Improving with Treatment

Surprising update on treatment what it might actually be improving. The neurologist increased the old time antidepressant that is not used for that anymore but to shrink swollen nerve ending. What we have seen with this medication is Chloe is able to open her mouth wider with each increase dose and also her left shoulder seems to be more even with her right and she is able to now swing her left arm like her right arm back and forth as she walks. Her intense pain from her migraines has lessen in intensity and she is able to describe them better. We have suspended physical therapy for now and watch how much the medication improves her abilities and headaches. We are  keeping her busy in the community and long walks. Each dose increase takes 2 weeks to see it full effect. Tens Unit she is still using 4 half hour sessions a day too, this seems to help and she likes it and asks for it when it is time to use it.
What possibly may of happen is the nerve in the neck from bulging disc area is decreasing in size allowing her to open her mouth, lessening the intensity of her headaches and not to cause her left shoulder to be higher then her right shoulder.

 Time will tell if we are right but it sure is promising. Chloe is the one handling the medication if she couldn't handle it we would not be this far. It is fun to be the observer/reporter.

Elusive disorder has a name " Trigeminal neuralgia"

Definition

By Mayo Clinic staff

Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. If you have trigeminal neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain.
You may initially experience short, mild attacks, but trigeminal neuralgia can progress, causing longer, more frequent bouts of searing pain. Trigeminal neuralgia affects women more often than men, and it's more likely to occur in people who are older than 50.

Because of the variety of treatment options available, having trigeminal neuralgia doesn't necessarily mean you're doomed to a life of pain. Doctors usually can effectively manage trigeminal neuralgia with medications, injections or surgery.

Right now for Chloe this tens unit seems to be the best form of treatment. This has been considered by others as behavior. Behavioral techniques help us get Chloe to explain the problem so we could finally be able to stop calling it the elusive disorder and it's actually name "Trigeminal Neuralgia". This has been a long and for Chloe painful journey from a floppy infant to confirmed bulging disc which probably caused the nerve issue is the timeline we had to uncover this problem.

Elusive Disorder with"Sciatica Like" symptoms

 Like the sciatic nerve pain Chloe has similar issues in her cervical nerve which comes out of her left side of her neck and shoulder to her left arm.

Treatment is a select pain management system "tens device" which delivers a low dose electric stimulation to the muscles in question shown to us by a physical therapist. Chloe is responding to the 4 half hours a day treatment positively and starting to ask for the treatment too. This is actually week one of treatment

Chloe experience these "sciatica like" symptoms but in her left side neck,shoulder and arm.

The symptoms of sciatica pain stem from impingement of the sciatic nerve which runs from the lower back area to the feet. What one feels is pain or a tingling sensation that starts in the upper buttocks then radiates toward the feet.

This maybe one of the causes of Floppy Infant since birth but it appears very treatable and took a long time to finally get the elusive symptoms straight. It interfered with muscle development and was unpredictable when she would get shots of pain through that region of her body. 

Cervical Convergence Theory

Just as I am beginning to promote the book, and now we have an explanation for Chloe's left side of her face neck and shoulder which when triggered can cause a whole lot of pain. The physical therapist who specializes in TMJ issues called it the above name but said it is treatable. He plans to give me information so I can pass it on when I understand it better. Chloe is now going through 20minutes 4 times a day of this tens device one of the probs is on her left jaw where it opens and closes the other is on the left side of her neck at the base. So far all treatment she is totally smiling after.. Stay tune!

Select Pain Management system

Timing is always amazing the device I am suppose to have Chloe use came by UPS. We are suppose to take it to the physical therapy session to get ideas how to use it. It is really nice when these things work out!

Happy 4th of July! Understanding and describing the problem!

Chloe with the medication to shrunk nerve ending now she can open her mouth 50% more then before but now she can only open her mouth about 50% what average person can. The Neurologist increase the medication to decrease nerve swelling and pain. She also referred us to a physical therapist who deals with TMJ issues. The left side of the face and left shoulder seem to be the problem area. We will keep you all posted on our progress!