Has anyone had Botox used on them for dystonia and if so what was the outcome? Thank you for your help.

[kaufmlin]

[Gloria1952]

I heard about that type of treatment and asked my neurologist about it because I have severe dystonia. He did not recommend it as he said it would kill the nerves and then I would have even more problems. I hope this helps you.

Gloria1952

[kaufmlin in reply to Gloria1952]

Thank you Gloria for the information. I do not have faith in the doctors around where we live and feel they just want to experiment using the Botox...not knowing what they are doing.. Thanks for caring.

kaufmlin

[Taid]

Botex

My wife developed a form of Dystonia some 10 years ago. Dysphonia of the larynx. It makes speaking difficult, voice will fade or be husky. Val has been having Botex injections in her throat roughly 3 month intervals now it is down to 2 months. It does help but it is palliative it does not cure.

Botex is a nerve agent not to be played with lightly only under medical supervision.

Botex & Spinal injuries

Article by Meanie Reid 'Times Magazine' 24th March 2012. Spinal Column.

Melanie was paralysed in a riding accident about 2 years ago.She talks about having Botex treatment being used calming leg spasms.

It is worth researching or talking your doctor about it.

SIA spinal injuries association have a good web site with a great deal of useful information.

Taid

[kaufmlin]

Taid, my mother has severe Dystonia in her left foot which causes it to curve inward. She is unable to walk due to this Dystonia. The doctors in our city want to try Botox...even though they have never done this before for Dystonia....makes me a little leery for they do not know what they are doing. An Orthopedic surgeon in another big city wants to cut the tendons in her foot to stop the Dystonia ...which I think is just crazy for Dystonia is caused by the nervous system and having surgery like this you can still have your Dystonia and cut tendons I would think would mean never walking again. Thank you so much for sharing about your wife and her Dystonia and all the good information. I greatly appreciate your help!

kaufmlin

[Taid in reply to kaufmlin]

My wife is treated at the Queen Elizabeth Teaching Hospital Birminham

ENT unit. I understand it is also used in a Manchester Teaching Hospital. Botex I think its worth trying.but through your Doctor. Melanie Read seems to have a similar problem. As I said it is palliative but it should give some improvement.

Try talking to the Queen Elizabeth uhb.nhs.uk

or NHS Direct for further information.

Pasq Hapus.( Happy Easter) A Staffordhire lad in Wales

[kaufmlin in reply to Taid]

Thank you Taid for your reassurance which I greatly need. I will try talking to the Queen Elizabeth.

Happy Easter to you and your wife. Thank you for all the help you have given me!

kaufmlin

[Moderator_1]

Kaufmlin

Not specifically about botox treatment but you may find some information or reassurance on earlier threads about foot dystonia. You can find them by doing a search using foot or feet in the search box.

[kaufmlin in reply to Moderator_1]

Thank you for guiding me to information on foot dystonia on earlier threads. I will take a look at these later this morning when I have more time. Thank you for your help which I greatly need for my mother in deciding how to help her with her foot dystonia.

Sincerely,

Kaufmlin

[Moderator_1]

Kaufmlin

Parkinsons UK has some good written resources, the site is:

parkinsons.org.uk/advice/pu...

I hope you find these two links below relevant

parkinsons.org.uk/PDF/FS43_...

parkinsons.org.uk/pdf/FS51_...

Best wishes

[kaufmlin in reply to Moderator_1]

Thank you, thank you, thank you !! for your caring and kindness Moderator_1...all of you ( This includes you Taid also!) who replied. You have given me more reassurance and resources to look at and think about which I plan to share with my mum so she can make an informed decision on how she wishes to handle her Parkinson's. We have been lost prior to this and did not know what to do.

Thank you again. Bless you all.

kaufmlin

[Hikoi]

Kaufmlin

Is your mother under care of a Neurologist? If so do they specialise in movement disorders?

I see one doctor suggested surgery, i find that interesting and think that you live in the US as i havent heard of surgery suggested in the UK. From reading this site there seems to be a differing approach generally btwn USA and European in this regard.

Your mother is so fortunate to have you caring about her in this way.

[kaufmlin]

Dear Hikoi,

My mother is under the care of a Neurologist who has been in practice a long time...yet does not take time with his patients ( A visit can last 4 minutes!) Not good. I do not know if he specializes in movement disorders. There is one other neurologist in practice with this doctor and I do not know what he is like. We live in the USA. There is a Parkinsons/movement Treatment Center in a nearby city but I cannot get my mom to cooperate and try this clinic. I do not understand why she will not try this clinic! She is 81 years old and mentally sharp as a tack. She is stubborn. I think she has given up all hope and is depressed. The doctor who wants to cut her tendons is a surgeon...an orthopedic surgeon, who I doubt has any understanding about Parkinson's Disease and Movement Disorders. I do not trust him and I have a feeling my mother does not trust him on cutting her tendons in her foot/leg. I pray she does not choose this treatment.

I agree with you in that it seems the UK has a differing approach than in the USA ( or at least in the area where I live.) There is a lot of ignorance and lack of knowledge by physicians and nurses where we live regarding Parkinson's and Movement Disorders. I will have to continue to coax my mother about the Parkinson's Clinic if she wants to try to get better. We have exhausted almost all our local resources that treat this disease.

Thank you for caring Hikio. It means a lot. It is very frustrating dealing with an elderly parent who has Parkinson's and seems to have " given up" rather than continue being the fighter of the disease like she used to be.

I appreciate your input for I need as much information as I can get as well as questions to get me thinking of different avenues we have not tried yet.

Again, thank you for your kind response!

kaufmlin

[Melodysam1890]

I have had the Botox injections in my neck & shoulders to relieve the "stiffness" - before I had the first round, my neck & shoulders were like a piece of rock & painful to move - after three different times, my neck & shoulders were more "limber." ... It's not a permanent fix though -

[kaufmlin in reply to Melodysam1890]

Melodysam1890, thank you for sharing about your experience with the use of Botox. It reassures me that this may be a helpful treatment for my mother's dystonia. I realize it is not a permanent fix but it will give her some relief.

At this time we are waiting on a doctor to contact us ( she must be pretty busy for it has been two months) Mom sees a podiatrist who keeps in contact with this other physician who would do the Botox treatment. Now we must be patient and wait. Again, thak you for sharing. It really was quite helpful.

Take care!

Kaufmlin

[goose63058]

My face started to pull to the side.I told my neurologist and I now get Botox injections around my face. Eyes ,cheeks , my face no longer looks like I smelled something rotten and I look younger No more bitch lies between my eyes and the wrinkles around my eyes are slowly but surely going away, or at least the white lines are full of suntan now. So they look gone.