Pissed off (am I allowed to say that?)

What a fantastic Chiari and Syringomyelia conference!!

Dr. I did a great job organizing it!

Thank you!!

I must say, I came home after 3 long days of lectures with my brain FRIED! Not just because of all the intense info that we learned, but it was very emotional as well. First of, the population that was at the conference wasn't what I was expecting. I was expecting to see all sort of parents, but that wasn't the case. Actually, their wasn't much of that at all. Most of the population was probably in their 50's and older. Most of them suffering themselves. Some in wheelchairs, some using walkers, some with braces on their legs, Some whom you could tell had their vertebrae fused, and some even with service dogs. Let me tell you, it put a huge LUMP in my throat!! To think that could be MY children when they get older, or could it be??

We learned about everything from Definitions, concepts, and treatments, to Neuropsychological issues, to Occult spinal dysraphism, to complex chiari: to fuse or not to fuse, to Pain management, to Genetics, to Hydrocephalus and shunts, to Audio-vestibular dysfunctions. EEK!!!

It was a very emotional conference. Its hard not to think of your own children while they are talking about the same issues you children have. A lot of people tried to make this conference personal, but the NSG wouldn't allow it. If you started to ask a personal question about your own issues, they shut you down and asked that you talk to them privately and not in front of the the whole audience.

Chiari and Syringomyelia affect everyone differently - no two stories are the same. So when the NSG talked to you it had to be in "general terms".

On Saturday morning we got to meet the CEO of ASAP and he showed us his power point that I do believe pissed a few people off. Mike showed us a chart that showed which conditions (population affected) were receiving funding for research and out of the 15 - 20 conditions he put up, guess which one was at the bottom? You guessed it ~ Chiari & Syringomyelia!! We have a whopping population of close to 300,000 people who are affected by these conditions and we are receiving ZERO funding to help find a cure. See why it pissed people off????

Here are some of the symptoms of Syringomyelia:
Symptoms develop slowly over time, but can come on suddenly after a fall or minor trauma. Sensation may be affected first. Some common symptoms include:

•Loss of sensitivity to hot and cold
•Numbness and tingling
•Bowel and bladder function may be affected
•Muscle weakness
•Paralysis (in severe cases, quadriplegia)

Scoliosis may be the only symptom in children. Often people with scoliosis undergo spinal MR imaging because of an atypical left-sided thoracic curve.

Here are some of the Chiari 1 Malformation symptoms:

Headaches, often severe, are the classic symptom of Chiari malformation. They're typically precipitated with sudden coughing, sneezing or straining. People with Chiari malformation type I also can experience:

■Neck pain (running down the shoulders at times)
■Unsteady gait (problems with balance)
■Poor hand coordination (fine motor skills)
■Numbness and tingling of the hands and feet
■Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
■Vision problems (blurred or double vision)
■Slurred speech
Less often, people with Chiari malformation may experience:

■Ringing or buzzing in the ears (tinnitus)
■Poor bladder control
■Chest pain, in a band-like pattern around the chest
■Curvature of the spine (scoliosis) related to spinal cord impairment
■Abnormal breathing — specifically, sleep apnea characterized by periods of breathing cessation during sleep

Don't you think that people with this condition deserve to be able to find a cure????

October 10th is "Collect for a cure"day nation wide. Please let me know if you would be interested in standing with us and collecting coins and handing out information. We need to find a cure. I don't want my 3 children or anyone elses ending up in a wheelchair, walker, or worse......


tish said...

Send a link to this blog post to President Obama and/or Michelle.

Open your e-mail with the link with a brief paragraph about your 4 children and the many doctors you have consulted. Brief and succinct.

Then direct them to your blog in particular, your link to this post.


tish said...

Better yet -- send it to state and federal Wisconsin senators and reps as well.

Anonymous said...

wow, I couldn't have said it any better. In fact, I would like permission to copy and paste it into Jacob's carringbridge page. lol.

I am with you sister. Through thick and thin. Hoping soon we get to see the light at the end of the tunnel though. It has to be there, right?