Botox For Dystonia

[beehive23]

Well im climbing out the rabbit hole of covid hell.........scheduled for spinal unilateral botox injections over the mountains 28th december ,university hospital Denver, to alleviate MASSIVE cervical etc dystonic pain hoollllaayyyy! bring on the botox next stop the pump for Apomrphine and a seperate L-dopa pump.........then...mri guided ultrasound.........then....................thats it. Happy Solstice! cheers!

[Kwinholt]

Beehive, Let me know how the Botox does for your cervical dystonia. I currently get Botox injections in my leg and foot for dystonia there, however my dystonia is now into my neck , face ect. Take care. Karen

[beehive23 in reply to Kwinholt]

i will do that how has it worked for you?cheers.

[Kwinholt in reply to beehive23]

It has helped with my foot and ankle dystonia. I receive the injections every 3-4 months. Karen

[beehive23 in reply to Kwinholt]

cheers! they tell me every 3 months ...in perpetuity hehehe...

[etterus in reply to Kwinholt]

I’m curious about how difficult the Botox injections are to take. I’m 72 yo and have had dystonia in my left foot for at least 10 years. I received DBS for it with great results but that was 5 years ago. In the 20 years that I have been dealing with non tremor PD I am the only one that I am aware of that is still walking without falling. My worst time is at night. I’m awake every 2-3 hours due to the dystonia, at which time I take Rytary and try to manage my bladder issues. The foot and “uringency “ seems to be a tag team that is making my life miserable. I’m exhausted all the time!!

[beehive23 in reply to etterus]

im getting along spne i was told most likely side effect difficulty holding head up and must do phys therapy simultaneous. but ill let you know!

[Kwinholt in reply to etterus]

Etterus, The injection in the bottom of my foot hurts when I receive it but pain goes away with in minutes. This time around my dr chose different areas for it and didn’t seem to work as well as the bottom of my foot. Karen

[Juliegrace]

Pump for l-dopa? Are you going to be on Duopa?

[beehive23 in reply to Juliegrace]

apparently at Univ Colorado they dont use the duodenal pump with the button etc the use a small cassette like diabetics use wheas 2 tiny neddels pierce the abdomen like a pin pick and the cassette straps around your waist eliminating the sub q apo self injection which suxcks. cheers. sorry pd typing...i dont fix typos hhehehehehe

[Juliegrace in reply to beehive23]

I believe you will be taking part in a clinical trial. There are two or three different companies trialing c/l using a subcutaneous pump. Good luck, I’ve heard very positive things about it. Please keep us informed on the details and your response.

[beehive23 in reply to Juliegrace]

Thank you!....no clinical trial i tried to get on with it but 9 hrs through snow and mountains once a week was not doable. But apparently its my next in line treatment according to my neuro surgeon and team.....ill update , cheers for the support/info....knowledge is power........

[Juliegrace in reply to beehive23]

Now I’m very curious because I was not aware any of the options were available for regular treatment. I have been waiting on these trial results for three years.

[beehive23 in reply to Juliegrace]

wellll......am scheduled UCH for procedure 28th Dec confirmed with neuro doc this afternoon.

[rebtar]

Sounds like good things on the horizon. Is the subcutaneous pump Neuroderm? According to their website they’re currently recruiting for phase 3 clinical trials.

[beehive23 in reply to rebtar]

that i do not know.........am focusing on botox then will see.............preapproved for apo etc.......cheers..

[rebtar]

Good luck with it all.

[artisin]

I have been receiving Botox for cervical dystonia brought on by a rear-end car accident. I received it before FDA approval and started it in 2002. It does help and is well worth it, as least for me. It gives me back a little of my life and it has been 20 years. The initial shot was the hardest as it affected me by making me limp and trouble swallowing. But, pushed through and the second shot was better. I go ever Qtr., or 4 times a year. It is a roller coaster because it takes a bit of time to kick in (up to two weeks), you feel good for about a month, and then it begins to wear off--hence the roller coaster. I don't think I'd be alive without having the opportunity to get my Botox injections. It only hurts when my muscles have contracted so hard that they are like stone and the needle needs to get into that muscle to release the Botox. I hope you will find this helps you as much as me. Since dystonia is musculoskeletal it isn't something doctors can see. But, a good doctor doesn't treat you like a textbook and works to find the areas of injection that will help or benefit you the most. All the best to you. I used to not be able to turn my head or neck and it was stiff. I get reprieve for a while in between my quarterly shots.