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.:wink:

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.:rolleyes:

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!!!!

I would be very interested to hear how things go with your situation. I pray you are getting answers and help.
Dee

Thank you for your support...
 

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

:Dancing-Chilli: Ok, I LOVE the dancing chili pepper!!!!!!

God Bless!!!

Dee

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

**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! :winky:

God Bless you all!!!

Dawn

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*

dr
 

Rogue do you go to Dr. Ellenbogan ?

Heya's Gang!!!
 

Ok, sorry I been out.... last week was the week from heck apparantly. Started off with a 3 day migraine (par for the course actually), had done "Christmas Cleaning" the week before, and I know... I KNOW... I shoulda taken it easier, but the floors HAD to be scrubbed, and the linens done, and table clothes gotten outta mothballs and decorations and all the whatnots, ya know? Hubby is a down right scrooge when it comes to the holidays, so iffin the kiddos get a Christmas, its up to me to get the house set to rights so they can have it.

So I figgured, get it done, deal with the migrain all the bending stooping stretching, stress and detergent fumes will be bound to cause, then have about a week before the kiddos get out of school to finish up all the left-over necessities, right? Well, I didnt figgure in a nice little jaw infection that was gonna rear its ugly head on the heels of the migraine. So yep, after dosing out on tylenol and naproxen for 3 days, I had to start in on Keflex (sp?) 4 times a day, and Tylenol for pain every four hours, cool compresses to deal with swelling (face still looks like I lost a fight with Mike Tyson *blushes*). But least I'm back to feeling what passes for normal for me these days, LOL.

But let us consider, that the house I busted my butt on for a week, now has gone a week WITHOUT a females influence, and with a Man, a Teenager, and a preschooler, totally going hog wild cooped inside it. Yep, you got it, this place should be condemmed at this point. The garland on the mantle looks like a herd of wild bores tore through it, and apparantly I strove to do the lest possible with still doing something, because it looks like I have about a months worth of clean laundry to get folded up. Wash it, dry it, and put it in a basket was the key to last week, they had clean clothes at least, right? Well, I dont handle that well, so I'mma have to get started on it soon as I get off here. God made closets for a reason, you know? LOL.

Thankyou so much for the concern, Rogue. I'm so very glad to hear that your news came back good!!!!! *does happy dance* Still keeping ya in thoughts and prayers tho, hon, cause I know ya be having other issues mentioned previously. We all need all the help we can get, right? *winks*

Got a call from the optho who ordered the MRI, and apparantly the lil ninny that hubby talked to (we'll call her that in lieu of being nice and polite, ok?) didnt have the authorization to be giving hubby any information about the MRI results in the first place. Hubby said Dr. Rynerson seemed a little miffed about the whole situation with her *shrugs shoulders*. Anywho, he wants to see us personally to discuss the results on Jan. 2. Hubby said the the doc says there are some 'questionable' results on the report. *points finger* TOLD YA that heiffer didnt know what she was talking about!!!! *calms down a bit*

Now, about the SS deal. hubby talked to the DDS Examiner, just to make sure there wasnt anything else he needed before the Christmas break. (Seems to me that he and hubby have built up a slight repetoire since Oct., not sure if that's good or bad :O) Anyway, he was told this last time, that the case looks good, they have everything they need, and that the case will be going before "the board" after Christmas, and we should know something by or before Jan 26th. So, not sure how its gonna play out, can keep fingers crossed till then I guess LOL.

But nah, I know that very few cases get approved the first go around, so not having extremely inflated hopes, but just anxious, I guess.

Will keep thinking about all of ya'll, God Bless you and Yours!!!

Dawn

Just an update, things moving along.
 

My initial application for SSI was approved couple weeks ago. Got my backpay credited to my account as of today. Still waiting on the official award letter though. Kiddos have been ill the past couple weeks. Kathryn had pneumonia and was confined to the house for a week (five year olds on bedrest are NOT happy campers) Kris came down with strep, double ear infection, and bronchitis on Saturday, but will be going back to school tommorow (whew). I'm ready to have the house to myself for a few hours tommorow!!!! LOL.

Personally, its been a fairly good, if draining couple of weeks. I guess its a high from getting disability approved. DH said not to get used to it, cause wont be long till the euphoria wears off, and it'll all come crashing down on me. Am keeping fingers crossed that the award letter is soon comming, cause I've been advised by my initial-case worker to not start making appointments until I have the paperwork in hand, cause there might be stipulations on who to see and when and where. I have been assigned a "Future Worker" to contact when the initial award comes in.

Had mentioned being interested in Vocational Rehabilitation, and I believe this "Future Worker" is a case evaluator type, who will be the one to organize the doctor and psychiatric visits to work toward ability to get back into the work-force.

Like I told them, I think I'm fixable, I just need help getting fixed LOLOLOL. Hopefully now we're on the way. Keeping my fingers crossed and my chin up!!!:D

God Bless us EVERYONE!!!!

Dawn