A few questions from a rookie ACM 1...

[Guest guest]

Hi all,

I was recently diagnosed as having a 'mild' form of ACM 1. I have done some

research into this and found a few things that, to me, are interesting as well

as many more questions that I hope to have answered.

First of all, can head trauma bring on some, but not all symptoms of ACM 1? The

reason for this is that I had head trauma back in '96 and after that I have

experienced some rather intense fatigue as well as a lack of mental clarity. No

doctor I ever spoke with at that time could give me any sort of conclusive

answer (I had a CT scan, no mri, and I had not been diagnosed with ACM 1).

More recently, I was weightlifting a normal amount of weight for me and

experienced a flash of light in my eyes and a blinding headache (the worst pain

of my life, bar none) for several hours that has dulled somewhat but has not

gone away after a month. Just prior to this, I was getting more and more short

of breath (without doing anything...I'm 26 and in good physical condition) and

my fatigue was getting worse. Has anyone ever heard of ACM 1 diagnosees having

something like this? The doctors have done 3 MRIs and a CT scan for multiple

things and the only thing they found was the ACM 1 (all after my weightlifting

experience). My Neurosurgeon's opinion is that it was a straining headache.

I'm not so sure...

I don't like to doubt the professional opinions of doctors but I've recalled a

lot of things that I've experienced throughout my life that COULD be related to

ACM 1. These include extreme sensitivity to light (spawning headaches),

pressure behind my eyes (I'm an allergy sufferer and that is NOT what this

is...), inability to react/move quickly and some short term memory loss. I race

cars and I just can't even come close to driving hard on the street because it

has and does cause headaches from the jarring of the car on the road. My

Neurosurgeon has me taking Neurontin and it's just not working (600mg/day). I

don't know if I'm just thinking too much about this or what. Let me know if you

think so...

Anyway, if anyone out there has suggestions as to how to relieve symptoms or

advice on dealing with doctors or just advice to someone who wishes to get their

life back to normal, feel free to email me. I'd appreciate it! =)

Thanks in advance,

[Guest guest]

In a message dated 8/27/00 3:45:59 PM Central Daylight Time,

racer93@... writes:

<< Anyway, if anyone out there has suggestions as to how to relieve symptoms

or advice on dealing with doctors or just advice to someone who wishes to

get their life back to normal, feel free to email me. I'd appreciate it! =)

>>

Hello ,

Sorry I have not answered before now, I am wayyyyyy behind on my

e-mail. Advice on dealing with doctors, hmmmm let me see...

First of all....YOU and only YOU know your body. Educate yourself.

Know what you are talking about and if the dr. tells you something you KNOW

is not true question it...but do it carefully as most NSG's suffer greatly

with the " God Syndrome. " Do not do anything that you KNOW does not feel

right.

<< I don't like to doubt the professional opinions of doctors but I've

recalled a lot of things that I've experienced throughout my life that COULD

be related to ACM 1. >>

You know I learned this the hard way. I believed in 's NSG. I

trusted him with my most precious possession...and I almost lost it. You can

read 's story (address is below in my signature line). Because

's NSG kept telling me that his chiari was asymptomatic, and not

causing his problems, 's symptoms were treated for 5 years and not the

cause, The Chiari. At 5 years old he went into lung failure and spent 60

days on life support in a coma. I did not know if he would make it...After

120 days he came home, with a radical trache and NON-VOCAL because of the

trache but he was alive.

All this was because I trusted his NSG. We forget these Drs. are human

also. They may have more book knowledge than us but we live this everyday. W

e know our bodies, or in my case, I KNOW . As long as you educate

yourself as much as you can, have faith in your knowledge and common

sense...Then it is best to doubt or question when you do not feel it is

right. You are your own best advocate, trust in yourself first.

BTW ~ was decompressed March 2, 1999 and is doing wonderfully. Al

l and I mean all symptoms disappeared immediately and he has continued to

improve. Hopefully, within the next few months he will be coming off the

oxygen. We have an appointment with the Pulmonologist Sept 20th. Please say

your prayers....That will be liberation day for my little man!!!

      Love, huggs, and prayers, Haydee (Nana to , 8 years old w/Spina

Bifida, ACM II, Hydrocephalus w/VP Shunt, Tethered Cord, Syringomyelia

w/Syrinx @ c1-c2, G-Tube fed, (totally NPO), Swallowing Coordination

Disorder, Neurogenic Bladder, ARDS (Lung Failure 3/30/97, 33 days on ECMO

(total lung bypass), 50 days in a Coma, 60 days on life support, 24

HR-Humidified Oxygen Dependent, Radical Tracheostomy w/total loss of Vocal

Cord Use, Resistant Pseudomonas, Paralyzed from the Waist Down, 18 Surgeries,

Asthma, Severe Latex Allergy, Allergy to many Medications, Adhesives, and

tons of other stuff, Posterior Fossa Decompression, Opening of the Dura, No

Graft,  c1-c2 Laminectomy, March 2, 1999, so far so good and getting better

and stronger every day!!!  With Such a Wonderful Love of Life and one

crazzzzzy Nana (dx'd so far with Lupus, Hypothyroidism, GERDS, IBS, Sleep

Apnea, Carpal Tunnel, & Severe Edema) living right outside Baton Rouge,

Louisiana)

's Web Page~~~~>  The Story

      http://www.pressenter.com/~chip/joshua.htm