Success story

[Guest guest]

Hi everyone

I'm going to apologize right now about how long this is. I'm sorry

I just thought it was important that my success story be written.

First I just want to say " thank you " for all the advice, help,

ideas, sentiments, and listening that all of you have done and

shared with me. I know that you have all helped me through this

very difficult last year and I only hope that I can repay that help

with some of my own. I also want to say that there were days I

didn't know how I'd get though and you all were there. Thank you so

much!!

I have not posted for awhile and I've been saying that my success

story would be posted soon, so here goes.

Last July 21, 2001 I sustained a moderate concussion and severe

whiplash injury when I hit my head on a wooden beam while at work.

I had horrible horrible pressure headaches and optical headaches

start up the day I hit my head. At first I thought that it was just

muscle soreness and stress so I took Tynelol every 6 hours. After 3

weeks the Tynelol was doing no good at all and my neck locked up.

I started seeing a chiropracter who I dearly trust and I received

some relief from the neck and shoulder pain, but nothing seemed to

be working for the headaches. After two months of chiropractic care

where I only seemed to get worse I began seeing a physical therapist

who started using cervical traction.

A day after the cervical traction, my right hand went numb and my

right arm started tingling. A day later my right arm locked up and

I couldn't move it. My neck also would not move well and the

headaches were horrible. Not only did I have the pressure at the

base of my skull, but know I was getting horrible pain radiating up

towards my eyes and at times behind my eyes. I was also beginning

to have trouble focusing.

Well, in November, 2001 the worker's compensation doctor ordered an

MRI. The results came back showing a herniated disk at the C3-4

level on the left side and 8 mm of tonsil herniation indicative of

Arnold Chiari Malformation I.

That doctor told me that some of symptoms may be coming from the

Chiari but that it wouldn't have been related to my injury and

therefore he didn't know how to treat me so he sent me to another

doctor for his opinion.

Well this doctor was a pain management doctor and did not believe

any of my symptoms were due to the Chiari. In fact his statement

was that I had Chronic Fatigue Syndrome, depression, and that a lot

of the pain was in my head and not as bad as I was saying it was.

He also sent me to a physical therapist and refused my requests to

see a neurosurgeon.

Well to make a very long story short, I started getting worse and

worse. I started having horrible vision problems and radiating pain

in my back, arms, and head. I started getting dizzy and having

black out episodes. I couldn't sleep and I began to have problems

with my stomach because of all the medication. My eyes would not

focus and I was unable to read things. My concentration was also

non-existent and it was a chore just to get out of bed.

I started doing research on my own and located this website. I also

found out that a well known Chiari doctor in Columbia, MO knew my

Aunt, who also lives there. I began to talk to my Aunt about the

Chiari and about Dr. Oro. My Aunt could not say enough good things

about him or his staff.

My Aunt is a neuro-pathologist there at the University of Missouri

and said that she had been to quite a few of Dr. Oro's seminars. I

sent my records and MRI films to my Aunt who delivered them to Dr.

Oro in May.

In June, Dr. Oro advised my Aunt that my case sounded very similar

to a lot of his patients where they got shuffled around from one

doctor to the next and put on numerous medications. He also

informed my Aunt that I definitely had crowding and a restriction of

the spinal fluid flow. He confirmed that my tonsils were herniated

at least 8 mm and that he would like to see me for an evaluation.

Along with informing my Aunt about all of this, his nurse contacted

me personally and filled me in. It was such a relief to talk to

someone who actually believed me and gave me hope that it could be

fixed and I could get back my life!!!

In August of 2002 a little over a year from my injury I started

having a lot of dizziness and was having problems walking. I also

began having problems sleeping. Anytime pressure was applied to the

back of my neck I began to feel as though I was being strangled and

I could not breathe.

In September 2002 I finally told worker's compesenation that I was

seeking my own doctor and would seek a lawsuit against them after my

recovery. I saw Dr. Oro for an evaluation on September 3rd. Dr.

Oro did believe that I was a candidate for surgery and that the

surgery would help me. He did not state that it would cure me or

fix the problem just that it would help and hopefully would stop the

progression of the symptoms.

Dr. Oro also ordered an opcipital nerve block. He stated that if

the opcipital neurolgia was being aggravated by the Chiari the nerve

block may or may not work. Well needless to say the nerve block

worked for 3-4 days and then the headaches came back just as bad.

The pressure headaches were even worse and the pain from the block

was horrible. I would definitely not suggest one

I scheduled my surgery for October 21, 2002. I am soooo

thankful!!! I feel so good and so relieved to have my life back.

Dr. Oro had initially told me that he did not believe he'd have to

shrink my tonsils, however he would not know until he got in there.

He informed my family that it would probably only take 2 1/2 hours

to do the decompression surgery. He had spent that long explaining

it to me in September and then spent another hour with my Mom and

Aunt

Anyway at 2 1/2 hours he came out into the waiting room and said

that it would be at least another 40 minutes but that everything was

going fine. Well the 40 minutes went by and than another hour and

than another 45 minutes. Needless to say my boyfriend was getting

pretty worried as was my family when he finally came out.

He told them I was in the recovery room and they would be able to

see me shortly. He stated that he had to do more work than he had

originally thought. He informed them that my right tonsil was

wrapped around the PICA artery so he had to shrink that one quite a

bit. He stated that the artery had cut a groove into the tonsil due

to the pressure. He also stated that he had to shrink the left

tonsil due to it being elongated and pressing downward into the

spinal column.

He next informed them that my cerebellum had actually been blocking

the spinal fluid from coming behind it and therefore the pressure on

the dura lining had thinned it. He stated that when he'd patched

the dura using my pericranium the lining had been too thin so he had

to double patch it using some of my neck muscles. He stated that

was what had taken the extra hour and 45 minutes.

By this time I was being ushered into my room and my family came in

to see me and explained it all to me. Of course I do not remember

any of that. I remember Dr. Oro explaining it all to me the next

day but don't remember much about Monday night. What I do remember

is that I went into surgery with a horrible headache, pain in my

leg, tailbone, trouble seeing, and a numb right hand.

I woke up from surgery in no pain and could see!! :) I couldn't

believe it!! My hand wasn't numb, it wasn't even tingling and my

headahces were gone. My vision was WOW!! I could actually focus on

things. It was amazing!! I thought at first that maybe it was from

the medicine, however we found out on Tuesday that I was allergic to

every bit of pain medication they could give me.

So on Wednesday I was told to take Tynelol every 5 hours, an Aleve

twice a day, and the Flexeril every 8 hours. I was discharged on

Thursday and went to my Aunt's house there in Columbia.

On Tuesday the day after surgery I was up walking circles around ICU

so they moved me up to me own room that afternoon. I did have to

have the Toradal every 6 hours for the incision pain, but that was

the only pain I had. It was so different and so amazing!!

For the first month after the surgery I took things real slow. I

couldn't move my neck real fast and I couldn't move myself real

fast. I was told to refrain from sexual activity for at least 4 - 6

weeks but I didn't wait quite that long and it didn't hurt me a bit,

though my boyfriend tends to be very gentle and was especially so

during that first month.

I did not go back to work until after 6 weeks and then I only went

back to 4-6 hour days four days a week. I gradually increased that

until I am now working 8 hour days four days a week. I was just

released to go to my 10 hour days four days a week, but I can not

lift over 10 lbs and can not do anything strenous, which means since

I'm a police officer I can not do any uniform work. That's okay

though because the 8 hour days are pretty well wiping me out. I've

decided I'm going to hold off on the 10 hour days for at least a

couple more weeks.

I have not had any vision problems!

I have not had any pressure headaches!!

I have not had any ocipital headaches!!

I only got dizzy the first 6 weeks when I did too much.

I will still get some tingling in my hand if I'm lifting too much

during the day or doing too much, but that is subsiding every week.

Occassionally if I bend over too fast or run up the stairs I can

feel the pressure build up in my head, but than as soon as I stop

it goes away.

My tiredness is slowly going away and I'm up to walking 3-5 miles a

day

My neck is still stiff if I do too much and I have muscle knots, but

my physical therapist works on all that 2x a week and is amazed at

how much better I am now than I was when he started seeing me at 5

weeks.

I am on no prescription medication and have not been on any for the

last 3 weeks. Occasionally I will take an Aleve at night when I

know that I've worked my arms and neck a lot for muscle stiffness.

I am 150% better than I was prior to surgery!! I am not at a 100%

yet, but I am slowly getting closer. I may not be able to do all

the things that I was able to do prior to my injury, but I can sure

do at least 90% of them.

Prior to surgery I could not even do 5% of the things I once could,

so I would not take back my decision for the surgery.

I know on this site a lot of you have had problems and ended up

having surgery after surgery and my prayers go out to you. I know

how horrible it is to wake up every day in pain.

In addition to those of you who have had the surgery, there are many

of you out there who have not had the surgery and I have seen many

questions and concerns because some of you only see negative

postings.

I know that this is very long and I'm sorry. I just hope that all

of you were able to get though it and that it gives some of hope

that things can and will get better.

I'm available for any questions, please don't hesitate to email me

and best of luck to all of you!!!

Lots of love, prayers, and hugs,

Amy (Boise, ID)