bill in the mail once .... that was fun to. did get it taken care of but it is like the insurance people do things on purpose to scare you... actually scratch that i know they do.... nancyl

[1967stingray]

Last summer just after Ray came home, I got a bill for $40,000 for the operation, and then the next day another for $192,000 for his first few days in ICU. At the time, I was crying and couldn't sleep for days, figured we'd lose our home. Then I learned how it worked, last month when they denied $23,000 for 3 days in the hospital after his seizure, I didn't blink an eye. The doctor, and the billing dept at the hospital, told me not to worry about it, Empire always deny everything big initially.

 

Ray coincidentally has his next Botox treatment on May 1, his first day on Medicare, but I just saw that Debbie says she has to pay a $600 co-pay through Medicare? If that is what it is, Ray will have to go without. I will let you know what I find out in the next few days. Up to now, we didn't pay a penny.

[phildogg]

Last summer just after Ray came home, I got a bill for $40,000 for the operation, and then the next day another for $192,000 for his first few days in ICU. At the time, I was crying and couldn't sleep for days, figured we'd lose our home. Then I learned how it worked, last month when they denied $23,000 for 3 days in the hospital after his seizure, I didn't blink an eye. The doctor, and the billing dept at the hospital, told me not to worry about it, Empire always deny everything big initially.

 

Ray coincidentally has his next Botox treatment on May 1, his first day on Medicare, but I just saw that Debbie says she has to pay a $600 co-pay through Medicare? If that is what it is, Ray will have to go without. I will let you know what I find out in the next few days. Up to now, we didn't pay a penny.

 

I read Debbie's post saying they have to pay a deductible. I'm gonna have to look into that. I thought I was gonna be covered once I got on Medicare. Now this? I don't think so. They sent me a letter saying their gonna deduct from my monthly check $99.00 for the stinking premiums. What else can I expect?

[1967stingray]

They initially told me $115 deduction a month from SS for doctors, but now it's $99.90, so a savings. Now that's your premium, and there will also be a deductible for every doctor visit and procedure. For us it looks like $1,132 for hospital total and $162 initially plus a co pay for doctor visits. Nothing for drugs, just $1.10 per prescription, don't know where Botox classification falls. I was crazy today but you can be sure I will find out more before our May 1 Botox appt.

[phildogg]

We'll all learn this Medicare mess together 1967stingray. We'll crack this code before May 1st. Are you on part "D"? That seems inexpensive for prescriptions. I pay 167.00 every three months but I'm looking forward to paying $1.10 per. Currently, I take at least 5 scripts every day. The Baclofen is the most expensive. I'm looking to find a cheaper alternative. Maybe part "D" is the answer. I hope so!

[1967stingray]

It has to be Part D SNP (Special Needs Plan). If they don't give it to you automatically, you have to apply for it. Right now Ray's prescriptions are over $700 a month, so it will be nice to pay under $10 instead.

[Ethyl17]

You have to look at the Medicare manual. Botox is not listed. Once the Doc writes the prescription, the office will contact Medicare and you will find out what your co-pay is. Botox is a drug. It falls under your prescription rider. We have the AARP inexpensive one to cover all the other drugs Bruce is on. I looked up all the ones he MUST take and chose the least expensive plan that covers those. Since he had not received Botox in almost a year, I did not consider that when I chose the Prescription rider.

 

Like most of you, if the co-pay was unreasonable, we would not have done it. And also keep in mind that you can not choose a Prescription rider until you are on Medicare. It kicks the 30 days immediately when you sign up, but Doc's can't give you the Botox expense until you are enrolled. I set up Bruce's appointments at the end of the month he was Medicare eligible so that gave me time to decide on the Prescription rider and get him enrolled. Bruce's Physiatrist is scheduled weeks out and I do not like to wait-lol. Can always cancel.

 

I want you all to realize that Botox is a virus. The body's immune system will eventually recognize it and build immunities against it. It is not a forever solution. Bruce has an incredible immune system and he is still OK on round three-round four, next month. But eventually it will not be as effective and then, it will not work at all. We do it because it allows us time to work on other therapies than can reduce his tone. Bruce can walk. Botox certainly helps. But I pay that co-pay for the arm-hand. Bruce has three braces to help the leg and all three do that. I just once, want to see that arm move! Botox relaxes his Pec, to allow his shoulder-arm to move, but so far nothing and he Estims his shoulder every day.I am not willing to give up and neither is his OT who wants another round of Botox in May and new therapy ordered. After that session, I will have to reconsider. Debbie

[1967stingray]

I told the doctor when he scheduled us that would be Ray's first day on Medicare, but even Medicare themselves said no problem, May 1 you're on us. However, I didn't think of co-pays, since we've been on high deductible up til now so the last one was free. I will put that on my list of phone calls to make in the next week or so, and leave it on my doctor's shoulders to figure out.

 

He did use the minimum dose last time, so all things considered, there should be some still left. Don't know how that works, but the company in Colorado had called me directly to arrange the shipment, so it's not like the doctor has a general stash of Botox laying around for whoever he wants. On the other hand, I recall that the botox was $600 but the injection procedure was over $2,000. I will let you know if I can get an answer in advance.

 

The treatment is great though, it's still working almost 3 months later, even with minimum dose.

[Ethyl17]

Sting: Bruce's Botox is $600.00 but the procedure and the follow up appointment are covered by Medicare, at least for us. Initially I had to take care of the shipment myself as well. Bruce's Insurance at that time would only allow their pharmacy to supply it. I had an 800 number and our own personal pharmacist and they were terrific, but still there is always the fear of a mess up. You never want to give a Nurse an 800 number plus a contact-lol.

 

Bruce does not have a managed Medicare, so we no longer have to deal with that little issue-always something. First go round on Medicare, I got Rx and dealt with my own pharmacy. After that Physiatrist took care of it. Regardless of the co-pay, there has to be some monetary plus for the Pharmacy ordering it and in the case of the Physiatrist, she is ordering for 10 patients. The good thing about that is if there is a mess up, there is Botox there that can be used and Bruce's used to replace that. In effect, their Pharmacy is ordering their own stock, based on the needs of the Physiatrist and then filling the individual orders as needed. If I supply the Botox, that can only be used for Bruce. I have no idea of the shelf life of it. It is basically air and I don't think I personally have ever dealt with that kind of medication. I can only be thankful that this way there is no waste at the prices we are paying.

 

I always think of those who can not afford their medications and the amount we at the SNF are required to destroy, by law. So to see a facility do something about that and actually step up and remedy it in our small world, makes me so happy. Debbie

[phildogg]

Ethyl17,

You know I love you,but.......

I want to correct you, if I may.

Botox is NOT a virus!

It's a bacteria that causes food poisoning. The labs have refined it for injections in various parts of the body. Along the way via Hollywood they found the others effects and uses for Botox. They found it's beneficial for parylizes or weakening of specific muscles that is beneficial for all types of muscular applications. Including us stroke patients. Although Botox is popular among the Hollywood crowd and people could afford it, they discovered it to be true for people with muscle maladies. With great benefit for the majority of stroke patients unless you had a stroke, you don't know how good it feels to be able to move your arm over your head or in some cases, to help you walk again.

I encourage you to continue Bruce's Botox injections. It doesn't hurt for long and besides he'll have a smooth arm. Not a wrinkle can be found, in his arm...

What is Botox?

 

Botox is produced from the bacterium Clostridium botulinum, which is commonly associated with food poisoning. In small, diluted amounts, however, Botox can be injected directly into specific muscles, causing a controlled weakening. It has cosmetic and medical uses.

[Ethyl17]

My bad. Send the nurse back to school! My point was that the body's immune system would eventually recognize it and defend against its properties. Still holds, but thank you for clarifying, does make a difference and people need to get the right information to make a good decision.Good weekend, Debbie

[phildogg]

Thanks for understanding Ethyl17. Can we still be friends?

[beth74]

About 2 months ago I got my first round of Botox injections in my arm, armpit area, fingers, shin, and toes. Yes, very painful. But it sure has been worth it for my spastic muscles. I felt a release of relaxation in my muscles after 3 weeks of the initial injections. It has been easier for me to move my extremities in the water for pool therapy, and in everday living, in general. My insurance pays 80/20. The cost was $3200.00.

[ENZED]

I went to get 12 Botox injections in my right arm (7) and hand (5) yesterday. Hurt like hell, especially my hand. The doctors injected my pectoral muscle too. Anybody have any luck with this type of therapy? I received injections of Botox about four months ago. The doctor told me at the time, I wouldn't be able to come back for at least three months. I was planning on returning until I received a letter from my insurance company questioning the "medical necessity" of the procedure. The doctor went to bat for me and I got a phone call from his office saying I got approved. Thoughts? Comments?

ps. I know this ain't the right forum, but I figured I'm a newbie and I can get away with it.

I received Botox nearly 3 months ago in an attempt to relax the muscles in my left hand, the actual injections occurred in my

upper left forearm, unfortunately it provided a degree of relaxation but not enough for me to overcome clenching my fist instead of opening my hand I am due to go back later this month for a second round at which time they intend to inject my bicep as that muscle

tends to dominate everything I tried to do with my left arm/hand. I believe the medical term for that is "code contraction" or "overflow" in layman's terms. I'll post back after the second round.

BTW: I had to wait 90 days from the first application in order for the insurance company to cover the cost.

TP-ENZED