Botox injections to treat spasticity.

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old dog

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I have just been referred to an ENT doctor to be evaluated for botox injections in the larynx to improve speech. If he thinks I am a viable candidate, I will get the injection the same day--April 5th. This doctor has had success with treating spastic paraplegia patients with botox but has not tried injecting the larynx of PLS/ALS patients because it may enhance swallowing problems. Even though my speech is terrible, I apparently am being considered because I am still able to eat anything I want and can still swallow large pills. Although the procedure is not without some risk, I'm looking forward to being the first person in this area with PLS to give it a try.
 

John1

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I look forward to hearing your results. Good luck.
 

old dog

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Darn - ENT doctor's office informed me that my insurance company will not approve botox injections for speech improvement. I'm not surprised but hoped the doctor could come up with a justification for the procedure, as the insurance co. told me these requests are decided on an individual case basis. The person who gave me this news said not to give up hope. Following an exam, the ENT doctor will be able to supply the insurance co. with more specifics concerning my condition which may lead to approval of the treatment. Another case of wait, wait, wait.
 

mookyred

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My son-in-law has MS and is on baclofen pump. He had his first injection. He had some improvement. That is all I can tell you at this time.
 

TxRR

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Darn - ENT doctor's office informed me that my insurance company will not approve botox injections for speech improvement. I'm not surprised but hoped the doctor could come up with a justification for the procedure, as the insurance co. told me these requests are decided on an individual case basis. The person who gave me this news said not to give up hope. Following an exam, the ENT doctor will be able to supply the insurance co. with more specifics concerning my condition which may lead to approval of the treatment. Another case of wait, wait, wait.

I was told by my neuro that botox is not covered under insurance for PLS. But the treatment protocol can be worded in such a way that it will be covered. That is what happend in my case. I received a letter from my insurance company saying i'm covered. I start my treatment on May 8th.
 

old dog

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TxRR - Thanks for the information. Hope the treatment is successful for you.
 

brenda barton

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am going for 2nd treatment w botox on April 12. Let us know how your botox goes in May. I'm positive it will bring relief for you.
 

John1

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Just a post to keep this thread alive so TxRR can post his results next month.
 

John1

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am going for 2nd treatment w botox on April 12. Let us know how your botox goes in May. I'm positive it will bring relief for you.
Hi Brenda,

Any results to report from your April 12 treatment. Are the benefits from your December injections wearing off yet?

Thanks,

John
 

brenda barton

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the 2nd botox was done farther up top of left arm and shouder area towards back; he added afew jabs to left wrist but i didnt feel any lessening of effect. the december injections were still working. i have no pain in arm or hand anymore. i feel "knots" in the bicep and shoulder area but p/t showed us exercises to do 3 times a day and it slows up the tight feeling.

i did ask neuro about giving injections in throat to get speech back. he said its a sure fix and feels doing it would make me more susceptible for pnuemonia.
 

traveler1

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Hi Everyone!

I'm a long-time stalker and I think it's finally time to join the conversation:)

I understand that botox would relieve the pain associated with spasticity, but since it works by paralyzing the affected muscles, does it really help with function? Is just enough Botox used to loosen the muscles and not paralyze them?

TxRR, will this treatment aid in your walking? Also, I'm totally envious-- in a good way:) -- of your muscle strength! My muscles are now so weak that curbs are sometimes challenging! I can still walk semi-decently in ideal conditions (warm weather, flat surfaces), but throw in any number of variables (cold weather, crowds, loud noises, emotional strain, etc.) and I immediately go into Frankenstein mode! If Botox would allow me to extend my mobility a little longer, or dare to dream, even improve it, I'd do it in a second!
 

TxRR

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travler1,

This is the way that I understand how Botox works:

How does Botox Work?

The "tone" of a muscle -- how floppy or tight it is -- depends on the nerve impulses (messages) which reach the muscle from the brain. These messages are carried by chemicals in the nerves to that muscle. Botox is a substance which blocks the chemical message before it can enter the muscle. In this way it prevents the muscle tightening which results in spasticity. Botox does not cure spasticity. The "block" is most effective 1-2 weeks after the injections. Three to six months later the spasticity usually returns. We do not usually recommend more than 2 Botox injections into the same muscle.

I haven't read anywhere that Botox paralyzes the muscle. As stated above it just blocks the signal from the brain to reduce spasticity. So yes, I do believe it will help with function. My neuro once told me that if it weren't for the spasticity, I would be able to walk normally and maybe even run. So if Botox reduces the spasticity then walking function should improve. Now you also have to be administered the correct dosage. To much Botox will loosen the muscle and make it feel weaker. Not enough Botox will prevent the spasticity from being reduced.

I experience the same walking challenges that you do so thank you for the compliment about my muscle strength. I am determined to continue working out my legs regardless of my disability. The rewards have far out weighed the pain staking and gut wrenching work outs that I have had to endure. It has been both physically and mentally challenging. But the body is remarkable in that it can be pushed way beyond it's limits and I try to do that on a daily basis.
 

traveler1

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Thanks TxRR! I really appreciate your response. I think the part I had a hard time wrapping my brain around was that if botox blocks the signal, then how does one control the muscle. I guess the answer lies in injecting just the right amount. I have an appt. with my neuro in a couple of weeks; I will definitely ask if I'm a good candidate for injections.

Thanks again for the info and good luck with your botox treatment!
 

TxRR

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My neuro explained this to me about 5 years ago so I'm working off of memory here. He said, in a normal healthy person, the brain sends this powerful signal to the muscle through the spinal cord. Now somewhere along the spinal cord that signal is weakened naturally by the body so only the right amout hits the muscle.

In people like us that signal is not regulated by the body so it hits the muscle at full force thus causing spasticity. Botox, in the correct dosage, works by regulating the signal and only allowing the correct current to pass. Kind of like how a resistor reduces the amount of electrical current through a circuit.

Anyone, please feel free to elaborate or correct me if i'm wrong.
 

traveler1

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Thanks again, TxRR. Great explanation. I look forward to hearing good news regarding your treatment!
 
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