Botox injections? - The DIS Discussion Forums

SoonerSarah · 08-10-2011, 10:17 PM

Has anyone gotten botox injections? Where did you get them and what was the experience like? Did you have a lot of pain, either during the injection or afterward? Anyone had them specifically for tone? Notice any improvements?

SueM in MN · 08-10-2011, 11:06 PM

Quote:

Originally Posted by SoonerSarah

Has anyone gotten botox injections? Where did you get them and what was the experience like? Did you have a lot of pain, either during the injection or afterward? Anyone had them specifically for tone? Notice any improvements?

My DD has gotten Botox a number of times in the pelvic floor (ouchy painful place to get any injections) and her hamstrings, behind her knees.

Several times she had conscious sedation, which basically means that she was sedated, but awake. The last time, they forgot to schedule the nurse anesthetist
and DD elected to go ahead with it anyway. They did use a numbing cream ahead of the injections, which does help a lot. Even without the sedation, she did very well and had minimal pain.

How long the effects last depend on the person. For some and for some applications, it can be up to 2 years or as little as 6 months. Botox is used a lot to decrease tone so that range of motion can be done to a further extent and muscles stretched. The exercises are very important and for some people, that will loosen the muscles enough that more Botox is not needed.

In my DD’s case, she has tight knees and no longer had full range of motion in her knees. After Botox and some splints worn for about 15 minutes a day, she can straighten her knees almost completely. She stands so much straighter that we had to raise her gait trainer an inch higher.

I know it’s a hard decision because it can be a bit painful and just the idea of putting Botox into your child is difficult, but it can do a lot of good things. And, the ‘wearing off’ doesn’t sound like a good thing, but can be in case there was a bit too much relaxation.

DOREEN1779 · 08-11-2011, 06:31 AM

I have received Botex injections in my left arm and right arm for about 4 years.. Prior to that it was the alcohol nerve block injections. I get about 10 shots a session from 10mm to 30mm each area. Mine is for dystonia and spacisity and they do work. For me Because the muscles fight so much during the procedure, I feel relief right after because of muscle fatigue, but I see maximum results around day 7 with the most notible around day 4. Because the needle is injected straight into the muscle/ nerve it does hurt but you will get used to it. The worst injection is like an extreme muscle cramp. The worst location site is when the nerve is close to a bone. Also, do not apply lotion that day, it will reduce skin irratation. Mixed with the right prescribed medication, the results can last up to 5 or 6 months, because you have not received any b4, you have no tolerance to the drug so you are probably on the high end of that number. Good luck!

Doreen

DOREEN1779 · 08-11-2011, 06:43 AM

I forgot to mention, mine are also for tone. I went through gait lab at Albert Einstein in Philadelphia before starting, so they had a pretty good idea what areas to target. Afer the injections, rehab and splinting will also be really beneficial. If you have any questions, you can PM me. I have been a patient of most of the children's hospitals on the Northeast.

Doreen

SoonerSarah · 08-11-2011, 01:27 PM

Thanks for the responses! If we get the approval, it looks like she will be getting them in a few weeks.

SueM in MN · 08-11-2011, 10:31 PM

Quote:

Originally Posted by SoonerSarah

Thanks for the responses! If we get the approval, it looks like she will be getting them in a few weeks.

Good luck to your little one.
After what she has already gone thru, she will probably sail thru this with little problem.

DVC96 · 08-14-2011, 07:19 PM

My DD, nearly 19, received Botox injections for many years starting around 6 years old. She has mild spastic diplegic CP, but is globally affected. Anyhow, when she was little, her leg muscles were so tight she couldn't put her heels down at all - she was always walking on her tiptoes and with a lot of scissoring. So, we started Botox at WRAMC. She received as many as 8 at one time in each leg, usually about 3 months apart. She never once fussed about it - they did use the numbing spray first, though. We have seen wonderful results throughout the years. She has been able to put her heels totally down for some time now, though she has an odd gait and no heel strike. Her old PT and her riding instructor could always tell when she was due for shots. We haven't had any for about 18 months now, but she is recently experiencing tightness in her legs that isn't being relieved with muscle relaxants so we may need to start again. I would like to say that we have a wonderful pediatric neurologist who was always accomodating to DD. She would never lay down to get her injections like they wanted her to - she always wanted to sit up and watch. It wasn't too difficult for the neurologist when she was little, but as she grew into a 5' 7" adult and still refused to lie down, he would get down on the floor on his knees and let her rest her foot on his head while he did the shots! (Of course, all the residents loved to watch this and tease him about it!) Anyhow, I was skeptical at first about starting Botox, but it really saved us from heel cord surgery. She was never cast afterwards - perhaps because she is mobile and able to bear weight. I wish you all the best and hope you have good results like we did.

twinmum · 08-15-2011, 07:54 AM

Our son has received botox injections about once a year for 8 years or so. He has cp - spastic diplgia, and he has injections into the adductors and gastrocs. The strongest effect is about 5-7 days in, and the last 2 times, he has been casted after 7 days for 7-10 days. (Before that we had a huge stretching regimen and time in gaiters to keep him in an great stretch for an extended period). He gets a walking cast and while he's slower than usual, and sleeping is a bit trying, he can get around in the cast. The very first time he had botox he had the most dramatic results - although I think this reflection has something to do with our expectations.

Our son has some mild sedation as well as a topical for numbing. He is prone to get anxious about procedures etc so it's not a walk in the park, but it's quite quick.

Good luck!

ame · 08-20-2011, 03:25 AM

my DD has botox as needed (ATM it's about every 12 months) for spastic diplegic CP. It makes a huge difference to her ROM and give us a great oportunity to build some strength. She is sedated throughout as she also has ADHD. She hasn't ever complained of any pain post procedure.

50surgeries2012 · 12-07-2012, 01:42 PM

I've had Botox injections twice. Once in my lower back during one visit, and once in my right ankle, and right hip at another visit. The procedure was done at one of the hospitals in Portland. I can't remember which one. But, I didn't require sedation since I've been poked and prodded with needles so much in my thirty-two years of life that I was used to it. It came in handy after having 50 surgeries on every part of my body to correct all of the bone deformities.

Anyway, it was done in my right ankle, and hip to loosen up the muscles after they contracted from me not being able to weight bear on my right leg before/after the hip replacement surgery. There were no improvements as to this day. My right leg is still contracted, and I toe-walk without the AFO on. I did have some pain during, and after the injection. But, after so many years of surgeries, and other painful procedures I've been through. It wasn't a big issue for me.

The second time around. The team of doctors tried doing injections in my lower back to see if that would help. It didn't make any improvements.

08-10-2011, 10:17 PM	#1
SoonerSarah DIS Veteran Join Date: Sep 2010 Location: Odessa, TX Posts: 720	Botox injections? Has anyone gotten botox injections? Where did you get them and what was the experience like? Did you have a lot of pain, either during the injection or afterward? Anyone had them specifically for tone? Notice any improvements? __________________ Sarah & Doug-Married June 2000 Lainey- Dec. 2003, Evangeline- Aug. 2007, Kenley Sept. 2009 Kenley-May 29-skull fracture, 2 hemorrhages, 1 hematoma, stroke, 4 skull/brain surgeries, g-tube (since removed, YAY!), vocal cord damage, sub glottal stenosis, reflux, hemiparesis, seizures

08-11-2011, 06:31 AM	#3
DOREEN1779 Mouseketeer Join Date: Jul 2010 Posts: 290	I have received Botex injections in my left arm and right arm for about 4 years.. Prior to that it was the alcohol nerve block injections. I get about 10 shots a session from 10mm to 30mm each area. Mine is for dystonia and spacisity and they do work. For me Because the muscles fight so much during the procedure, I feel relief right after because of muscle fatigue, but I see maximum results around day 7 with the most notible around day 4. Because the needle is injected straight into the muscle/ nerve it does hurt but you will get used to it. The worst injection is like an extreme muscle cramp. The worst location site is when the nerve is close to a bone. Also, do not apply lotion that day, it will reduce skin irratation. Mixed with the right prescribed medication, the results can last up to 5 or 6 months, because you have not received any b4, you have no tolerance to the drug so you are probably on the high end of that number. Good luck!Doreen

08-11-2011, 01:27 PM	#5
SoonerSarah DIS Veteran Join Date: Sep 2010 Location: Odessa, TX Posts: 720	Thanks for the responses! If we get the approval, it looks like she will be getting them in a few weeks. __________________ Sarah & Doug-Married June 2000 Lainey- Dec. 2003, Evangeline- Aug. 2007, Kenley Sept. 2009 Kenley-May 29-skull fracture, 2 hemorrhages, 1 hematoma, stroke, 4 skull/brain surgeries, g-tube (since removed, YAY!), vocal cord damage, sub glottal stenosis, reflux, hemiparesis, seizures

08-15-2011, 07:54 AM	#8
twinmum DIS Veteran Join Date: Jul 2006 Posts: 761	Our son has received botox injections about once a year for 8 years or so. He has cp - spastic diplgia, and he has injections into the adductors and gastrocs. The strongest effect is about 5-7 days in, and the last 2 times, he has been casted after 7 days for 7-10 days. (Before that we had a huge stretching regimen and time in gaiters to keep him in an great stretch for an extended period). He gets a walking cast and while he's slower than usual, and sleeping is a bit trying, he can get around in the cast. The very first time he had botox he had the most dramatic results - although I think this reflection has something to do with our expectations. Our son has some mild sedation as well as a topical for numbing. He is prone to get anxious about procedures etc so it's not a walk in the park, but it's quite quick. Good luck! __________________ Sorry, there is just a Pre-Trip Report for Mark's Starlight Wish Trip: November 2008: http://www.disboards.com/showthread.php?t=1883215 With a brief report on Mark's wonderful Wish Trip!

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08-11-2011, 06:43 AM	#4
DOREEN1779 Mouseketeer Join Date: Jul 2010 Posts: 290	I forgot to mention, mine are also for tone. I went through gait lab at Albert Einstein in Philadelphia before starting, so they had a pretty good idea what areas to target. Afer the injections, rehab and splinting will also be really beneficial. If you have any questions, you can PM me. I have been a patient of most of the children's hospitals on the Northeast. Doreen

08-14-2011, 07:19 PM	#7
DVC96 Mouseketeer Join Date: Jul 2006 Location: Northern Virginia Posts: 110	My DD, nearly 19, received Botox injections for many years starting around 6 years old. She has mild spastic diplegic CP, but is globally affected. Anyhow, when she was little, her leg muscles were so tight she couldn't put her heels down at all - she was always walking on her tiptoes and with a lot of scissoring. So, we started Botox at WRAMC. She received as many as 8 at one time in each leg, usually about 3 months apart. She never once fussed about it - they did use the numbing spray first, though. We have seen wonderful results throughout the years. She has been able to put her heels totally down for some time now, though she has an odd gait and no heel strike. Her old PT and her riding instructor could always tell when she was due for shots. We haven't had any for about 18 months now, but she is recently experiencing tightness in her legs that isn't being relieved with muscle relaxants so we may need to start again. I would like to say that we have a wonderful pediatric neurologist who was always accomodating to DD. She would never lay down to get her injections like they wanted her to - she always wanted to sit up and watch. It wasn't too difficult for the neurologist when she was little, but as she grew into a 5' 7" adult and still refused to lie down, he would get down on the floor on his knees and let her rest her foot on his head while he did the shots! (Of course, all the residents loved to watch this and tease him about it!) Anyhow, I was skeptical at first about starting Botox, but it really saved us from heel cord surgery. She was never cast afterwards - perhaps because she is mobile and able to bear weight. I wish you all the best and hope you have good results like we did.

08-20-2011, 03:25 AM	#9
ame Addicted to travel Join Date: Jul 2010 Posts: 205	my DD has botox as needed (ATM it's about every 12 months) for spastic diplegic CP. It makes a huge difference to her ROM and give us a great oportunity to build some strength. She is sedated throughout as she also has ADHD. She hasn't ever complained of any pain post procedure.

12-07-2012, 01:42 PM	#10
50surgeries2012 Earning My Ears Join Date: Nov 2012 Posts: 63	I've had Botox injections twice. Once in my lower back during one visit, and once in my right ankle, and right hip at another visit. The procedure was done at one of the hospitals in Portland. I can't remember which one. But, I didn't require sedation since I've been poked and prodded with needles so much in my thirty-two years of life that I was used to it. It came in handy after having 50 surgeries on every part of my body to correct all of the bone deformities. Anyway, it was done in my right ankle, and hip to loosen up the muscles after they contracted from me not being able to weight bear on my right leg before/after the hip replacement surgery. There were no improvements as to this day. My right leg is still contracted, and I toe-walk without the AFO on. I did have some pain during, and after the injection. But, after so many years of surgeries, and other painful procedures I've been through. It wasn't a big issue for me. The second time around. The team of doctors tried doing injections in my lower back to see if that would help. It didn't make any improvements.