Hi, I'm unsure1! Can anyone offer info around CP and botox?

unsure1

I have had a mild form of cp since birth, I was recently told by my doctor about the botox injections. My right leg is shorter than my left, I have scoliosis and sciatica, balance problems and foot drop. But I am 59 yrs old and have a high deductible on my insurance and am worried about the cost and effectiveness. I'm also nervous about muscle weakness that's caused by the botox, since I already have this.  Anyone who can give me more information about all these concerns would be appreciated before I make a decision to go ahead with this or not.

janer1967

Hi and welcome 

There are lots of members here with CP and there is a section you may find some info in 

We also have a CP meeting on mondays you might want to join 

I will also tag in out own cp adviser 

@Richard_Scope can you advise here 

unsure1

Thank you I'm hoping I can find out a little more information, I'm not too good with forums but will do my best to navigate around.

janer1967

Feel free to ask any questions if you get stuck 

chiarieds

Hi @unsure1 - & welcome to the community. Scope has some info on Botox injections here: https://www.scope.org.uk/advice-and-support/botox/   but Richard will  know more about these.

The section on CP, mentioned above, is here:  https://forum.scope.org.uk/categories/physical-impairments-and-cerebral-palsy

Cher_Alumni

Hi @unsure1 and a warm welcome from me!

Just to add to the above, I've moved your post to our Cerebral Palsy category and will notify @Richard_Scope about your question.  

Here's some more info around the online CP cafe held fortnightly if you'd like to get involved too.

Please give me or any of the team a shout if you have any questions about navigating the community and I hope you have a lovely weekend!

unsure1

Thanks so much 

Richard_Scope

Hi @unsure1
Good to meet you. I haven't had the treatment myself but I know dozens that have and have had positive outcomes. One of the most common symptoms of cerebral palsy is muscle stiffness and restricted movements. Living with cerebral palsy, we often struggle with unpredictable, stiff movements and experience pain. There are many different treatment options,  to help manage the difficulties of cerebral palsy.

Botulinum toxin A, often referred to as Botox, presents a temporary treatment option via injectable therapy to reduce muscle spasticity. Bacteria secrete this toxin and medical research has led to the successful and safe alteration of it to be used in people with specific medical conditions, including cerebral palsy.

There are some risks, but for people with CP with limited movements, discomfort, and pain, it can provide significant relief. It is not a permanent solution and you will need regular treatments.

unsure1

Thankyou for the info I'm just undecided and concerned about the cost (my insurance isnt great) and the possibility of bad side effects! Once I start it I will have to continue getting the shots, I appreciate your response!

Richard_Scope

Hi @unsure1
Usually, people will have the treatment every three months or so. I have not heard of anybody having horrendous side effects. I am unable to advise on the cost to your medical insurance.

unsure1

That eases my mind alot! Thanks again. 

WestHam06

Hi @unsure1, 
                      How are you? Welcome to the community and thank you for joining us. I have CP and also receive Botox injections every 3 months and have done for around the last 3 years. The impact that it has is significant, it really helps to relax muscle stiffness and enables activities such as physio to be easier to do, though I must stress this is personal experience only. I hope that this helps and you find the best option for yourself. Thank you.

unsure1

Thankyou for giving me alittle more confidence to try this! I am very nervous because within the last few years I have begun to have more issues with balance and tripping, are you able to function after the shots, do they cause more tripping or weakness for you right after you get them, this is what I heard could happen, this is concerning to me. Thankyou so much for connecting with me about this!

WestHam06

Hi @unsure1,  
                       Hope you're well and no problem we're here to support one another. I understand your concerns and please bear in mind it is down to personal experience. For me, once I've had the shot for about the next two days I'm more unbalanced than usual, however I was advised to carry on with physio to ensure that the muscles don't become to weak and though I'm not a fan of physio it does work. It's important to get a balance of keeping the muscles working whilst also resting.  As I say, for me, the benefits are worth it but it may be worth speaking through your concerns with the specialist giving the botox. Hope this helps, thank you.

unsure1

Thankyou and I am grateful for your opinion and personal experience. This is definitely different for everyone, but I dont see alot about older adults experiences, especially since I would just be starting this now. Again, thankyou!

chiarieds

Hi @unsure1 - please see the following link from the Chartered Society of Physiotherapy about a 55 year old lady:

https://www.csp.org.uk/public-patient/patient-stories/cerebral-palsy

unsure1

I'm beginning to see that this is something I'm going to have to try for myself, I've always just accepted the things I had trouble doing, I was able to do this because they weren't really causing major problems for me, but in the past few years I'm realizing things have begun to worsen. I have always shied away from doing anything that that could make things worse for me, always figured "just deal with it, it's not that bad," but after hearing from all of you, I'm seeing that I need to at least give this a try! Nothing is ever easy, but it could greatly improve my retirement years! Thankyou for everything, hearing from all of you has given me more confidence to take the chance and just try it!

chiarieds

 Hi @unsure1 - I hope others comments & experience has helped, Whilst there's no guarantee, it does seem that Botox + neuro physiotherapy may help. Today Richard_ Scope also gave a link to another member about the NICE guidelines about CP, which I'm sure he won't mind me sharing with you, & I quote,

'Scope has worked with the National Institute of Clinical Excellence (NICE) to create guidelines for an Adult CP Care Pathway. The problem is making G.Ps aware of it and making sure they adhere to its recommendations.' 

You might also welcome the chance to have a 'virtual chat' with Richard & Scope members with CP next Monday (29th) from 4-5.30 pm, in Scope's CP online cafe. Please click on the following link if interested to find out more, & sign up: 

https://forum.scope.org.uk/discussion/73129/our-next-welcome-cafe-is-monday-14th-of-december-4pm-until-5-30pm  (ignore the date here btw)

Please let us all know how you get on; your experience may very well help another.  

unsure1

Thank you again and I will do that. I will also update with any new procedure results.