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Cavernous Angioma Hemorrhage in My Brain Stem

 

From: "Rivky Ludzker" ludzker@optonline.net
Sent: December 6, 2007

I would like to hear from others who had similar experiences to me. I will try to be as concise as possible as my story is quite long and detailed. In May of 03 and then again during my second pregnancy in October of 05, I felt slight tingling in my lips on the upper and lower left side. These symptoms scared me but since they only lasted a few weeks, my doctor said it was most probably a symptom from a virus. In October of 05 the tingling came back and lasted for 3 months. In January 06, when my 2 kids were 19 and 6 months old, the numbness spread to ½ my tongue & around my mouth on the left side. This really got me nervous and I was planning to go to the doctor. I never got around to it because suddenly I started to feel unsteady and disoriented and I found it hard to get words out. I couldn’t walk straight and bumped into the walls. I couldn’t balance properly and had to get dressed sitting down. Then I started to feel tingling in my left arm and hand. I went to the emergency room in Manhattan and they took a cat scan and found bleeding in my brain stem. While I was in the ER, my vision started to become double from the active bleeding. They admitted me to the hospital and started me on intravenous Decadron right away to stop the inflammation. The next day I had an MRI and my neurologist found a cavernous angioma in my brain stem. He said that the MRI shows 2 previous small bleeds and the current hemorrhage. The 2 times that I felt the tingling, were small hemorrhages. I was in a very dangerous situation because another hemorrhage could be fatal and surgery to remove it is very risky. My husband and my neurologist did extensive research to try and find a good neurosurgeon for me. Most neurosurgeons don’t even attempt to operate on the brain stem. All the research pointed to Dr. Robert Spetzler in phoenix Arizona BNI (Barrow Neurological Institute) at St. Joseph’s hospital. My husband overnighted my MRI to Dr. Spetzler for a consult. There weren’t ant neurosurgeons in Manhattan who even attempt such a risky surgery. Dr. Spetzler said that he can operate but it is better to wait a few months for the blood to be absorbed into the surrounding tissue so that it will be easier to see during the surgery. I was discharged from the hospital and given a prescription to continue taking Decadron orally at home. With time as the blood reabsorbed, I was supposed to regain some coordination. Instead of getting better, my left side was getting weaker and my coordination was becoming worse. I was unable to care for my children or do any housework. I was extremely fatigued and the steroids distorted my thinking and made me depressed. My neurologist advised me to have the surgery ASAP. I had to fly to Arizona for the surgery and I went naively optimistic. My husband who did a lot of research, knew all the risks but I was feeling too indifferent and apathetic to be concerned because the steroids warped my thinking.

To make a long story short; Dr. Spetzler successfully removed my cavernous angioma without damaging any surrounding nerves, but due to the stress and trauma to the area, I suffered from hemi paresis on my left side and my double vision was much worse than before the surgery. I also felt constant spinning in my head that there was no relief from. I don’t remember much of my stay in AZ. All I know is that I cried and cried.

After 10 days I was flown back to NY and went to a rehab hospital were I stayed for 4 months which was a big nightmare. I came home needing full time help because I still could not take care of my basic needs. We had live-in help to care for my children and housekeeping and another person to look after me. Over the year with much of therapy, I made a lot of progress. The 2 therapies that I find the most effective are the Feldenkrais method and water therapy.

Today I still need live-in help to care for my children and household, but I can shower and dress myself and I walk with a cane. I instruct and participate in all the cooking. I still have very limited use of my left hand but it keeps improving. My vision is ok, but I still see double when I look left. I drive a car and use a wheel spinner so I can turn with only one hand. I have energy and run my household by instructing my helper how and what to do. When I go shopping I walk with the shopping cart and my helper puts the things in. I still go for water therapy twice a week and I recently started going to the gym where I use some of the machines. I see a Feldenkrais practitioner once a week which I find to be very effective. I live a happy and productive life with my husband & 2 kids and although I am still quite handicapped, I get around and live a very active life. I work hard and constantly see improvement and I am optimistic that I will completely recover.

I know my story is long and detailed, but this is a very abridged version of it. I very much would like to hear from others who had hemi paresis after surgery and what their recovery was like.

UPDATE: December 13, 2007

Since my surgery, I have written numerous poems on different occasions. In fact I am in the middle of writing a book about my experience. I wrote the following poem around 6 weeks after my surgery when I was still in the hospital.

This whole situation,
Is hard to bear.
Sitting all day in a wheel chair,
I can’t even pull up my own underwear.
I can’t wait until this time next year.

When I will be all better,
Good as new.
How long I’ll be here, I haven’t a clue.
But looking back,
I’ll say the time flew.

I wrote this poem on December 25, 2006, when I was feeling quite desperate and dysfunctional.

Dear Hashem(G-d in Hebrew),
I have a yearning and longing
And aching within.
To recover and be
All that I’ve once been.
To be able to walk
Use both hands with ease.
To take care of my children
I beg of you, please.
I want to change diapers,
Do laundry and dishes.
Be wife to my husband,
Fulfill all his wishes.
Clean chickens, scrub toilets,
Peel potatoes, mop floors,
Take out the garbage,
And organize drawers.
Give my kids baths,
And then brush their hair.
Tuck them in bed,
And do all their care.
It’s hard to sit by,
To observe and to see,
Others doing my job,
When it should really be me.
Hashem please help,
Make my progress move fast.
Restore me my health,
And make this all past.
And when I am better,
And able again.
I hope to do more,
Than I ever did then.
I plan to keep busy,
 with many good deeds.
For the past ten months,
I’ve planted the seeds.
I pondered and thought,
Turned ideas in my mind.
I just want to go,
And leave this behind.
To be whole and complete,
Is what I aspire,
But your help Hashem,
Is what I require.
I’m doing all I can,
To get to my goal.
I ask and I beg,
Please make me whole.
No therapist or doctor,
Can promise a cure,
But you can Hashem,
And of that I am sure.

I wrote the following poem on August 5, 2007 to express how I felt as a mother who can finally be a mother to my children even though I am still handicapped.

I finally feel
Like a mother once more
To my two precious children,
That I so adore.
Although there’s a lot,
That I still cannot do.
But that doesn’t matter,
From my kid’s point of view.
To them I’m just mommy,
The way I should be,
They don’t know any better,
And my flaws they don’t see.
I make boo boos better,
With a hug and a kiss.
And it works really well
Because innocence is bliss.
And when bed time arrives,
Only mommy will do.
No one’s as good,
To them, that is true.
When they want a nice treat,
They come and ask me.
Because I’m their mother,
It’s simple you see.
And they sure can sense it,
they feel and they know,
that I am their mother,
and I love them just so.
I may not be doing,
The physical part.
But mothering I am
And that I do, with my heart.

I can’t wait to write an updated Dear Hashem poem with my thanks and gratitude for being fully recovered.

Rivky Ludzker
New York, NY


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