bpi/winged scapula

Treatments, Rehabilitation, and Recovery
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Re: bpi/winged scapula

Post by admin » Thu Sep 15, 2005 1:08 pm

Our family has been thru the long thorasic nerve damage with severe winging scapula. Our son was injured playing high school football last year. We were very fortunate that our orthopedic doctor diagnosed it within a month. We also had a second opinion at Gillete Children's Specialty Clinic of the same. Our son went to months of physical therapy with no results. Our original orthopedic refered us to Dr. Rahul Nath at the Texas Nerve and Paralysis Institute in Houston. After 6 months of severe pain, not being able to use his arm, and getting no where, we contacted Dr. Nath via e-mail. He has a web site that explains alot about winging scapula and long thorasic nerve injuries. He is also very good about returning e-mail. We went to Dr. Nath for a consultation and surgery. What a success! Within hours there was a positive change. Within a week the pain had subsided, within a month he only had moderate winging, and now 4 months later he has NO winging. He had lots of scar tissue built up around the injury, so I don't think waiting years for the condition to resolve itself is such a good idea. You owe it to yourself to check out his web site. Good Luck! We now have a son who is free to plan a future!

susanfrey
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Re: bpi/winged scapula

Post by susanfrey » Fri Sep 16, 2005 8:02 pm

My now 17 year old daughter was a competitive swimmer and had surgery in March of 2001 when she was 12 years old to repair her labrum in her right shoulder. Five weeks later, she started experiencing severe pain in her scapula. After repeated visits to the surgeon, he told her that there was nothing wrong with her and told her to "deal with it." We found another orthopedist who, within 10 minutes, diagnosed her with Scapular Bursitis. She was successfully treated with a cortisone injection but had a few more bouts of Scapular Bursitis up until January of 2004. Again, she was given cortisone injections in the bursa and the pain was relieved.

However, in January of 2004 she had severe shoulder pain (diagnosed as Multi-Directional Instability) and scapular pain and at that point, the scapular winged terribly and the pain continued. It did not heal until August of 2004, it took eight months to heal.

Between January 2004 and August 2004 we went from doctor to doctor, and got varying opinions from each. Opinions ranged from "A Capsular Shift for the shoulder instability will correct the winging" to "There is nothing wrong with her. There is no reason that she can't sit in school. If she can get in a car and sit in my office, she can sit in school", to "I'm not operating on her shoulder because her scapula is winging".

In another instance, we sat in an orthopedist's office and he told her that, based upon his experience with FSHD(Facioscapulohumeral Dystrophy) patients, that he was sure that she had FSHD and referred us to a neurologist for testing. He agreed that if tests concluded that there was no sign of FSHD that he would operate to correct the shoulder instability. Testing revealed Long Thoracic Nerve Palsy and we returned to that same orthopedist to arrange for the Capsular Shift on her shoulder.

He refused to operate on the instability, insisting that even though the tests were negative, she would eventually develop FSHD. He said this in front of my daughter who was 16 years old at the time and told her that he didn't know if it would 5,10, or 30 years, and didn't know if she would be in a wheelchair in 3 or 13 years, but that she would develop FSHD.

Finally, in September 2004 we found a competent orthopedist who felt that since the Long Thoracic Nerve healed itself, that he would operate on the shoulder instability.

In December of 2004 she had successful surgery to correct Multi-Directional Instability in her right shoulder. Things were fine for eight months; she returned to her normal, happy self and was feeling great.

Last month, the scapula began to wing again and she has severe, debillitating pain from her neck down her leg. A recent EMG and Nerve Conduction Studies revealed considerable damage to the Long Thoracic Nerve. The specialist who performed the studies tried his best to dismiss me, insisting that she will get better with time. It wasn't until I reminded him that this is her second bout with LTNP and when he realized that I knew more about the condition than him that he stopped to listen to me. He knew nothing about LTN Decompression surgery, and went as far to tell me that I was wrong, that was I referring to was a Nerve and Tendon transfer. I told him that it was apparent that I was getting nowhere with him and left his office.


I have a few questions regarding her condition. The first one is, has anyone had successful Long Thoracic Nerve Decompression surgery by a surgeon in Florida and, if so, who is it? I should also ask the question, has anyone had successful LTN Decompression surgery and, if so, with whom and where?

Also, a friend of mine gave me the name of Paul St. John, a Neuromuscular Therapist in St. Petersburg, Florida who successful treated him for severe headaches and shoulder pain. In doing research on Paul St. John, it appears that he has been a miracle worker for many, treating a wide variety of neurological and muscular conditions. He, himself was in chronic pain after experiencing three major accidents and began reseaching pain and the association between muscles and nerves. He developed the "St. John" method of Neuromuscular Therapy, taught someone to treat his condition and is now pain free. Information regarding Paul St. John can be found on www.stjohn-clarkptc.com and www.healthquestenterprisesinc.com/stjohnseminars. Has anyone tried Neuromuscular Therapy or this "St. John" method? I've scheduled an appointment with him as I'm exploring every avenue that I can until I can get her better.

Please let me know if anyone has had success with the Decompression surgery. As a parent it is so awful to see your own child in so much pain and professionals dismissing her the way that they have. It is such a helpless feeling and extremely upsetting that she is suffering so much and there is no relief available.

Thanks for any advice or help that you can give me. I really appreciate it.

babs
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Re: bpi/winged scapula

Post by babs » Sat Sep 17, 2005 10:16 am

HI my name is Babs, I am a fifty year young!lady. I have just posted for the first time on this sight, and am eagerly awaiting a reply to my questions on winged scapula. You seem very knowledgable on this subject and would appreciate you reading my post and replying back. Thanks. Babs

admin
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Re: bpi/winged scapula

Post by admin » Tue Sep 20, 2005 6:57 pm

Beth,

What happedned to the origianl site?

Thanks in advance,

Maureen

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Re: bpi/winged scapula

Post by admin » Thu Sep 22, 2005 10:14 am

Susan,
What an awful ordeal to have to go through with your child. I am so sorry. I have had a winging scapula for almost a year now. The pain is terrible!! I see alot of doctors. My pain specialist gives me trigger point injection in my subscapularis muscle. It helps for about 2 weeks. It just takes the stinging pain. the dull all the time pain never goes away. I know when I lay down at night that I can feel pain from the top of my head down to my toes on my right side.I have been debating on wehter to have the decompression surgery with Dr. Nath. I talked to a couple of people who have and with success. I'm in Pa. and he is in Houston. It would cost alot of money that we just don't have to fly 2 people down there and stay for about 5 days in a hotel because he does his own MRI and EMG before the surgery. I think I'm gonna have to charge my life away and go because the constant pain is unbearable.
Go to braintalk communities(google it) and go to the thoraic out syndrome forum. Lots of good info there and you can reach out to people who have had the surgery. Good Luck
Wendy

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Re: bpi/winged scapula

Post by admin » Tue Sep 27, 2005 6:48 pm

Wendy,
I'm so sorry for what you're going through. I did find a neurosurgeon, Dr. Allen Belzberg at Johns Hopkins who performs the Nerve Decompression surgery. Following is the information.

Dr. Allen Belzberg, MD Neurosurgeon
JohnsHopkins Hospital
Dept. of Neurosurgery Meyer 5-109
600 N Wolfe St.
Baltimore, Md21287
Phone: (410) 955-5810
Fax: (410) 614-9830
E-mail: sparadi@jhmi.edu

Good luck to you and I do hope you feel better.

Susan



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Re: bpi/winged scapula

Post by admin » Wed Sep 28, 2005 2:08 pm

I have had a winged scapula for 4 years now and I know what you are going through with the pain, but don't go to a chiropractor it makes the pain worse. One thing that helps the pain go away for a while is using an ice pack and put some Icy Hot on the scapula.

admin
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Re: bpi/winged scapula

Post by admin » Tue Oct 11, 2005 1:52 pm

try www.drnathwingingscapula .com.
you might find tips from there.it is better if you do not do any physical activities that ca increase the injury
i am so sorry for the pain you are feeling.
i have had winging scapula for 10 years now and i even cannot tell when or sometimes if it hurts.ondr. naths site it says they do not do the surgery for people that have had it for over 5 years. so, i consider myself unfortunate
good luck in your surgery.

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Re: bpi/winged scapula

Post by admin » Sat Dec 24, 2005 2:09 pm

> My winging scapular was diagnosed at the age of 20,
> (now26) after a long while of seeing different
> professionals since the age of 18, u see I grow up
> with it but didn?t really know there was a problem,
> they think I could have been born like it or a viral
> infection damaged the nerve.
> I had all the tests xrays mri scanx and Emg, and my
> orthopaedic surgeon want ed to see if the nerve was
> compressed hence the decompression which I had in Jan
> of this year.

what surgery is this decomprssion surgry called in detail

He wasn?t that hopeful that he would
> find anything or even if it would work but it was
> worth a sort has the pec transfer is a big op,
> basically he wanted to explore all avenues.
> The operation went well but it?s been eight months
> with no improvement.
>
> I know what you mean I?m limited to doing so little
> and when I do something, even like cutting the hedge
> I suffer so bad for days afterwards, my back has also
> suffered due to me only carrying my baby on one side,
> he is four now.
>
> Speak soon
> James uk


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Re: bpi/winged scapula

Post by admin » Mon Dec 26, 2005 3:25 pm

thanks to all of you that have responded on this web site, after three years of pain i now know what is wrong with me. i am not sure what caused it, perhaps weight lifting or one of several falls, in any case i started feeling sore for a of couple days then one morning i woke up and was in unbeleaveable pain. i always have a sore back (left side) and will get what i call a severe disabling attack that last for several weeks. the attacks come every six to eight months apart. oh ya, cervical spinal fusion does not help so don't be led there. luck to all, thanks again

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