Donna-Lee Roy
This story is written in Donna-Lee's own words. No alterations have been made.
Let me Introduce myself my name is Donna Lee in 1991, I was told that I had A Spinal Cord Arteriovenous Malformation, I was 8 months pregnant with my beautiful Daughter, had no Idea what was Happening to me, when I was awakend by a Horrible pain, Nife stabing feeling fr the left side of my neck down to my toes, I screemed so loud, woke my mom up and Husband at that time, My Mom got me Dressed my x husband had taken me to the Hospital , when the doctor came in they did some testing & X rays they told me I had a pinch nerve, gave me some medication and sent me home. the pain even with medication was not going away.
the next day had to go back to the emergency where they admited me into Hospital. they then had physiotherapy come to me and proceed to put 5 pounds of weights in the back of me and straped my neck in this device, as day's went by more medication and more weights where added up to 10 pounds to stretch my neck. they still beleived I had a Pinch nerve in my neck.
my Family doctor arrived fr his hollidays two week after I was admited and could not beleive I was in this condition, he immediately asked for a specialist to check the baby, I had was Dilated to three.
they where then scared that all the heavy medication they had me on was going to the Baby, I was given injections of demerol and morphine every 3 to 4 hours and still in alot of pain.
the doctors then made a decision to transfer me to another Hospital in Moncton New brunswick.
Once I was in the Moncton Hospital, I went for a cat scan withch once again showed a pinch nerve.
Then labor started, the doctors where scared the baby would be an addicted baby since They had me on so much medication. 10 hours after my beautiful little Sara was Born, specialist checked her fr head to toes ,she was a perfect little angel , but the side effects of the medication made her a very sleepy Baby, she sometimes slept fr 12 to 15 hours befor waking up, we would bath her feed her change her all while she was still sleeping , they assured me that as time went by she would become more awake, as time went by I still had a sleepy little angel,she was like this for almost one year.
after 2weeks in Moncton hospital I then came back to my Home in Bathurst new brunswick, still having alot of pain , not feeling my baby in my arms,was so scared to drop her, still see myself to this day holding her with both arms so tight, could not understand what was happening to me, when lighs would go out at night I could no longer feel my body, did not even feel if there where blankets on me, went back to my family doctor ,he thought i was having postpartum depression, I was crying alot but cuz I was in pain , but there was one thing he could not understand was me not feeling my body, he then referred me to a Neurologist that was coming to bathurst in a week fr st john new brunswick.
the day was here where I was praying for this doctor to find my problem, he did some simple test in the room I was in, he took a straight pin and told me to close my eyes while I was sitting on the bed, he was asking do you feel this, I would reply No. told me to stand up and close my eyes to try to bring one foot off the floor, he had to hold me as I was going to fall , asked me to walk one foot in front of the other , could not do this as well with out stumbling, he after 30 mins of his testing told me to go get dress that he was going to talk with me, I came back sat down , he then told me I know there is something wrong dear, I will half to send you to Halifax Nova Scotia, cause it was the only place he new where he could get me in fast to have an MRI done.
I left still not knowing what was wrong, in one week I was in halifax having my MRI, two and a half hours in this MRI ,scared to death, being closterfobic, they had to stop the machine and take me out as I felt i was chocking, they then Brought my friend in so I felt more secure, she stood behind the machine and would talk to me as the MRI was taking pictures, I felt a bit better just knowing someone was in the room with me , when it was finaly over, they took me out and I seen a room full of Doctors ,I was Terrified and still no results , I asked why I could not no anything , they told me it would not be long that my Neurologist would give me my Results, came back home waiting for my doctor to call me for an appointment , Finally he called to see me.
Results are in, my friend and I went to the hospital, he called my name, I walked in asked me if I was alone? told him no my friend is with me so he went to get her, oh my nerves where shot , he sat her down beside me and said .
Donna Lee I have Some bad news, my first thought was oh my God im dying!!! he said I can not say that all I can say is what we have found, so I braced my self holding my friends hand, he then started telling me first thing I have to tell you is we do not no very much about what I am going to tell you ,I said ok.
he then tells me the MRI has found out what you have but how do we treat you I do not know, the only thing he and the other radiologist and neurologist new was that I had an arteriovenous Malformation inside my spinal cord. he felt the Best place for me to go would be London Ontario.
I left with my friend crying & crying not knowing what to do, two small children at home my little boy 4and a half my nmew born baby what was I going to do ? I had no choice in going to london my Mother and familly looked after my childrern. I am leaving for London ontario it is a big day , with my suitcase not knowing what to expect, once I arrived they made me feel so welcome , the nurse said Welcome to seventh Heaven. as I was on the seventh floor.
the next day lots of testing , scans, x rays , another MRI , Angiograms, ect, ect, days ahead testing again for about 15 days befor they performed my Operation. I was told they had no Idea how the out come of this surgry would leave me , there was even Death on the operating Table that could happen, becoming Quadriplegic, but there was one thing they did know, was with out the surgry Once I became Quadriplegic there was no way they could reverse it.
I was so sick by this time there was a very slim chance of me overcoming this Surgry. I am the doctors Trooper as they call me, I was in the Hospital for three and a half months and one year of major Rehabilitation. Iwill continue my story in the days ahead
Continuing my story on my Illness , AVM Spinal Cord
one year later I am home still in so much pain , trying to learn how to deal with everything that has happened to me.
we are now in March 1992 going back to london Ontario for more testing on my spinal Cord. I am still in alot of Pain. Scared out of my mind once again, having no choice in Leaving my 2 small children again. I will never forget my Mom's words as she said to me . Do not worry about nothing, Mom will make sure your children are Fine. I just want you to think about your self & getting better.
it was very hard for me to do this , but I knew my children where in good Hands with my Mom and my Family. I am back on seveth floor at the University Hospital , where I was met by the same staff as the year before, WOW how they where so Impressed by seeing me walk and doing things they never thought I would ever do again. Morning is here, time for my MRI once Again , Angigram procedure , ect, ect.
the next Morning I am seen by physiotherapy and occupational therapy, as they are now checking my strength in all my four limbs , to offer you an example they used a jamar dynamometer,gave me 2 kg on the right side and 5 kg on the left.
at 27 years of age I should have measured on the right side 33.8 kg and on the left 28.8 kg . my grip strength was well below functional limits. The debilitating effect of these problems, should not be underestimated. in my doctor words.
they come in my room once again in the morning with the team of doctors and tell me , right now the only thing they can do is send me to toronto. Toronto I say , why??? we think there might be a chance that you can have help with your pain. we can not touch your spinal cord right now ,there is still some AVM left . my nightmare begins again.
I started crying uncontrollably , they gave me some medication to try to relax me , finaly starts to work , I am calming down.. they start telling me what Toronto can try to offer me , I listened very carefully. since I was on so many various types of medication they felt this was my only hope for the abolition of my pain for now. so off to Toronto I go.
I am now leaving London On for Toronto I am staying with family & my Dad in Toronto as I wait for my call. to be addmitted to the Toronto Western Hospital , one week later I am being addmtted. Where I am Seen by one of the best Doctor in his Field. he explains every detail I need to know , the First is that I Need a Halo placed on my head . it took 2/ half hours of drilling as I am wide awake sitting on a chair, she starts by freezing my head & once freezing takes affect she starts Drilling into my head, the Blood is pouring doun my face as she wipes it away, I feel no pain from the drill just alot of pressure in my head. she tells me this is Normal. I am now prepared for the big day of surgry with my Halo on,I make little jokes.as I must be an angel by now , she gigles with me and wishes me all the best.
it is now the day of my Brain surgry I am wheeled down on the stretcher, they put me into a little room ware they begin to shave the top of my head. this part is done, now wheel me into surgry where they get me ready for a 12 hour surgery.
I had to be almost in a sitting position as I needed to be awake for this surgery ,I could not feel my body neck down when I did not see. it is 8 am in the morning every thing is going as planned , I can see what they are doing to me as there is a surgical cabinet in front of me, I see the Drill going in my head,The Jigsaw cutting my Scull, right now I am very scared but only feeling alot of vibration in my head and ears. as the day goes by they keep asking me to move a finger my hand my toes ect, so they could Attempt to put the debrain stimulation in the right position.
8 pm in the evening they have finished . I am now in recovery room. the next day my pain was getting much worse than it was , But I had to leave it in for a period of 48 hours.
for 48 hours all I did was cry , please take this out I'm worst of, still had to give it 48 hours . since the stimulation was just like it was giving me electric shokes, something I already have fr my neck down , Finaly 48 hours is here ,Back down to surgry I go to remove the Stimulateur , 2 hours after it is all over .
I am not sorry I trieded it cuz I would have always wondered would it have worked.
I will continue my story in the Days to come
continueing my story on
Arteriovenous Malformation Spinal Cord
it is now in the fall of 1994.
I am starting to have alot of problems again, as my AVM smptoms are beginning to start again.
Oct 18 1995
once again having to leave my 2 small children , but knowing they are in very good hand , with my mom & family , My son is now 8 and my Daughter 4 . oh my here we go again is all I can think.
I am leaving on the train this time , where a very good Friend of mine will be picking me in London ON. God Bless her
I was readmitted to the London university Hospital
where lo't of testing is going to take place once again,
I am back on seventh floor as allways ,
where I am Greeted by the staff & Doctors
morning time comes arround where they are getting me ready for another angiogram
blood work , MRI , ect, ect, as the days go by.
my Doctor and his team come into my room and say I am back in the same possition I was in 1991.
we will have no choice in doing surgry once again.
I am now down in the chaple crying and asking God to help me as I have 2 small children that need me so much. praying so hard for the outcome to be a good one . it is evening, I am now talking with my Mom on the phone crying telling her that I need Surgry once again, she tells me Donna put it all in Gods hands & you will see things will turn out, Mom has alot of Faith in God and you. you are very strong willed and I know your going to pull through. I said goodnight to my 2 children , told them that as soon as mom would be able to call them I would and that I loved them so much, big hug's through the phone and Kisses as I did not want to hang up. I once again feel like I am going through a nighmare ,I just want to wake up
the big day is here once again , where they are wheeling me down to surgry, they are now going to shave the back of my head as this is done, I am feeling a very warm feeling like I have never felt befor, so warm that it was comforting, I have no dought that it is all the prayers that all of my family and home town are saying for me
8 hours after surgry is done. I am now in Intensive care for 48 hours. I start waking up little bye little remebering my friends face. the doctors come's in, tell me once again Donna Lee we did not get it all. my heart rate was starting to go very low as surgry had to be stopped. I have a Long road to recorery with alot of reahabilitation. I start my rehab in the London hospital then they are flying me back to Moncton New Brunswick where I continue for 2 Months
Finaly I get to go home & have Occupatiional therapy and physiotherapy come to my home every day for the next 3 months.
I have come a very long way, as people who do not know anything about me would think there is nothing wrong with me. to this day I still live with alot of pain , very hard time with my hands for griping and holding things. I have lost the coordination in my wrighting skills , I can wright big but have a very hard time when it comes to in between lines, holding a coffee cup, it has to have a big handle, when I do not see I still do not Feel fr my neck down
I thank each and every one of you for reading my story as I want to bring Awareness to this horrible condition Donna Lee