NARRATIVES
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Established April 15, 1995
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MaryLee and family
My name is MaryLee Arnold and I'm an AVM survivor. I live with my husband, almost 15 year old son and 121/2 year old daughter in Brooklyn New York; 20 minutes from NYC. I watched the towers burn on 9/11. I am updating because on April 12th I lost my beloved Katie cat; 17 years and 8 months. She was truly a member of the family. All our gerbils have passed over and our Coco cat passed 3 years ago. How empty the house feels. Katie took a piece of my heart and soul. Life is a struggle; I can't exercise like I used to. As I look at it; it's just another day.
14 December 2001
Hi! My name is Marylee Arnold. I have been suffering from migraines for about 15 years. Last July I was hiking with my sister and 2 children and I suffered a grand mal seizure. The following week I had right sided weakness and thought I experienced a mini stroke. My work up was completed and no one knew what was wrong. Some people hinted it was stress related. We have had a very difficult 13 months.
Unfortuntely I was in a car accident and experienced disc damage. In November I experienced a severe migraine and almost passed out. My blood pressure was high and I experienced the steal syndrome - my arms were ice cold. Again thought to be stress. This was followed by 3 weeks of vertigo.
I saw an ENT doctor who ordered an mri and the avm was found. It is in the occipital lobe near the optic nerve.
I have seen a doctor in NYU and Columbia presbyterian. Both have different thoughts. Next week I am going to Beth Israel.
If I have the surgery I run the risk of eye damage. I can lose half my field of vision in both eyes. I am very active, I am a nurse, and have 2 children. I am now on Dilantin to prevent seizures. I've done a lot of crying and praying. What to do?? Do I have the time??
This is a great web site. Will keep you posted!
Update 24 Dec 2001
I had my third opinion on Wednesday at Beth Israel with a neurosurgeon Dr. Flamm. He inspired more confidence in me and eliminated Columbia from my choices. The neurosurgeon at Columbia threw fancy terminology at me and this man simplified it. He thought I should have the embolization and then take it from there. He said I could go through the route of gamma knife instead of the crani just because of the close proximity of my avm to the optic nerve.
This week I had another attack that started with the migraine and darkness and I was close to passing out. This happened in the middle of the street and I was blessed to have an angel come by to call for an ambulance and stay with me until help arrived. Hope to hang on until the holidays for my children and most of the docs are away.
Please continue to pray for us.
Thanks for your support! It helps. I'm often depressed and I have found out this is normal. I know I have a long road ahead and I hope I'm strong enough! My family too!
Update 31 Dec 2001
I reach out to my new avm family for feedback! I am going full circle and leaning toward a crani; to get rid of this annoyance once and for all. I don't have much luxury in waiting. I have only one narrowed vein leading off my malformation; all doctors feel the sooner treated the better. Why am I now considering NYU? Dr. Jaffar always gets right back to me. My neurologist who is super, highly recommends him, and is associated with NYU! He takes my insurance!
As you all can relate to; we are besieged by bills; my husband has bad health problems too! He has precancer in a long segment of his esophagus! Now I am out of work!! My son has health problems and my daughter is always complaining of headaches! She had a cat scan but if they continue I'll push for an mri! What a difficult year; and it's not starting any better. I appreciate and love everyone of you who have reached out to me. I feel so alone, but knowing you've all been there - helps!!!! Please pray for us; this tired family!!
Update 5 Jan 2002
Well the decision is made!! On January 15, I enter NYU hospital for my embolization and the craniotomy will be on the 16th. I am so scared but I feel this is the best decision. My parents are taking it so hard; they are praying for a miracle. The miracle for me will be that I make it through these procedures with minimal side effects.
God bless you all for your kind words of support; they keep me going! I am so scared and I am so alone in this!! You have all been there! That helps!! Please continue to pray for us!!
Update 11 Jan 2002
To my dear AVM family!! I need help, advice, direction and prayers; in any order. Was supposed to have the embolization on Tuesday and the crani on Wednesday. Called the office to see when I was scheduled for PAT (preadmission testing) and the secretary was evasive. Finally told me I didn't have to come. I thought thats odd because I'm on Dilantin and would need history and physical. Then at 2 she calls and tells me I have to come in on Friday. At 4 she calls and says I have good news; you don't have to come in tomorrow. Why I ask and she says I have to postpone your surgery. I burst into tears, I had put my mind in gear to go. She told me I know how you feel and I told her NO you don't.
Anyway she lied and said the embolization doc had an emergency that day; I work in an OR, you don't book a case that far ahead. Then she said , oh he's got to go out of town. She messed up. The embolization doc called me, very nice and scared me. He said I have a high chance of losing eye sight - 50% cut in both eyes. He said HE'S concerned. If I didn't have symptoms he'd just watch me. The eye sight loss can come with the embolization.
The other problem is the narrowed single vein coming off the AVM. I need help , direction and advice from my new family who has been there. My family is praying for a miracle. My head is spinning!!!!!!! HELP ME!!!! Love to all who have been there for me!!!!
Update 18 Jan 2002
Hi to my new family and friends. Went to PAT (pre admission testing yesterday). Was feeling so peaceful prior. Went to see the neuro floor and became scared out of my wits. The embolization will take place at NYU on the 22nd and the MD is Dr. Nelson a former partner of Dr. Berenstein. He does his under general (ugh). On the 23rd will be the craniotomy and the surgeon will be Dr. Jafar. I was impressed he called me today. Asked if I had questions and if I wanted to see him. I thought that was kind.I do have a good rapport. The embo doc doesn't have much of a personality but as long as he's good. As someone said to me; The doctor is the vehicle but the hands are Gods.
Thought my family would do better at home but the nurse practitioner said they should be there for some part of it. Gave the scary look. Said in case the surgeon needs to talk to them. GULP! Ok! Power of positive thinking and let go and let God. Thought it would be better if my husband was with the children. Oh well.
My Mom looks so tired. Children so very scared. Please pray for all of us! I am indebted to all of you. Thanks for the support. Signing off and begging for you prayers and positive energy!! Love to you all,
Update 18 Feb 2002
A big hello to my family!! I am alive, I can see, I can type this!! I am truly a miracle and I will never stop praising Jesus the great Physician.
This Tuesday is my 4 week anniversary for the embolization. I lied to my husband on that day. I told him I was taking car service into the city (I didn't want him to disrupt the children's routine). Car service did come but I took it to the subway. There I was with my bag and suitcase reading every prayer I could! Took the train to 34th street and had to take the cross-town bus. This was ironic; I looked across and met the eyes of the fellow who would be assisting Dr. Nelson!!! (He assisted Dr. Nelson with my angiography!) I averted my eyes; didn't want to think of what was ahead.
Arrived at 7am, right on time. Another fellow came to talk to me and take my history and physical. He informed me that I was being bumped for another patient; a shorter procedure. haha! When I asked, "why didn't you call me and tell me to come in later; he said we'd rather you wait for us then for us to wait for you!" Thinking what goes around comes around. Waited until 12:15. Jesus gave me such peace that I was actually able to sleep for 3 hours. I then prayed and prayed.
Who should arrive to take me to the suite but my angel Marie. She was with me during the angiography and prayed with me then. Again she held my hand. The anesthesiologist was a character and started fighting with the nurse. Ah, sleep!! Woke up to Marie calling my name!! I started screaming , "Praise Jesus I can SEE!!!" Was sent to the recovery room where a great nurse took such good care.
Was sick from the general and was then told I had to go for the MRI: started crying. I am claustrophobic and I was vomiting. Again the angels took such good care. Held my hand. Luckily I had enough general to keep me relaxed. Then the nurse practitioner came to apply markers and shave my head. I would have been the hit of the village.
My surgeon came and said they embolized 90-95%. Would you rather have the gamma knife. I said " no let's go with the original plan, but it did haunt me all night!" Spent a restless night; then at 7am it's off to the operating room. Lying there by myself; praying , praying:" Jesus it's all in your hands now!!!"
Had a great anesthesiologist!! So kind! Woke up!!! There's Marie again. I'm screaming ,Thank you Marie my angel!!! I can SEE!!!! Thank you Jesus My Lord!!!! Heard the doctors talking ; "give her some sedation!!!!" They performed an angiogram on the table; the AVM is gone!!!!! PRAISE JESUS!!! All this coming from someone who thought she had lost her faith!!
My husband is there. Very sick from the general. Not easy to vomit flat. Would vomit for the next 24 hours. My night nurse took such good care. Another angel. What a night!!! The next morning sent for a cat scan. Sick! Lying there. Can't sleep on my back; incision site hurt. Can't sleep on my right side cause of the angiogram. Can't sleep on my left side because I was on my left side for the procedure. My ear and left side are still sore; guess they didn't pad me well. Will address this with our clinical instructor. Left there. Finally I spotted a secretary. "please help me!!!!!" She spoke to someone and told me "I'm sorry we're just so busy!"
Next thing I know the Doctor in charge of cat scans comes and fits me in!!! Thank you God for another angel!! Leaves me in the back after the procedure! I spot a man from escort. "please help me!! I"m so sick!!" He walks away but comes over with a chart to take me back to my room. Thank you God for this angel.
When I come back I am really sick!! There is my neurologist. Drove in from Brooklyn. I grab his hand. OH God I am sick. He said "what do you expect, they opened up your head." He told me the neurosurgeon want to discharge me in 2 days and he said no!!! He said "this woman has been sick since July and has 2 young children; at least keep her until Monday! Thank you Doctor Yelling for seeing me as a person!!! Oh, man's inhumanity to man!!!! I will write more when I have a free minute. My daughter's so needy; I cant blame her; What a long 15 months it's been!!!!
Update 5 Mar 2002
It's amazing what they , the staff don't tell you. The nurses tell me to walk around; they don't tell me my head is going to click. Thank goodness Kim wrote about that. They don't tell you your eyes are going to swell; you have to figure a lot out for yourself.
My one room mate is 46 and just went through her third craniotomy for a malignant brain tumor. Her name is Kritikka, so everyone can pray for her. What an inspiration. She is kind and funny and upbeat. It doesn't look good for her. Her family holds on t0 her with fear. They spend most of the day!!!! How selfish I have been in my fears . Jesus touch her!!!!
My next roommate is in her 50's; a benign brain tumor but she keeps suffering setbacks. Her sister stays with her 24/7. I am surrounded by such loving people who have "danced the dance". My day comes to go home!! 5 days post-op and I'm ready! I''m weak! Half my head is shaved but I'm ready.
My mother comes with my husband. There are balloons all over the house. My father hasn't seen me yet!! He rushes up: hugs me and says!!! Wow you look good, you lost a lot of weight!" Hello!!!!! I just had my head opened!!! I would have taken the pounds and put them right back not to go through this and not to have my children go through this. I want to be up when my children come home, but I fall asleep.
Poor Connor and Lexi; my eyes are puffy and half my head is shaven as I look at them from sleepy eyes. I hold them and ask how they feel when they look at me! 2 requests: please cover my head and wear earrings. OK! I vow to be there every morning to hug them before school and to get up when they get home. I am blessed!
One mom brings a meal over. I receive cards , there are calls and flowers and my best friend/sister flies in from Kansas!! I call my friend who cuts hair; she comes over and cuts my hair so the back is covered!!!! What a funky cut!!!! Holly is such a beautiful person and does this as an act of love. My colleagues/friends, Linda and Grace take up donations and collections for me. The bills, even with insurance are incredible. On a dark money day there is the checks from my fellow workers!!!! I am ssooo blessed.
Visit the neurosurgeon, first thing he says, "you cut your hair short!" Say what??? I say you should know you shaved half of it. So matter of fact! Not putting down his skills but do you see me?? Great poem on Candy's web site; written by Kim Rueffer about health care professionals NOT seeing us!!!! I sent many copies with my own disappointments to the docs. I was misdiagnosed and treated like a leper in my own hospital.
Have so much to say but will cut it short. Still have eye problems; definitely need glasses; in the scheme of things WHO CARES? Still have these funky light migraines in my left field; similar to what I had with my AVM; I know these wont kill me but they're annoying. I'm on Dilantin 400mg every day and 600mg. of Neurontin. I'm power walking every day; can't wait until I get back to running. I 'm going to have t-shirts made that say AVM SURVIVOR on the front and BRAIN SURGERY SURVIVOR on the back!!! We have to get the word out. So many of us have been misdiagnosed!!!
My husband was wonderful. The moms at school can't stop telling me how great he was. He was very supportive of me. He was the one that said,"Get it out!" He was right! My sister saw me 3 times in the hospital with her squeamish fianceé. Both saw me at my worst; vomitting! My Mom was there praying ;it was very difficult for her! My sister-in law-, Mary and her family took my children and nurtured them and kept their spirits high. God bless everyone
Many thanks to my special avm friends; Candy, Kim, Linda, Sylvia, Ruth, Hank, Angela, Dick, Sandra and all who sent supportive notes! I LOVE YOU AND THANK GOD FOR YOU, MY BRAIN SURGERY SUPPORT GROUP. YOU GAVE ME THE STRENGTH TO CARRY ON. THANKS AND GOD BLESS ALL OF MY FAMILY AND FRIENDS!
I have been having partial seizures. The neurologist tried to increase my Neurontin but it left me incapacitated. I called him and left a message that said I can't function!! I saw the neurosurgeon and this visit went much better; I realized what went wrong the last time. I wore platform shoes, and I'm 5 foot 9 without shoes; I towered over him; a definite no no for a surgeon. As an OR nurse I should have known better. He looked me in the eye and said " I really thought you would have had significant eyesight loss. I'm having trouble remembering lately. I looked him in the eye and said "then doctor I am really blessed!!!"
I had the t-shirts made. If anyone wants a picture, send me your address.The printer was so proud of his work; in collaboration with my husband but I realize the message isn't really getting out there. He made a white t-shirt with blue lettering. The front has a cross; we live in the midst of the towers, and I think people assume it's a 9/11 shirt. Mr gut feeling; a black t-shirt with white lettering would be best! Stark and out there!! I have to work on that. If anyone wants a picture it will take some time; have to finish the pictures in the camera. My love to everyone!!!my family!!
Update: 13 May 2002
Hi to my friends and family!!
On April 7th I ran a 5k and finished!!! I'll never be a marathon runner but I feel so blessed that I am able to run again.
One of the positive sides of going through all this turmoil; I lost the 16 lbs I had gained over the years. I have learned not to sweat the small things and I have learned who my friends and family really are; not as many as I could have hoped. People make many promises but grow tired of someone who doesn't get well immediately. I still tire easily; but I know that is normal. I am on 300mg of Dilantin and 450 mg of Trileptal. I have some flashing lights in my left field; distracting but I did pray for the light!!!
As a nurse in the operating room, returning to work now would not be in the best interest of my patients or me!! I have made the t-shirts but they do not have the impact I had hoped. Two people e-mailed me for pictures of the shirts but I'm sorry that I lost the names and addresses. If I can find the pictures I'll be glad to send them; oh yea; I do seem to have some memory loss! haha. I am going to make new t-shirts with white lettering on black; much more dramatic. The cross with gold and blue on the white t-shirt looks too much like a 9/11 message; especially since we watched the towers burn from here. I am not going to describe myself as a survivor; I am a victor!!!!!!!!!
I am here for anyone!! To pray to offer support;I learned this from my mentor Candy! Thanks again to my friends who are there for me to this day: Candy, Kim (think and pray for you), Dick, Hank, Sandy , Ruth and Rick, Angela (so brave, 4 embolizations)!, Linda(where are you?), Sylvia, Frances and EVERYONE!!! YOU are my family; you can understand me and my feelings!!!!! Love to everyone!!
Update: 21 Jan 2003
Tomorrow is my one year anniversary. I wish I could feel better about it. When they tell you, there is a 20% possibility of a stroke and a higher possibility of significant eyesight loss; immediately you feel blessed. You move your extremities; you see light. No one can prepare you for the difficult road ahead. No one tells you there will be periorbital swelling; you wont be able to see clearly for a while; your eyes will be black. No one tells you there will be a possibility of partial seizures, headaches and the God awful fatigue. I was a powerhouse; full of life and energy. Now getting into bed at night is my favorite time. I, who used to be the life of the party usually needs to lie down.
I still can't work because I can't even help my daughter with 3rd grade homework. I am currently undergoing neuropsychiatric testing. The neuroradiologist didn't take my insurance as payment so we have outstanding bills; this is a man who scared me before the procedure; never came to see me; bumped me for 5 hours on my big day; he'd rather I wait than he wait; no humanity at all.
No one tells you there will be plates and screws in your head; always sore. No one tells you they will fill the hole with cement and you can feel it cracking. No one prepares you for feeling like half the person you were. My personality has changed 100%; I feel like an outsider looking at a different person. The family feels it! I feel it! There is nothing I can do! When I look at photographs it's before and after; now I look like the light went out.
Went for a run today and had the avm headache. A flashing red light with a bright background; I wasn't stressed; it came out of the blue! How can I return to nursing?? How can I hop in the car and take a 11/2! hour drive to my sister's?
I wish you all God luck and blessings!! You are all so important to me.
Update: 1 Jun 2003
I am writing this with trepidation; I am at a point in life where many of you have been. Tomorrow I return to work: part time; 2 days per week but in a busy sensory stimulated operating room. Am I ready? physically? mentally? I don't think so! My husband has been yelling about our finances; gosh I never should have taken on this brain problem: it's now or never.
I finally finished my neuropsych testing; so many months and tears and fights with my insurance company; to this day I don't know if they will pay; won't etc; it's always changing. The results were not promising; but at least the scores reflected what I was feeling. I have severe impairment with executive functioning; logical reasoning, memory, my IQ dropped over 20 points. My visual spatial capabilities are moderately impaired; that we all expected. The doctor mentioned depression too. I tried zoloft; yes it makes you feel a bit spacey; I realized it's limitations when my son was sick and I still kept crying! Hey doc! I need a new life or maybe God will wake up and give this weary family a break; our problems have been years in the making. Anyway,I hope I can function !!
Maybe I can regain some self worth; so many people surrounding me just don't get it! I cling to this family!!!!!
I'm afraid to look at this stranger I see
She looks so weary, it just cannot be me!
Walking so carefully, holding on to the wall
If i don't move gingerly, I know I will fall.
Numbness in the hands, flashing in the eye
the fatigue overwhelming, I just want to cry
Pills for the seizures, pills for the head
You worry about your family, have to get out of bed
No end in sight, weary all day long
It seems so unreal, I will never belong.
I still have the short circuiting, flashes of light, severe headaches, etc. The doctor added Keppra to the Trileptal but it truly incapacitates me. I have been trying to adjust my dose so I can function. I am told my personality has changed?? Has it, or is it that I just can't be superwoman anymore?? Is it that I now need people to do for me rather than for me to always be doing for everyone else?? Children exempted. They are my only reason for getting out of bed every day!!!
Thanks to my supportive avm aneurysm friends/family!! Without all of you I would truly be lost!!
Update: 10 Dec 2003
I tried to work; every day was a struggle! The vertigo remains severe; I would have flashing lights..sometimes severe. I never had a break and I think at times I worked harder than the others.
In December I saw my neurologist; if approved by my neurosurgeon he wants me to have an MRI. Last month I had severe seizure activity; metallic taste; flashing lights leaving me unable to see out of my left eye; weakness; repetitive movements and twitching in my mouth. My Keppra was upped; I am on 500mg Keppra twice a day; 450 mg Trileptal twice a day and Inderal 20 mg twice a day for high blood pressure and irregular heart beat. It leaves me so tired and I have trouble running; a "used to be" passion of mine.
I just came from Social Security where I applied; I am waiting for my denial; a fact of life.
Yesterday we put my parents dog/ hairysister to sleep; it was so very, very sad. A much loved member of the family. With my parents 24/7; they wouldn't even take vacations. Not a good time of year for extra sadness. My poor, poor children.
I have grown so weary; sick and tired of being sick and tired. I feel useless, helpless and at a loss. My husband laments the loss of income; what can I do??? I used to walk at work holding on to walls. When I scrubbed I leaned against the operating room table to stabalize my body and to stop the swaying. I am watching my husband running around frantically trying to straighten; it all has become so tiring.
Thanks to all who answered my accident question; I'm sorry I was confused and mentioned avm's being hereditary and not genetic...anyway I think I presented myself the wrong way; my brain just doesn't function. I'm sorry for typos...incorrect grammar; I'm having trouble writing this.
Please don't tell me to feel up; to count my blessings I'm alive...I Know all that. I mourn the loss of me; probably mostly for those around me.
I mourn the loss of me!
The me that used to be
The me no one could see
The me that will never be
The me I can't set free
I mourn the loss of me
I used to love to write; somehow it's all gone; with my emotions, energy, intelligence. God bless and thank you to my family for all your support. Happy Holidays!
Update: 08 Mar 2004
My update; a familiar one; I have been rejected for SSI! The letter humiliated me! it angered and demeaned me! MaryLee, mother, certified nurse is told I can work! Who are they to tell me I can work? I want to! I'm not an immigrant looking for a handout!! Where I live they come off the planes and are handed free housing and food stamps!!!!! I loved my job! I tried to work; I want to work! BUT I can't!!
Why are the brain injured such a forgotten, unseen group!! I truly mourn for our indignities! The indignity of loss of self and the inability of people to see who we WERE!! What we have become!!
i tell you i am hurting, i tell you i'm in
pain
you look at me and shake your head as if i am insane
you dont know the person..that i used to be
you look down at your papers...you DON'T want to see me
you tell me i can work..there are lots of jobs for you...
with the vertigo and pain...please tell me what can i do?
the pain in my forehead...i forgot..what you have said
I should clean the house...but i need to go to bed
REJECTED! turned away...by the social security place
please take a closer look and see the pain etched in my face
i guess you think i'm lazy...if only you could know
i loved my o r nursing ...i was always on the go
what do you all care?? i'm only a number to you
you write that i should work...please tell me what i can do?
i lie here in my bed...wishing i could cry
but with another rejection...my tear ducts have run dry.
Update: 28 July 2004
I have written this update so many times in my head; here I am; unable to sleep and I'm not sure what to say. Yes!! My social security hearing went well; the judge kindly nodded in my direction; said he had read all the medical reports and I had alot of serious problems; he wisely "saw" me!! He said there was no doubt with my medical history; accident and avm that I qualified! Then my lawyer hugged me and said we won!! I am still apprehensive until I receive the notification in the mail; then I will take a deep breath. I sat before the judge; head bowed;crying; tired and hoping for justice. Here we sit; knocked down in the prime of life just asking for what we have paid for; what we deserve; what we need; we are NOT LOOKING FOR A HAND-OUT; it is necessity that has brought us to the system;designed for people like us!
My neurologist who was with me at the beginning; and had supported me; began to act irrational. I had seen it at times in the office and I always made excuses. To make a long story short I believe his idiosyncricies began to turn into a full-fledged breakdown; of sorts. He began to act innappropriately! Then I found the greatest doctor; kind; spiritual; and willing to help me; listened to me. In May he had a massive heart attack; or that is what I heard.
The staff is still too upset to talk about it. Last time I called to see how he was; and selfishly to try and make an appointment they were too upset and a bit "short"; I was told August he'd be back. As we know; when you have problems; ongoing , as I do; you need another doctor. I was told he didn't have anyone covering him. Back to my insurance book; picked out a doctor in the area. Humiliating experience. Every time I told him about my history he would question me; tell me he didn't understand; you know brain dead person not making sense but all the misdiagnosis from brilliant docs...making sense; you all know the scene!!! Gave me an extensive check-up; have to give him that!! Then tells me; I have so many problems; so many complications from the accident and the avm he'd rather not deal with me. Try to go back to the sick doctor.
Then he asked me the question that kills me every time!!!! Every male doc asks "How is your husband taking this?" When my husband was sick and I was running to docs with him; taking care of small children and working; NOT ONE DOCTOR ASKED ME!!! Let's see; when I came home from my appointment with this doctor my husband didn't even ask me how it went. He was figuring out how much social security we would probably be getting and how much less it is than me working. Don't you get it man!!!??? I wan't to work. I loved my job; I liked my colleagues and my job was so rewarding...so very rewarding. I had my certification; my college degree. I grew up at that hospital. Only 2 people asked me how my appointment went; a member of the family and my sister who has been very supportive. It's just all too sad.
I get up every day because I have 2 children who need me; I get through the day to the best of my ability. The vertigo is severe; my head hurts; the neck, back and shoulders has progressed to arthritis; but we all do it and to the best of our ability. I read about broken friendshipsl relationships..etc..NO ONE GETS IT BUT US!!!! I lost over 20 points in my IQ; I was 20 lbs thinner; running; a powerhouse and now I'm not; those are the breaks but at least , in this family we have each other. I am here for anyone; my children have alot of health problems so it takes me a while to get back to people but I am here.
Not to scare anyone; not to make you depressed; to let you know!!! You are Not alone!! I apologize for grammatical errors, spelling etc; I used to be a fanatic about that...I used to be a completely different person..used..to ...be.....
Update: 25 August 2004
I would like to thank the "family" for all their advice on flying without problems! I am fine and have had no ill effects. I found my major problem was listening to the television; too much noise. I also used a nasal decongestant spray and pill; i tried the ear plugs but they didn't feel comfortable. One member highly recommended them; keep that in mind. I also chewed and swallowed continuously. Thanks to everyone for their help and advice. It wasn't as dramatic as usual because I focused on my children and their needs and fears; it worked!
I would also like to have members keep this in mind; we all have different thoughts and ideas. I asked a member to stop sending me political propoganda and she continued and it became quite "ugly". We need to respect each other and keep in mind this family is for support; where it goes from there is due to "connecting." I live in New York City and we are bracing for trouble not from terrorists abroad but from fellow Americans; I am scared for the safety of my family. We all have different backgrounds but share our "brain injuries". Thank you!!!
Update: 14 November 2004
The sound of the locker door clanging shut reverberated through the locker room. I finally emptied my locker; a very painful procedure. It was time to give up; surrender. I was approved for SSDI; the judge saw the mental and physical pain; a part of my life is over.
I don't see any miracles on the horizon; hey the medical industry is worried about male baldness (get a wig) and viagra (why make so many old women miserable). lol Who cares about us who have been brain injured?. Our personalities have changed: as I'm so often told. We have disabilities; seen and unseen. Some of us chose to live in a degree of isolation. We take meds that cause problems; dizziness, weight gain (a really sore point for me). We are so tired and as in my case the partial simple seizures continue.
I had the misfortune of being rear ended in a car accident that exacerbated the symptoms of my avm so I live with the pain from the neck, back, shoulders and a pinched nerve; what is from my accident and the carelessness of a driver and what is from the avm...who knows? Yes, those titanium screws and plates hurt a lot too.
Anyway, we have each other in this group to keep our spirits up. I have made so many wonderful, forever friends and for that I am so grateful!! I know I can receive help with questions, a phone call, a hug through my e-mail and I know I'm not alone. I thank God for the "family" and our site.
I do want to say that I don't blame my family. They do the best adjusting to the "new" MaryLee; my husband feels I make him look bad; that's not my intention. My intention is to reach out and say HELP! to those who Know!! It must be difficult for everyone to live with this "new person"; again...not someone I would chose to be!!
Love to my special friends; PLEASE! don't write if you want to tell me to be someone else; up beat, happy, grateful...etc. I am expressing myself and to those who know me; they do accept me. If you want to give me advice spend that time praying for my family. Thank you all!
Addendum: 18 November 2004
I feel that there were some misconceptions about my narrative. In no way do I feel sorry for myself. I feel sorry for my husband, parents, sister and friends who miss the old me. I miss her but realize she is gone.
I will miss the operating room but I am home with my children and they really need me; they have been through so much. They struggle with their own health problems and the sight of me having a seizure will never leave them but I am with them and that is truly a blessing. I have a nice family who care for and support me. I wish you all the best and thanks for the upbeat messages.
Update: 28 December 2004
Merry Christmas and Happy New Year to our family! I had a wonderful happy Christmas.
I had a disturbing incident and I wanted to let the family know. I went to my doctor before Christmas; this was the nice doctor. I waited my usual 2 hours; he came in one hour later; bragging he was exercising. His first words were; "you're depressed and angry." I said, no, i just want to feel better. Explained my partial seizures have increased in severity. He said so you want to change your meds?? I said , "well they haven't helped. I've gained 30 lbs and I'm so tired." (I'm on Keppra and Trileptal" He said no I'm not changing them. You need to exercise. I told him I do. He said I need to get on with my life. Didn't examine me and told me to get out.
That was it. To add insult to injury his secretary yelled at me for paying by check; they only want cash. That was it. Where do you go from here? How inhumane are doctors? Any feedback is appreciated.
Update: 15 September 2005
Today I sit here many months after my last update and realize, life can always get worse. We started off on January 1st with my son developing an upper respiratory infection which led to pneumonia which led to months of breathing difficulties and bronchitis. From there we went on to chronic sinus infections. I finally found some decent doctors who are trying to coordinate his care. They recently tested him for a form of cystic fibrosis and it came back abnormal; this past Friday he had 10 vials of blood drawn; the results should be in 2 weeks. He is 13 and 6 feet and you would never think of him having so many problems. I take him once a week for allergy shots; last month he went in to anaphlaxis and almost died; his allergies are severe and the shots must continue but it's all so frightening. My poor daughter has a bleeding problem; Von Willebrands but her main problems are emotional. There are no children around and whenever my children make friends they seem to pick the "problem" children. All in all, both children suffer.
I did see a new neurologist: He kept saying ,"your AVM was removed you shouldn't have any problems." It's all a very sad joke. He ordered tests; I went for the ambulatory EEG but when I was left waiting for over 2 hours while the tech spoke to her boyfriend and then went to lunch; I left. I realize the docs don't know or care: I haven't had a major seizure although I am beset by constant partial seizures. BUT I'm not going to get the help; they just don't know. I asked the doctor to try me on Topamax and the small dose was fine; when I advanced to the therapeutic level I had severe halluncinations and visual disturbances and had trouble thinking...well more than usual. I don't have the time to waste. I will concentrate on finding answers for my son; he has a lot more abnormalities than I even mentioned. Hold it together waiting for test results; provide my children with love and support; let my daughter know she Is worthy of being loved despite the idiots around us and we will survive all this... together.
I just can't pray anymore; please pray for the children if you really believe. Oh yes...No lectures please!! Unless you have 2 sick children, live in the neighborhood from hell and feel like crap you can't possibly know why I really feel like I do.
Update: 27 September 2005
I just had wonderful news: my son's blood tests came back normal. This is truly is miracle and I attribute our success to the prayers and support from our "family". Everyone was great!! I pray to St. Teresa and when I saw that rose blooming I had a good feeling but dared not to be hopeful; then the call!!! I love everyone!!!!
Update: 5 October 2005
Just thought my fellow "brainers" would be interested in the irony of the care we receive.
I saw the sceptical neurologist in June; when I described "some" of my symptoms he appeared doubtful but recommended a neuropsych doc to test me. After the hassle over 3 years ago trying to get approval from my insurance I didn't even bother making an appointment. I know my deficits (and they know me), and I'm too busy running to docs with my son. The office of the neuropsych doc is calling me!! trying to schedule appointments!! It appears it's better Not to try!! It's all so strange!!
I have been having terrible problems with increased flashing and I had an episode the other day where i was so tired, i coudn't speak, move...etc...and just had to sleep; went into the deepest sleep; could actually feel my body "float " away"...no one would know what to do with THAT one!!
I ask for continued prayers for my children; my son needs to go into the hospital for a bronchoscopy because he has/had a narrowed trachea; it must be under general anesthesia and his reflux is acting up again; poor child, it never stops. My poor daughter is having a lot of difficulty with separation anxiety; I do take her to a family therapist.
I'm happy to have all of you out there praying for us!! Excuse spelling errors; the doc did admit that is a residual problem from occipital damage.
Update: 8 January 2007
It has been over a year since my last update. Each year seems to get more difficult. My son had his bronchoscopy; he had a difficult time after it. His temperature spiked to 104 and he almost was rushed back to the hospital. At one point he looked at me and asked me if he was going to die. At least the trachea appears normal but his reflux is still bad. Christmas came with my children sick with a stomach virus right before the holiday, and my husband and I very sick on that day. What a disappointment for the children.
The New Year started quietly , both children enjoying their sports activities , then BANG. Connor broke his wrist. From there it was acute bronchitis, asthma, etc; he missed another 2½ weeks of school. Since this was 8th grade it was more upsetting. Lexi was having trouble with "mean" girls; so much for learning the Christian rules.
During the summer we threw caution to the wind and took the children on another cruise. We had such a good time as a family; and enjoyed my sister and her family accompanying us.
Boom! It's August and Connor is hit with more sinus infections. The dentist notices Lexi should be evaluated for braces. The orthodontist notices something on her x-rays. I make an appointment for her with our specialist; unfortunately we have to see his partner. Not a nice man; not a good doctor. Says there is nothing wrong. The school year starts with both sick; first one...then the other. Constant trips to the doctors. Antibiotics, lethargy, depression...etc, Will these children ever have a break?
I take Connor to a new pulmunologist who tests him for 900 mutations of cystic fibrosis. I hope to receive the results this week. Back with both children to the ear, nose and throat specialist who is very good. He thinks Connor might need sinus surgery; scary for me as a former pediatric operating room nurse. I know too much and I know how dangerous sinus surgery can be. Then he examines Lexi and determines that her adenoids have regrown, her allergies in her throat and nose are severe; she might need surgery. Dangerous for her because she has a bleeding disorder. Of course the doc is re-assuring...I know better.
It has been a 1% chance for all these illnesses and we keep getting hit. I feel so sorry for these kids. Lexi is still struggling with the mean so called popular kids, and Connor loves his new school; expensive for our budget, but is struggling with academics.
As for me? My symptoms are so much worse. The flashing, the weakness, forgetfulness, etc. When I ask my doctor he usually says to enjoy your life. When I had problems getting out of bed one week I actually went to a general doc; she told me I am lucky to be alive...If it wasn't for the children I wouldn't agree.
I am at a point where I just can't pray anymore. Connor told me, Mom I pray and "He" never seems to hear. We've had a lot of problems, but these last 5½ years have been non-stop. When a boxer keeps getting hit down, he gives up. I smile, laugh and try to encourage my children but I spend many nights crying. Please, say a prayer for Lexi and Connor.
I know exercise girl will write and tell me she ran a marathon and is now going to work a 12 hour shift...but you are not me. You don't have sick children; you don't live where I live; you may not struggle with your faith. Please...I am an individual and this should be a place for us to express our feelings. Most people cannot understand the brain injured; I hope my fellow brainer's can at least try.
As R.E.M. says...that's me in the corner, that's me in the spotlight losing my religion...trying to keep out you....oh no I said too much....I haven't said enough.
Update: 26 March 2007
My son's CF test came back negative...thanks the powers that be. BUT, He does have a defective gene sequence; classic case is boys, taller than average who present with reflux, chronic respiratory and sinus problems. The docs are talking about sinus surgery; re-checking the size of his trachea, etc. I wanted to cry. I wanted to beg the docs to do a formal study. Why? For years I was told it was the home environment: dust, mold, what he ate, what he didn't eat; second guessing me..and here it was!!! It wasn't my fault. Right now it's prednisone and augmentin..I have to be on top of it. SCARY !!
Lexi's adenoids are better; shrunk 10%; on hold for surgery, but after reading literature I really have to take her back to the hematologist for a complete work-up. It's been two years. WE have to see if there has been any changes in her Von Willebrand/hemophilia.
This has been some of the most difficult times of our life. My poor poor children; fighting like soldiers.
Just had a scare with the cat; think it was tainted food; Old mama, 171.2! Katie is another fighter.
I have to say a special thanks to Kim for always, always being there for me. There have been calls and letters and cards and even flowers..I love you!! Candy for her prayers and words of wisdom about what to do for my cat; I KNOW she gets it!! Love you..And of course thanks to Lisa (not a member of the family, a new member of my brain family; her Mom and I met at the pharmacy; she noticed me fumbling; we talked about brain surgery; Lisa suffered a hemorrhage from an aneurysm.) Gail who became my friend after reading my narrative and Joan, and Sherrie and Dick and Hank who always comes through...despite his own brave fight. Susan and if I forgot anyone...Ruth, Nonia...you know I appreciate all of you...named here or not. You are consistently there for me every day!! Praying not preaching. Trying to understand and help.YOU RAISE ME UP! In the words of Neil Diamond:
"I am," I said
To no one there
And no one heard at all
Not even the chair
"I am," I cried
"I am," said I
And I am lost, and I can't even say why
Leavin' me lonely still.
Update 26 July 2008
It's been a long time since my last update..so here goes: First let me say, what a wonderful, father like figure Bill was in my life. He was the wise man with great advice; corrected my grammar and spelling, and always offered me hope. I prayed to him for help during a difficult situation, and I know we all have an angel smiling down on us. You'll always be in my heart and soul Bill. Sending love and hugs to his family! Thank you for sharing him!
I left off about 16 months ago. What a difficult time we have had! My beloved katie cat passed to the rainbow bridge..171/2 years old; died in my arms after I told her it was ok to leave me. I will be cremated with her and my Coco..if I go to the rainbow bridge..it's ok. At that time I realized how cold people can be, and I gladly let 2 so called friends go; i realized that they always fed off me. A reason, a season and a lifetime.
I now have diabetes 2 and my bp high as always; high cholesterol..etc..it's all ok; getting it under control. My head though has been so bad. My mri last year showed a significant growth of scar tissue; not much can be done there. I have also developed a new herniation in a disc in my neck with significant changes there. Again, it starts at C-2..so girlfriend is not playing..!!
As some of my real friends know..and many of the family, we went through a terrible scare with my son. He was complaining of dizziness, and after a mri/mra, there was noted a significant hypoplasia in his posterior central communicating artery a major artery. WE sweated out waiting to see a world famous doctor for almost 3 months; pure hell. What he seems to think is because it happened in utero, the brain has learned to compensate; thus the normal mri. From there, because my son has been receivin poor grades, it was back to the ENT doc and it was discovered he has a learning disability; CAPD: central auditory processing disorder. If he was younger he would have a special listening device; right now we are trying to get him to study more; made the teachers aware, and hope we can make it through. Started speech therapy, but he never completed any of the assignments, so it wasn't worth the money. As you all know, money is so tight.
I beg for prayers from the family; as my close friends know, we are surrounded by evil here. WE are trying desperately to move; of course, we have the buyers from hell. They even bounced the contract check. In these trying times, we can't be choosy. In one and a half weeks, we'll know if they get their mortgage commitment; we found a house..I pray that it all goes through. We have already lost a house because of their craziness. I love this family, and thank Susan and Jim for continuing Bill's work and passion. I'ts been 7 years post stroke..and I cant say I feel better; the head is so much worse and it scares me; when you have children..teens and a needy puppy; you go on. Right now..we need a move; escape from the evil; and battle on to a place where there is some peace of mind. Thank you all. Sorry for typos; this is one of my deficits. A new one is going to the store; seeing 2 items; I need the one on the left, but come home on the right; do doctors know? of course not!! That, and this titanium plate hurts But hey!! i'm alive and I have my family and all of you!! All prayers appreciated so we can escape this hell hole........hugs marylee
Update 16 April 2009
We finally moved! we are in the suburbs of Long Island off the north shore. I love it here. It's great to come out in the morning, and not have to check whether my tires have been slashed. The torture we endured, was so unhealthy. We had the move from hell; the craziest buyers who actually bounced the check at contract; up until we had the closing, no one believed they would go through with it. At the walk through, they complained that the house was too small. All the crazies should be happy together. The owners we bought from weren't the best either. They hid major problems; left the house absolutely filthy...etc...but the school system is wonderful. Addressing Connor's ADD and central auditory processing problem. providing supportive help, etc. We found a church that is great. They have a rock band and the songs/hymns are incredible. Check out the song Amazing Love on You Tube. They have a great youth group which is great for Connor. yea! Wish I could find something for Alexis...the move has been really hard on her.
This was a difficult year for my children's health. Alexis has head aches, so I thought it best that she have an MRI; especially since so little is known about AVMs. it turns out that she has hypoplasia of her left sinus vein, and a borderline normal herniation of her cerebellum appendix. I learned from Connor's specialist that if the MRI is essentially normal; you leave everything alone. That means the brain is compensating. These other diagnosis come from mra/mrv. I just wish for once a doctor would say the word normal. I'm now sweating out the results of Alexis blood test. She's been so tired. It's ironic that my insurance wouldnt pay for me to have one. I read about incidental findings, all they mention is that it occurs in 7% of the population..what does this all mean? I had the AVM..does that mean abnormalities run in the family? Does anyone care about brains? Are we just concerned about which food group will be bad for us today, but good for us tomorrow? I just dont get the medical field and research. Why isn't the brain a priority? So many of us struggle to find answers, but I find....most doctors dont know..and dont seem to care. I went to a neurologist out here and she didnt even examine me. I asked her about my concern with the growth of scar tissue in my brain; she shrugged and said she doesnt know anything about that. When I mentioned the new herniation in my neck, she just wanted to talk about her dog and what leashes are better. This is not the first time I had a neurologist like this..i've had quite a few. I think they're the wackiest docs around. Now do I go back to Brooklyn, where the doc at least examined me, and agreed to an MRI, or try a new one here? I don't know. Right now I'm going through a cardiac work up for irregular heart, high bp, cholesterol and diabetes..wow, getting old and having a positive family history for everything isnt great.
I have wanted to address so many of the people who have written updates, but with one computer and 2 teens, I dont get much computer time. I'm with John; feeling the apathy...wanting to get upset about not working, and feeling alone and tired...but just not able to get up our fighting spirit. I feel like Terry..angry about docs who just dont seem to care... trying to fight the system. I understand Eddie...why are we symptomatic and growing scar tissue? Can anything be done? What happens if it keeps growing? Is there anyone who can help us? Don, searching for years for answers to his questions and problems. come on man; if you don't know doc, please offer us some hope and referrals. I'm sure I left people out...I forget...but I want to say I love the updates...it's good to know where everyone's at, and to offer hope or at least hugs to the new family members.
I have so many people who are like family, and one person...who feels like a sister. Kim, you never let a day go by without a word...I do feel alone...but I know you're near in heart. Big hugs , for all my special friends who have been with me on this journey. the dizziness, the increased flashing etc, is scary, but I KNOW YOU ALL KNOW. THANK YOU.
Francisco Rodriquez wrote a sad letter about being told many different things from docs. I have had that experience many times. I was told to take fiorocet every day to help my headaches. When I tried to see a new doctor a few years ago, he literally freaked that I was doing this. He told me if I ever tried to stop I could have serious seizure activity. I continued to take them; future neurologists didn't argue with that. Recently I have read many articles that fiorocet can cause more trouble; in other words they can Cause headaches; I believe they are called rebound headaches. It began to make me wonder, on my own. The more I read; the more concerned I became. I recently had a bad bout of bronchitis and the doctor, callously told me, "you are addicted to narcotics" that made me say. that's it. I'm stopping. I slowly weaned myself off; I know my body, and now I only take them when absolutely needed...like today. I also took large amounts of Motrin because of my neck herniations; I've had a hemorrhage; docs didn't tell me not to. What else could I use for pain? Now since I've had some abnormal labs, I've cut down on them too. I really think we know our bodies; and we have to realize most docs don't know anything about brain injuries; it's just not on the top of their list. We wander confused from doctor to doctor given different information. I wish everyone the best...and here's to pain free days. Cheers,hugs Marylee Arnold
Update 23 August 2009
Ithought I would update while I have a new picture posted. I want to say how touched I was by an e-mail from a member of our family. Denise lost her daughter to an avm. For her to take the time to write me..I'm just blown away...then again, this is who our family is...compassionate, warm people, who support and pray for each other. Let us keep our cause alive , for people like Denise. please say a prayer for her. As for me; the mri showed arthritis in my neck. Ironically, the report didn't even mention the herniations; at this point, what does it matter?
Ijust want to say; don't take whiplash lightly. There's even a whiplash support group. As for the scar tissue; it seems to be the same. We all know, the blood from the hemorrhage is never completely absorbed. Eddie, is not alone with symptoms, that can't be explained. I have the flashes, weakness etc..too many to mention...but...the docs don't have a darn clue. The doctor , at least was concerned by my advanced weakness and neuropathy; at least she examined me. From there? it's one second at a time. Eddie pointed out...he worries that it's all in his head...oh it is...the effects of damage and surgery. I am grateful to Susan and Jim for asking people to update. I notice so many similar problems. most of us at the 6-10 year anniversary, become more symptomatic...many of us feel isolation, and an inability to process too much information. Again, the brain is so complex.
I'm grateful to them; to my special friends ,and to all who suffer silently. I am grateful for all of you. Again, as alway, I apologize for my typos, poor grammar etc...the least of it all. I'm glad you enjoyed the picture of my children. For those who have been on my journey, you saw children turn in to beautiful, thoughtful adults. as for me...I look so old and hate that pic...who needs to see the truth staring back...but I liked the way Alexis and Connor looked. I am blessed. May all in this family be touched by health of body mind and soul. May you be touched by that all too elusive peace of heart.
Lots of hugs
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Arnold
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