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BARBGEO's Photo BARBGEO Posts: 784
1/5/10 10:37 A

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Hi folks,

One thing that I have learned, is that the GOOD doctors tend to know one another. Whether they meet at some conference or whatever, I don't know. It is HARD to get into see them, but it is worth it. I would call an office of a good one -- and ask if there is one locally who would be good.

I have found most neuros to be extremely stuck up. And when I am feeling icky, and sick, I don't need their attitude. I finally have gotten to a point where I have told them that. I am a PERSON not a file folder!

Good luck!!!
Barb

All the best,
Barb G


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KNGS_KID Posts: 4
1/4/10 8:46 A

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Working through the grief is hard, I was shocked when I was told because I was not prepared, I had been told that I had a clean MRI the week before (radioloist report and Neuro-opthalmologist missed it) and many docs including that surgeon, say its too small...but symptom wise Its destroying not just me but my family...

I focus on small successes now...I do not exercise, I am proud of myself when I can stand long enough to do a load of dishes, or walk to the bathroom without needing the walls, or go a week without falling (I haven't had that in a while)

My diet is where I have to focus...Because I have to make a concious effort to eat as healthy as I can since I can't burn those calories off like a normal person.

The good doctors are far and few between, New York, Wisconsin, and Colorado have the best but I am hoping to see a local one and explain that I don't want to travel (a half hour trip to see my pulmonologist is too far, I can't imagine a 6-12 hour trip or more to a doc) But THEY have experience and know exactly what they are doing...

I don't offer sympathy, But I do offer a listening ear, Learn as much as you can, having the more rare conditions means you have to teach your doc, and advocate for yourself...Don't get angry unless you channel it to make you stronger, otherwise, it just hurts you. I have to fight, because they don't...but These things will NOT control me.

TEARSFORGLORY88's Photo TEARSFORGLORY88 Posts: 37
1/3/10 3:41 P

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I was just diagnosed with Arnold Chiari Brain Malformation a couple of months ago and my doc doesn't know anything about it, so I have to find a neurologist. I feel alone bc Chiari is so rare, no one knows what it is and they think I am making it up and the people at work don't understand how bad I feel. It is so hard to do physically demanding work everyday when you have spasms, and nerve pain, and the room spins and a constant ringing in the ears, and all kinds of other lovely symptoms I get to deal with. I am still bitter as you can tell, and I am scared and frustrated and I don't want sympathy, I just want someone to understand me and not think I am a hypochondriac.

Every Small Victory Builds a Foundation For a Larger One :D


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KNGS_KID Posts: 4
1/2/10 2:09 P

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The brain is a very insteresting thing to me, I have had headaches since I was 12, so I learned about the stuff I was going through before it ever had a name.

Chiari causes balance issues, sleep apnea (respiratory distress) drop attacks, falling, clumsiness, memory issues, headaches, all the things associated with fibromyalgia, and is often misdiagnosed...

In the PTC, (Pseudotumor Cerebri or Intracranial Hypertension, they have a group here for that, but since I have both and most people definitely don't have both together or understand both I figured here might be better, people with other brain issues generally tend to be more compassionate and understanding when their brains malfunction too)

My body produces too much spinalfluid, squishing my brain and squeezing it through the foraman magnum down into the spinal cord (ok that puts the two conditions together and how they are connected) my left leg is also semi paralyzed because of these too...and I am homeshooling my daughter despite all of this and going to college, I REFUSE to lose these battles...weight is just one of the many battles I struggle with daily.
Charlotte

BARBGEO's Photo BARBGEO Posts: 784
1/2/10 11:54 A

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Welcome and HELLO!!!

I cannot imagine having a young child after my brain injury. What a challenge. My youngest was 15 when I was hurt, and while the teen years are in themselves challenging, she was a wonderful help and support. We are very close now. We had our moments though!

We are here for you. Not all of us (me-grin) know what you are dealing with exactly... can you explain it a bit? No matter what the issue is though, we are HERE TO SUPPORT ONE ANOTHER!

THANKS FOR JOINING US!

All the best,
Barb G


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KNGS_KID Posts: 4
1/2/10 10:45 A

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I have had the PTC officially 11 years, but tests say unofficially almost 20. The Chiari I was diagnosed with 2 years ago when my Shunt failed and a second opinion was ordered.

Losing weight is really challenging when even walking is a challenge. But I have a Husband and a 7 year old that I homeschool that need a wife and a mom. They can't very well have a mom who can't function, so I need to get as healthy as I can under the circumstances.

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