Update and help :_(

General Blog
#1

Well, i haven't been on here for a while, sorry. I hope everyone is doing o.k.

I have finally found out what is wrong w/ me. I went to see Dr. John Conners @ Vanderbilt in Nashville. He did an angiogram and said that what i had was a Lot of venous malformations, more on the left brain than the right. And in his words " it's the most beautiful venous malformation i've seen". Everything is draining o.k. the problem is the arterie that it's draining into has started narrowing. He said there is nothing or rather he advised doing nothing other than treating the symptoms. Said i would probably bleed out if surgery is done. And i have faith in him so that's the plan.

My problems are headaches, migraines from hell, very off balance, some vision loss in the right eye @ night ( but it doesn't last long), blurry vision in my right eye, fatigue, problems writing and using my right hand and A LOT of depression. Some days i wonder why the good Lord doesn't take me and let someone else live. I'm done, raised a family, not much to live for. There are so many sick children out there, i would love to save one of their lives.

My family is not very believing of me, i guess if u can't see something like a broken limb, it is hard to take that persons word.

Please pray for me, just acceptance for my family. If that would happen,i would be fine. Live till u die, right?

I hope this finds everyone doing well or as well as can be expected.

Love to you all,

Jackie

#2

Hi Jackie,

Did your doctor say your symptoms may be caused from venous congestion? I have recently been diagnosed with a AVM and am new to all that goes with the diagnosis. I have had similar symptoms that you mentioned you have. They come and thankfully go . My (new) neurologist (in Houston) told me if the blood can't drain properly it could be backing up causing various symptoms. I am scheduled for a angiogram in June. I have been misdiagnosed for years. I have found some comfort in knowing there are explanations and possible treatment for my symptoms. I would suggest you get a second doctor's opinion. I was going to a popular neurologist in Port Arthur Tx. that had a 4star rating and a great personality. I had confidence in his ability as a physician. I had been his patient for approximately "7" years. Primary initial complaint was severe headaches, fatigue, various pains in my back and throughout body, muscle cramps, muscle spasms, nausea and some vomiting, eye problems, memory problems/brain fog and depression. I now look back at all my symptoms and wonder why my doctor only ordered a MRI of my spine. MRI reports found two herniated discs and doctor prescribed meds. This neuro dr. also diagnosed me with fibromyalgia. In March (2011) I scheduled an appointment because my left side of head, face and arm (to elbow)

had went numb and tingling. This doc ordered a cervicle spine MRI and x-ray. MRI results showed pinched spinal cord due to disc degenerative disease. He ordered physical therapy 3 times a week and explained this has been causing my constant headaches. After two weeks of physical therapy my "left side" of head, face and arm to elbow was still numb and tingling.....but my numbness and tingling traveled down my left arm and into my hand. I was not able to feel and maneuver my fingers. I called my neuro dr. and scheduled

another appointment. After listening to my new symptom, my neuro dr prescribes a "brain" MRI. He also tells me ; "anytime you have symptoms in your head or above your neck...it is always caused from your head/possible brain". I was shocked, ...my new symptom was only from my left elbow to my fingers. I wondered why did he order a cervicle spine MRI when my symptoms were from my HEAD, FACE and arm if he knew numbness and tingling in my face and head couldn't be caused from my spine????? MRI results showed a small menengioma and AVM. I am seeing a new neurologist. I hope and pray for God's peace and comfort to encompass you.

Some of my lifes greatest blessings have evolved through strife. trials and tribulations . I believe God provides rainbows after every storm.

God Bless

i

#3

Jackie, you are NOT done, you do not know that....

God has plans for you.

Ohhh how true your words are about family and friends

not "understanding", i have always said what you say,

it is easy for them to forget because we dont have phsical scars.

my doctor was amazing and during surgery

HE SAVED MY LONG THIK HAIR (only shaving along the incision line)

after i took my bandage off and washed my hair (3 days later)

i looked almost bak to my normal self (before the surgery) no visible scars.

to be honest, sometimes it bothers me....

maybe a scar would save me the feeling of needing to want

to explain to others why my right arm, jolts up involuntary if i am startled....

my husband was there every minute, June 19th 2004

we went through the challenge together,

he never left the hospital, he was at every rehab session,

we prayed and cried together.....

the only thing i find now is that he is able to forget those days,

he does not have the reminders like i do.....

terrible memory, aphasia, i stutter now,

i also cant use my right hand as well anymore, fatigue etc

jackie dont ever give up,

you will save a life, ONE DAY,

WHEN IT IS YOUR TIME

you are in my thoughts and prayers

i am sending you positive energy

please feel free to contact me anytime

Blessings

#4

Thank u soooo much Margaret!

You said exactly what i feel, the only one who doesn't "forget" is my daughter. And i called her crying this morning. Yesterday i woke up w/ the jerking all over, muscles have a mind of their own. Headache, off balance, NO energy. And he's good w/ me as long as he "sees" the physical movements. Then it's o.k. let's get up and go.

Woke up today, ran into the wall, thank goodness for that wall.lol it's right when i get up. Headache right in my forehead, no energy still, BUT, i should be my "normal" self.

I have no hope right now for any surgery, bc the venous anomaly is draining, just all draining into one big arterie, that has a major narrowing. Nothing can be done except treat the symptoms. Which is o.k. as long as they understand the symptoms.

Thanks !

Jackie