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Old 12-20-2010, 05:00 PM
Donna Thomson Donna Thomson is offline
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Default Dystonia and Baclofen PUmp

Hi Everybody,

Nick is having the same symptoms in his left leg as he had before his most recent surgery to replace the baclofen pump. His leg is very rigid in a frogged position, painful if forced to extend leg and sweaty palms (unable to release fist). Overflow spasm into upper body, but source is definitely left leg. These symptoms are intermittent.

I am thinking it's dystonia. And I wonder if anyone knows whether you can get increase in dystonia and whether it's less treatable with the pump than spasticity which seems pretty well controlled.

We have a refill of the pump tomorrow so I'll ask the neurologist too. But wondered if you guys had experience of dystonia and a pump.

Thanks as always and sending lots of love to all my CN2 friends, xoxDonna
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Donna, Mum to Natalie (18), ablebodied, beautiful, kind and high strung and Nicholas(22), severe spastic CP, non-verbal, tube fed, multiple surgeries, chronic pain, palliative, happy kid except when Liverpool football club is losing!
Check out my blog: http:/www.donnathomson.blogspot.com

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Old 12-20-2010, 06:44 PM
Brandon's Mom Brandon's Mom is offline
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I don't have an answer for you, just wanted to say how sorry I am to hear that Nick is so uncomfortable right now and I hope you get some answers and treatment options soon.
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Joy- hearing impaired and chronically ill due to ACM, mother to Brandon (10-25-87) vision impairment, CP, Hydro w/ VP shunt, MR, ADHD & has had a Hemispherectomy for seizures, Brittany (10-25-87) Hydro w/LP shunt, allergies, asthma, & learning disability, and Andrew (4-18-91) healthy & gifted

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Old 12-25-2010, 03:45 AM
DystoniaGal DystoniaGal is offline
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I dont have an ITB pump, but I am on oral baclofen for my dystonia and I have been on baclofen for over 20 years now. Sounds like there may be a kink in the tubing if the spasms are intermittent.
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DYT1 positive dytonia . Dx 1989.
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Old 05-23-2011, 10:43 AM
raymccarty raymccarty is offline
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Sounds like a lot going on, not so sure about dystonia. I have had dystonia, both cervical and trunk (back) for the last 10 years. Something about it doesn't sound right. Is it possible that they hit a nerve putting in the pain pump? It was recommended to me to put one of those in, but researching found many issues with them and I came to the thought that in my case might do more harm than good so I haven't done it.....at least yet....there are many days the pain is so bad I'm tempted.

Tried oral baclofen for years, never did much for me other than made me dizzy all the time......

Have you been to a movement disorder neuro that really knows dystonia? Might try that first....

Ray
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Old 05-23-2011, 06:04 PM
Donna Thomson Donna Thomson is offline
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Hi Ray,
Thanks for your reply, wow my post was a long while ago and Nick has been through a lot since then. Another pump replacement. He's fine now and the pump seems to be working - I'm a great fan of it. But we run a mixture of spinal anaesthetic and baclofen. Seems to work for us. Good luck, Donna
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Donna, Mum to Natalie (18), ablebodied, beautiful, kind and high strung and Nicholas(22), severe spastic CP, non-verbal, tube fed, multiple surgeries, chronic pain, palliative, happy kid except when Liverpool football club is losing!
Check out my blog: http:/www.donnathomson.blogspot.com

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