Question - Shoulder Injury (dystonia)

by Julie
(Miramar, Florida)

My 9 year old daughter was diagnosed last year July with Dystonia, a neurological condition that affects the muscles of the body. In her case, the condition only affects her left side. The condition causes her muscles to get very tight, affecting her ability to chew, swollow, speak, use her left hand and leg. Her mobility has been severely impeded over the past year but since February of this year, it seems to have leveled off.


My daughter has undergone every test imaginable and all results have been negative, including a CAT Scan, PET Scan, and an MRI of the brain. While it is good to know that the results were negative/normal, we would feel more comfortable knowing what is wrong.

Based on my observation, the condition seems to stem from the muscles at the top of her shoulder - between her neck and shoulder. It appears that there may have been some sort of injury to her shoulder around the time we noticed something was wrong that we are not aware of at the time.

We are praying to God for a miracle that she will regain complete mobility soon. She is being followed by a Neurologist from Jackson Memorial Hospital. We are also seeing other specialists in the Miami-Dade and Broward areas in addition to engaging in daily exercises to help stretch and keep her muscles active.

We would like to know definitively if there is an injury to any of her shoulder muscles, especially the trapezius muscle that is possibly not being detected by the doctors, the X-Rays, or MRIs, and what can my husband and I do to help our daughter regain complete restoration of her left side, including her ability to chew, swallow and speak as she did prior to this condition.

Any light you can shed on my daughter's case would be greatly appreciated.

Thanks.

Julie

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Jul 23, 2008
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Your family is in my prayers...
by: Bart - SII

It is very hard to deal with such an illness, especially in someone who is so young. I will keep your family in my prayers.

It sounds like you are doing everything that is possible for your daughter. I would have recommended seeing a neurologist and specialists, daily exercises to maintain mobility, and working on avoiding movements that seem to increase pain or stiffness. You are already engaged in all of these things.

I cannot claim to be very experienced with Dystonia, but what little I have read about it corresponds to the exact treatments you are already undergoing.

Try to stay positive, and I pray that all will work out for the best.

Keep us updated on how she is doing.

Bart

Nov 26, 2010
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Shoulder dsytonia
by: Anonymous

I have shoulder dystonia that started 2 years ago of unknown origin. It comes and goes. You did not mention if your daughter has the "gest antagonista", thot is, does touching relieve the symptoms. Also, helped in my case. I have also learned that I can switch my brain between having the problem and not having it. This started by first imaging toughing my arm (which if I really did would relieve the symptoms). She may be too young to try such but may be not.

Jun 14, 2011
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Dystonia
by: Anonymous

Has she tried a neurological chiropractor? I have cervical dystonia and it has helped a great deal. It is more brain based therapy....

Jan 16, 2015
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I will pray for u NEW
by: tony kroos

I feel really sad for your daughter. Why don’t you try consulting with the specialist hospital at Minneapolis. I have heard that the hospitals there are pretty good with nervous problems. I hope the best for your daughter. omnitech support reviews

Apr 10, 2015
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I am extremely sorry with what NEW
by: Anonymous

I am extremely sorry with what ever happened to your daughter, it was such a painful situation to handle. I work with custom essay writing service and i have met with a person with similar problem. He has gone through such miserable situation and got good care and medication and now everything was fine. I really wish the same thing would happen with her. And get good recovery.

Jun 11, 2015
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