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For Those In Limbo Please Take A Look

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Old 05-04-2008, 06:45 AM   #1
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Join Date: Jul 2007
Location: brockton, ma, usa
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cindys601 HB User
For Those In Limbo Please Take A Look


So many people out here that know something is going on with our bodies and doctors just can't seem to find anything wrong. They look for MS, lyme, vitamin deficiencies, lupis among many other things. This is the approach that should be taken from a proffesional point of view.

But when everything comes up fine, the professional word begins to discredit us. They start labeling our symptoms with chronic fatigue and finally and most frusting is when the say its stress or anxiety. This can be the case too but lets face it, we all have stress in our lives. So they really need to look further in my opinion, to rule out other less common things, before they label us in this way.

My only advice to those of you on this path, is if you truly know something is happening with your body, and we know our bodies better than any doctor, don't give up hope, but keep searching. Be your own advocate, fight strong, but with dignity.

Let go of the stress in your life 1st of all because this increases your symptoms. Find something to focus on besides anxiety. Find a good group on the board that can help you walk through your frustrations. This has saved me!! With a clear head, you'll have better luck on your quest for answers!!

I wanted to share my story here because if it wasn't for another board members post, I never would have known what I know today. Knowledge is a beautiful thing...

My symptoms began in my early 20's, during the times of childbearing. I bagan having strange tingling that traveled down my arm and leg, only on my left side. I thought I was having a heart attack or stroke. I was going through a traumatic event in life so the dr was quick to diagnose this tingling as anxiety. And I excepted that for over a decade.

Then the tingling began traveling to other parts of my body. Fatigue just slammed me down. I had a brain fog feeling and was having trouble concentrating and finding words. I had extreme taccacardia, sleep apnea and bowl disfuntion. Then my legs started getting weak. Walking up stairs was horrible!! I thought the fatigue was causing this. other things started happening and a red flag went up that someting was happening. I went to 2 neurologists and my PCP but all of these professionals hit a dead end.

In the process of all this, I had MRI's and a lumbar puncture. This produced a headach so severe and has stayed with me until today. I became so weak, in pain and the only relief I get is sleep, which that is an unpleasant thing to because of the discomfort.

I then took out my MRI and started analizing this myself. Advice is to not do this but if I didn't, I would still be in Limbo, getting worse. I noticed my brain was lower than a normal brain. I brought this information to my PCP. He got very angry that I was looking at my own MRI.

I then took it to the neurologist that orderd the MRI and he opologized that he didn't see this himself because he just wasn't looking for it. He asked me if I was refering to Arnold Chiari Malformation. He was amazed that I had found this and agreed to have radiology take another look. A few days later, he called and confirmed my findings. But he said he wasn't sure if this would cause my symptoms.

But I had already done my research and yes, it could. I sceduled an appointment at the Chiari Institute in New York. There, they specialize in this "rare" brain disorder. But its really not rare. Its more common than we think. Its just unknown. Doctors don't know enough about this so they don't look for it. While in NY, I went for more tests and the radiologist there who is knowledgable of chiari said they pick it up alot in routine MRI's. But he said alot of the patients he see's going to TCI (The Chiari Institute) have found this on they're own doing research, because dr's give up.

So I went to TCI and I have Chiari and also a tethered cord. I will be heading to surgery soon and FINALLY can relax, except my diagnosis and feel validated and know I'm truly not crazy!! Its a great feeling.

I know this is long but I just want to get awareness out there. If I can help just 1 person, it will be worth it. Theres very little talk on this board about chiari so I figure I'll get the knowledge out there.

There are so many symptoms related to Chiari. You can find a form at TCI that shows the list. Here are a few...Either way, I wish all of you in limbo answers!! Take Care~ Cindy

Headaches in the base of your head that worsen when bending, straining, laughing or crying

pain radiate behind your eyes

Neck stiffness~ pain radiates into shoulders /arms

Light sensitivity~ Blurred vision~ double vision

Pressure in ears~ ringing~ sensitivity

Difficulty swallowing~ Sleep apnea

heart palpitations~ dizziness

Tingling~ numbness~ burning in extremities~ weakness~ stiffness

Bladder and bowel disfunction

Fatigue... And theres many more

I hope this is helful to someone out there!!

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Old 05-04-2008, 07:03 AM   #2
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Join Date: May 2007
Location: Ottawa, Ontario, Canada
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lynxgal HB User
Re: For Those In Limbo Please Take A Look

Excellent post Cindy!

I looked a Chari as well last year. I have some crowding but no herniation so the Neuro says that is not what is causing my symptoms.

Hopefully this post will help someone as there really is not much info about chari on these boards.
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

Old 05-04-2008, 07:11 AM   #3
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cindys601 HB User
Re: For Those In Limbo Please Take A Look

Hi Lynxgal~

The thing to remember about this is the herniation doesnt have to be long to cause symptoms. Crouding can cause them too. Most neurolists will say that if its not 5mm or more, it cant be the cause. But TCI says thats not the case. Mine is small but I had a cine MRI done which sees the flow of cerebal fluid around the brain and behind my brainstem I have little flow.

Not to dicredit your neurologist but unless he has knowledge of chiari, they tend to minimize things. Glad you enjoyed the post!!

Good luck to you!!~ Cindy

Old 05-04-2008, 10:53 PM   #4
Join Date: Apr 2008
Location: United States
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Nichole87 HB User
Re: For Those In Limbo Please Take A Look

Hi Cindys601,
Your story is so inspiring! Thank you for sharing!
I'm having some cognitive problems, which I think having gotten worse over the years.
I don't think I have any of the physical symptoms of Chiari though. Is it possible I might have this disorder? How did you get a hold of your MRI scans?

Old 05-05-2008, 03:13 AM   #5
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Location: brockton, ma, usa
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cindys601 HB User
Re: For Those In Limbo Please Take A Look

Hi Nicole~

I'm glad you enjoyed my story!!

As far as having Chiari, memory issues is just a small piece of this condition. You would definately have some physical things happening to your body as well. In my early stages of chiari, they were mild but they were definately there. As my symptoms have progressed, I live with pain daily.

To get a copy of your MRI, you go to where this was done and request a copy. Generally they give you a disc that you can view in your computer.

I saw your post on ADHD and I am going there now to respond to that as well. My daughter has ADHD and maybe I can offer some advice about that for you.

Have a great day!!


Old 05-15-2008, 08:27 PM   #6
Join Date: May 2008
Location: Lubbock, TX U.S.
Posts: 6
sherie55 HB User
Re: For Those In Limbo Please Take A Look

I just want to wish you all the best. You are being very brave. I have had brain surgery for a tumor on the brain stem (ependamoma sp?) It changed my life for the better, I think. However it was a hard thing to go through, to put my family through. Our lives are pretty much back to normal. It has been over six years. I speak with a french accent of sorts, which makes things interesting, since I'm from west Texas.
Good Luck, sherie

Old 05-16-2008, 05:07 AM   #7
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Join Date: Jul 2007
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cindys601 HB User
Re: For Those In Limbo Please Take A Look

Hi Sherie~

Brain surgery is quite a scary adventure. I'm so glad to hear it all worked out for you!! The biggest thing is if your in the hands of a neurosurgeon that you have trust in.

I'm so sorry for what your family had to go through. I'm sure that was difficult but it was worth it, I'm sure!!

I know I have a difficult road ahead but I'm not really afraid of going forward with surgery. I'm more afraid what would happen if I didn't. Though surgery isn't a cure for Chiari, it will help with the progression and thats enough for me!!

I wish you and your family healthy days ahead

Take care~ Cindy

Old 07-28-2008, 04:59 PM   #8
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cindys601 HB User
Re: For Those In Limbo Please Take A Look

I had posted this a long while back so I figured I'd bring this to the top again for others to see


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