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Old 11-13-2007, 03:48 AM #1
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Wink My Chiari Experiance

Morning/Afternoon/Evening/Night!!!

I must admit, I am so glad to have found this forum. I hope that my experiance might be able to help someone else with this condition.... or maybe we can just cry together (I do that alot LOL). This might be kinda long, though, so ya may wanna grab a cuppa coffee or some tea or something to tide ya over.

In January of 2000, I was putting Christmas decorations up in the attic and, and wound up loosing my balance due to a dizzy spell, although I didnt wind up falling, I felt a sharp pain in my hip and thought, ut oh, pulled a muscle. Didnt think twice about it, though. A few days later, I started feeling extremely fatigued, even after a good nights sleep, and having been anemic in the past, made an appointment with my GP to get it checked out. The blood test came out normal, but she went ahead and put me on iron tablets and Vitamen C supplement, just to be on the safe side. After a couple weeks, I was still having problems with just being so very, very tired, and went back. She didnt know what else to do, and decided to put me on prenatal vitamens.

About a month after this, I got a case of SEVERE tendonitis at work. My GP was on vacation at the time, so I ended up going to a different GP. After dx'ing the tendonitis, I told him about the extreme tiredness, and a seeming lack of strength in my arms, and unsteadyness in my legs. He directed me to two different specialists, a orthopedist and a neurologist. The orthopedist was first, and did a X-ray and CT of my spine and an EMG of both arms. He said I was suffering from Carpal Tunnel and suggested surgery on both wrists to correct the problem. Hubby and I decided to wait and see what the neuro said before commiting to THAT surgery.

The appointment for the neuro was about 3 weeks later. In that time, my symptoms had progressed to a list that was starting to really scare us. I had started having HORRIBLE migrains, numbness and tingling in my neck, shoulders, arms, and back, trouble walking, and craziest of all, was the fact that I'd lost feeling in my feet and the tips of my fingers. After ALOT of neurological tests at the initial appointment, he told us there were only 3 more things he wanted to do before making a diagnosis, a blood test to rule out Parkensons, another EMG and an NCV, and a head and neck MRI.

When the results came back, he told us that I had Chiari Type 1 Malformation. And suggested that we immediately consult with a neuro-surgeon from Vanderbilt. Two weeks later, we were informed that unless the pressure was reduced, that at the rate of neurological degeneration I was experiancing, we could expect neurological problems to start affecting "life sustaining organs" within a 6 month period. That was a Thursday, and I was scheduled for surgery the following Monday. I was released from St. Thomas the Wednesday after surgery, and have no memory of the next two weeks. Until this time, I had been in the hospital only to deliver my son, and was extremely adverse to taking medication. Upon leaving the hospital, I had a bag of prescriptions including muscle relaxers, pain killers, neuro blockers, and anti-seisure medication of some kind, and prednisone.

Apparantly at release I absolutely refused to wear a halo, and hubby was given strict instructions about my schedule of being up and laying down. The first 2 weeks were nothing but bedrest, the third week I could get up for like 15 minutes 4 times a day, fourth week 30 minutes 4 times a day, and etc. over the next 2 months. For the first 3 weeks hubby was told I was NOT to be left alone under any circumstances. Three months post-op, against advice of friends, family AND neuro, I started back to work.

Two years post-op, I quit work do to pain and fatigue and about 8 months later gave birth to my daughter Kathryn, who is now a boisterous 4 year old, gonna be 5 in December. Once I had gotten over the actual surgical procedure, I have residual nerve damage in the back of my head, neck, shoulders, arms and hands, which cause a constant dull ache. I also have dx'ed myofascial pain on even minor exertion and extreme fatigue, with major stress and tension headaches.

About 1 1/2 to 2 years ago, I noticed a major change in my visual acuity and comprehension skills. After 5 different opthamologists, I recently found someone who would hazard a guess that my visual problems might be related to the Chiari Malformation, or subsequent problem. He ordered a head MRI which I just had today, erm, yesterday looking at the clock.

We have recently begun the process of applying for SSA and SSI. So, that is my story so far. Thankyou all for you patience reading this, and I hope that someone might be able to use this in some way.

God Bless you all!!!!
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Old 11-13-2007, 09:49 PM #2
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I would be very interested to hear how things go with your situation. I pray you are getting answers and help.
Dee
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Old 11-14-2007, 01:54 AM #3
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Default Thank you for your support...

I'll be sure to keep all up to date!

Ok, I LOVE the dancing chili pepper!!!!!!

God Bless!!!

Dee
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Old 11-20-2007, 01:10 PM #4
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Default An Update

Well hubby called about my MRI results yesterday, as we STILL hadnt heard anything from the optho. Apparantly he talked to some type of internist, or something. Cause the first call he made, he told me that she said everything looked normal. I just stared at him. Then I asked him, "How can everything look NORMAL, when I've had brain surgery, and the neuro-surgeon AND neurologist had told us that there had been permanent nerve damage to some nerve in the area of the occipital area (I dont wanna say the occipital nerve, cause I dont remember exactly what they said at the time) which was just a part of where they had to cut during the surgery, so I'd have the 'wearing a football helmet stuffed full of cotton balls' feeling for the rest of my life.?"

He agreed with me that it didnt make much sense, so he called them back. The same girl talked to him, and stated that oh yes, they could see the surgery site, but they could also see all the way into the THORACIC cavity, and everything looked normal. Now, all I was scheduled for was a head MRI, not even a cervical. How could they possibly see into the thoracic cavity on the films???? Now, not being THAT familiar with MRI protocals, I called my best friend today, before making a fool of myself or my husband. She is a registered MRI/CT Technician, to ask her about the protocals for a head MRI. She agreed, that a head MRI, if performed correctly, and at the right angles, can produce a good image of the C-1 and even possibly the C-2 area, however, there was no way to get any images of the thoracic cavity with a properly performed head MRI. So we're all three fairly confident that this gal here dont have much of an idea what she's talking about.

So now, even with "results" I'm still waiting to hear the results of the results. *sighs*

God Bless you all!!!!

Dawn
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Old 11-26-2007, 02:15 PM #5
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Oh wow, that sucks! I've been through that sort of stuff myself, with my rsd/crps. This last neurologist, the one I was not happy with, also said I didn't have rsd!! I have been seeing specialists for almost 15 years now. I've been part of gov't trial studies of meds, etc. It's hard to have faith in dr.s and techs when they say such ridiculous stuff.

I'll keep my fingers crossed for you, MorningBroken. I'll also keep reading, lol. I want to see what I am up against in the future.

The only "advantage" I can see that I have is that I have aids, so I won't have to live with all these other diseases for forever, lol!

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Old 11-29-2007, 03:34 AM #6
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Default **huggs Rogue**

well, sweetie, we all have our demons of one type or another, I've always said.

Hubby and I are trying to decide whether to consult with my old neuro about this. He's good, he's thorough, but just an office visit is like $120!!!! And that's with no tests or anything. With not having any insurance, I'm definately gonna have to wait till after the x-mas season. (Both kiddos have birthdays in Dec. as well as the Christmas thing), so money is tight... and we just set up a payment plan for the cost of the MRI its self.

Ah well, the things ya gotta do to be able to do the things ya gotta do!

God Bless you all!!!

Dawn
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Old 12-04-2007, 01:18 AM #7
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Default Oh, totally forgot something about the MRI

I led myself into some kinda delusion, apparantly. I had spastically forgotten about the concept of insurance when I'd last had my MRI back in 2001-2. But I remembered that tween the brain and cervical scans, the total bill had come to about 1400 dollars. So we had planned on making minor monthly payments till tax return came in, and then we'd pay off the bill, right?

OHHHHH SOOOOO WRONG!!!

The bill pert near dropped me when I opened it. Apparantly without insurance, a single MRI of the brain costs..... are you ready for this????


3500!!!!

Needless to say, its gonna take us a lil bit longer than previously expected to get THAT bill paid off. *sighs*

God bless you and yours!!!

Dawn

PS - Still nothing from Social Security, but its only been a little over a month, so still playing a waiting game with that one *takes deep breaths*
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Old 12-09-2007, 02:07 PM #8
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MB, wow, that's expensive! I'm sorry you have to pay for it yourself, that sucks. Have you applied for Medicaid? If you get into the program, they'll even go retroactive up to a year I think, or maybe only six months, but anyway, they'll help pay your back-dated bills.

If it weren't for that program, I'd already be dead from aids. I take many thousands of dollars a month in medicines alone. (I hate being a burden on the taxpayers, but my parents put many hundreds of thousands of dollars into the system, so they told me not to feel so bad, lol).

Your health is most important, though. I know it'll be expensive, but I think going back to the neuro you like and trust is vital. This other quack is doing you no good, from what I can tell.

Good and bad news on my case... the dr. called with the results. The worst part is that I had to ask about the ACM results, cuz he was too busy discussing another subject.

He called to tell me that he needs to schedule another mri a.s.a.p., one with "thinner slices". Apparently, they found a spot on my brain that is "of great concern to them".

I was scheduled to see him on Wed., but I guess that will change if I don't get the new mri done by then. As urgent as he made it sound, though, I'm pretty sure they'll have it done by Tues. Oh, and when they tell you it will take 24-48 hours for the test results to be available, they LIE. My dr. called me within hours of the mri being done.

He scared me, to be honest. Aids hasn't scared me, the thought of dying doesn't scare me... but this does. I know there's always a chance that it may be nothing, but from the speed he wants the test done, as well as his tone of voice, that seems unlikely. Plus, when I asked about the malformation, he said it "isn't important right now", which seems ominous.

Ah well, we all have our crosses to bear, I guess. It just seems, sometimes, that I'm carrying more than my fair share.

I hate to scare you, or put a damper on your optimism, but... SS can sometimes take YEARS to get. Even if they say yes right off the bat, it can take them up to six months to start paying you and give you medicaid/medicare. You will also qualify for food stamps at that point.

They make you jump through many hoops. One big one is that soon you will receive a letter saying they have set you up an appt. with a psychologist. It seems to be standard fare with them. What you say during that appt. will have a major impact on whether or not they say "yes". There's a fine line you have to walk between letting the dr. know just how bad off you are, and being considered hysterical and overreacting.

They will most likely say "no" the first time out... you'll have to appeal the decision. They do that to weed out all the people who just want a free ride from those who are in need. Only the truly seriously ill are going to jump through all their hoops for months if not years.

Just keep bulldogging your way through them, honey. You'll get what you deserve eventually.

Best of luck, I'll pray and keep my fingers crossed.

Rogue

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Old 12-11-2007, 11:37 AM #9
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Rogue do you go to Dr. Ellenbogan ?
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Old 12-16-2007, 03:56 PM #10
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No Razzle, I don't... never heard that name before.

Well, tests are done, and the news is good. My acm isn't big enough to do anything about. And the spot on the mri they were so very worried about? They couldn't even find it on the 2nd scan! Scared the hell outta me for no reason, it appears.

Morning, how ya holding up? I worry about you.


Rogue

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