I have been diagnosed with Parsonage-Turner Syndrome

Treatments, Rehabilitation, and Recovery
robinj
Posts: 9
Joined: Sun Feb 24, 2008 3:33 pm

I have been diagnosed with Parsonage-Turner Syndrome

Post by robinj »

Hello all; About 1 year ago(Apr 12, 2007), I had an anterior cervical disc fusion of C5-6,6-7. The surgery seemed to go uneventful and I felt great for 1 week until I was awakened by excruciating pain in my upper left arm, mind you, I had pain in my right arm prior to surgery. The incision site is on my left neck. I was unable to move my left arm and had to go to the emergency room, where, of coarse, I was misdiagnosed and sent home. The following week, I saw my surgeon and he exclaimed"you have torn your rotator cuff"!!! MRI negative for that. Finally 3-4 weeks later, an EMG showed extreme nerve damage to infraspinatus, supraspinatus, bicep, deltoid, the exam was so painful, I don't think he got a great exam. The Dr. that did the exam literally looked like he had seen a ghost! Told me had maybe seen this 3 times out of 30,000 exams and sent me on my way. Still unable to move my arm, my surgeon informed me that because it was week after surgery that I must have contracted a virus( I had no symptoms of being ill).The drs have told me my nerves are not torn, I have regained movement, can lift my arm over my head, but it is very painful and irritating, also I have pretty severe wasting and possible winging. Do any of you know if because my brachial plexitis occured 1 week after surgery, that it couldn't possibly be a traction or stretch injury during surgery? The surgeon of coarse is saying absolutely NOT!!!I have tried PT but it throws me in to a frenzy. I have not even seen a neurologist as I am on workman's comp and second opinions are hard to come by. I have not worked in a YEAR! I am an ultrasonographer, I need both arms!!! I am also contemplating a lawsuit. Can anyone help me? Thanks so much!!!
Robin
mrstarmen

Re: I have been diagnosed with Parsonage-Turner Syndrome

Post by mrstarmen »

I thought this was interesting and perhaps useful sometimes for BPI...these lakes are located near chilca, Peru....120 miles south of Lima I believe.
It’s said that the lagoons cure everything from acne to rheumatism and boast plentiful cures. Ailing Peruvians arrive sick and in a short time set forth healed and revitalized.
The nutrient rich mud is applied to the skin as a natural peel that restores the cells of the skin and eliminates toxins. The secret of the cure is to bake in the sun, allowing the mud to thoroughly dry after utterly plying yourself from top to bottom with the medicinal muck.
The 3 Healing LagoonsThe “Lagoon of Miracles” which lies near the entrance of the town along with the mud ponds that surround it is said to heal skin aliments, acne, rheumatism, and arthritis with its distinct greenish colored mud containing minerals of chloride of sodium, sulfate, and carbonate of calcium.
The “Lagoon of Enchantment” is a crevasse in the interior of the lagoon linked directly with the sea by an underwater canal, sought after to heal ailments of the eyes, nerves, joints, and low blood pressure.
The “Lagoon of Mellicera” is believed to increase fertility and may be attributed for the unusually high birth rate of twins in the village. Locals use the lagoon to cure skin and bones aliments, and relief from diabetes.
UFO SightingsLocal doctors and scientists accredit these enigmatic and inexplicable healing properties to the UFO’s which have allegedly been sighted and well documented in the area that seemingly radiate the waters.
Mayor Ruma Nueda says, “Lots of people claim to have seen UFO’s and strange lights in the night sky over Chilca. People here believe in UFO’s.”
“Locals say that space ships come to harvest an unknown material from the [ocean] area off Chilca’s beach. The UFO’s supposedly leave behind substances that leach into the ponds and give them curative powers.”
“Townspeople cite an abundance of twins in Chilca — more than 100 pairs in this town of 10,000, as proof of the power of the ‘Twin Maker’ pond.” Nueda says.
A plethora of information can be found on the net claiming Peruvian sightings and film footage, with sites even dedicated to UFO’s in Peru.
Joshua Shapiro claims that that about 50% of Peruvians have either had a UFO experience or knew of someone who did. Some claim to have had a pleasant contact while others have not. In the more rural areas, UFO’s are accepted as real and nothing extraordinary
Aurelia
Posts: 40
Joined: Fri Sep 26, 2003 4:36 pm

I have been diagnosed with Parsonage-Turner Syndrome

Post by Aurelia »

If you can raise your arm above your head the deltoid must be working, I have heard of Brachial neuritis seems to be rare but with good recovery rates. I imagine you need to be doing vigorous PT to try and get those muscles from not wasting too much, dont know how you mean it throws you into a frenzy. PT didnt work for me but there was no pain, wonder is the pain a good thing as you seem to have some movement.
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: I have been diagnosed with Parsonage-Turner Syndrome

Post by marieke »

Treatment

No specific treatment has yet been proved efficient in PTS. In the early stages, pain may require treatment. Common analgesic drugs are usually sufficient. Usually, steroidal medications do not relieve the pain or improve muscle function in PTS. Rest is recommended, and immobilization of the affected upper extremity may be helpful in relieving the pain and in preventing stretching of the affected muscles.

As pain subsides, physical therapy is recommended. Passive range of motion exercises of the shoulder and elbow are suggested to maintain full range of motion.

Surgical stabilization of the scapula to the thorax, or tendon transfers have been performed with benefit in persons with PTS who experience continuing pain and muscle weakness.

Recovery and rehabilitation

Physical therapy should focus on the maintenance of full range of motion (ROM) in the shoulder and other affected joints. Passive range of motion (PROM) and active range of motion (AROM) exercises should begin as soon as the pain has been controlled adequately, followed by regional conditioning of the affected areas. Strengthening of the rotator cuff muscles and scapular stabilization may be indicated. Passive modalities (e.g., heat, cold, transcutaneous electrical nerve stimulation) may be useful as adjunct pain relievers.

Another type of rehabilitation therapy in PTS is occupational therapy. Functional conditioning of the upper extremity may be helpful. Assistive devices and orthotics (such as splints or devices for grasping and reaching) may be used, depending on the particular disabilities present.

http://www.healthline.com/galecontent/p ... r-syndrome
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
robinj
Posts: 9
Joined: Sun Feb 24, 2008 3:33 pm

Re: I have been diagnosed with Parsonage-Turner Syndrome

Post by robinj »

Aurelia, hi. When I say PT throws me in to a frenzy, I mean bed-ridden pain, my upper arm hardens and lumps up along with my pectoral muscle and I have to limit my arm motion, take pain meds etc...I guess there are some compensatory muscles taking over, but my injured nerves really get pissed off(this is not the kind of pain you work through, you have to wait till it calms down again, as ya'll well know). Why aren't more of us angry when it was obviously a positioning error in surgery that could have been avoided? I have read numerous anesthesia articles that state these errors are preventable with adequate positioning and padding and should be well documented during surgery. This issue seems to be brushed under the rug. Meanwhile my life has been severely affected! I have nothing but time on my hands and will do whatever it takes to bring this to the forefront!!!
mrstarmen

Re: I have been diagnosed with Parsonage-Turner Syndrome

Post by mrstarmen »

http://www.youtube.com/watch?v=qyA-mkOrye8

note the part in this utube film where it says he often treats the eye to fix other parts of body...and he actually is working on the eye.

http://www.youtube.com/watch?v=3CiSMWor ... re=related

http://www.youtube.com/watch?v=YbBRBIhR ... re=related

http://www.youtube.com/watch?v=iBU2fVS7 ... re=related
mrstarmen

Re: I have been diagnosed with Parsonage-Turner Syndrome

Post by mrstarmen »

This video shows John of God working on the left wrist area of a lady

http://www.youtube.com/watch?v=ePxtylJN ... re=related
robinj
Posts: 9
Joined: Sun Feb 24, 2008 3:33 pm

Re: I have been diagnosed with Parsonage-Turner Syndrome

Post by robinj »

Mr Starmen; Has anyone else on here been cured by mud or some kind of medicine man as you are suggesting? Obviously, you don't have this injury or you would not be posting crap like that!!!
miserbank0312
Posts: 13
Joined: Fri Jan 12, 2007 5:12 pm

Re: I have been diagnosed with Parsonage-Turner Syndrome

Post by miserbank0312 »

Robin,
I had a similar situation 17 months ago. I had a 5 level cervical laminectomy and fusion. I am 46 years old and otherwise very healthy. I awoke from a 7 hour surgery (2 well respected neurosurgeons) and after a couple of days, noticed I couldn't lift my right arm. After two weeks they operated again to open a keyhole for C5 nerve. I had two EMGs and then sought out more specialists. I went to St. Louis to see Dr. Susan Mackinnon. She thought the nerve would come back over time. I then went to Dr. Spinner (5 mos. post op) at Mayo. He had an EMG and said nerves were damaged but may partially recover over time. 6 months post op, I had movement but little tricep strength. 8 months post op, back to Mayo for another EMG which showed no change (both sides are affected altho right more so than left). While I have nearly full range of motion, I can't bench press 20 lbs and can't lift anything over my head. I also have neuropathy in right index finger and thumb. No drugs help w/ the pain and I have tried them all. Spouse is a physician and we did everything we could think of and did a lot of research. Let me know if you have questions.
robinj
Posts: 9
Joined: Sun Feb 24, 2008 3:33 pm

Re: I have been diagnosed with Parsonage-Turner Syndrome

Post by robinj »

Thank you for your reply, in some kind of weird way, it helps to know that someone else is going through the same thing. I am just about a year now, have never seen a neurologist and now workman's comp is starting to put the pressure on me. I'm wondering if a brachial plexus MRI would shed some light on my situation. The thought of "light duty" makes me crazy with all this pain I'm having. I guess this entity is so misunderstood, that after a year, the insurance fairy is waving her magic wand and I'm supposed to be well. How can someone be well with damaged nerves? Anyway, I actually help build a snowman yesterday! What a great day! One day at a time, my friend! Again, thank you.
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