Jennifer Lynn's Spinal AVM Support site
Hi my name is Jennifer Lynn. I have two beautiful girls. Kelsey my oldest just turned five years old. Kaleigh, my youngest is three years old. I was 23 years old when I had my spinal stroke. There are so many things I miss, and so much going on in my mind now. Why me of all people? Was I living my life right? So much still unanswered.
On December 17, 1998 it happened. Most worst nightmare only I didn't understand it. I woke up very late in the afternoon. I guess it was about 3:00 pm. I rolled out of bed feeling a slight pain in my lower right side of my stomach. (thinking it was gas) I thought nothing of it. I started to notice I was getting very, very hot and weak too. I walked into the kitchen to get a Pepsi as I always did. I really started to notice the pain was getting very intense now. I walked very slowly to the bathroom to start up a bath. I started up a bath and then, Bam! It hit!
I grabbed my side, which felt like it was on fire. Then tried to walk out of the bathroom. Something was wrong. I mean really wrong! My legs became very weak now and the pain was unbearable.I made it to the living room and fell to the floor. The pain would hit like a labor pain but 1000 times worse!
All I could think about was getting to the phone. See I was all alone at the time. My boyfriend Paul had went to the store. I had no idea when he would be back. So I knew 911 was the way to go. The pain was making me scream and lose all breath. My tongue was almost cracking from hyperventilating. This all happened in about 15 minutes.
Just then our Rotweiler "Jazz" was running around loose in the house. I knew I had to get him put up before help got there. I crawled toward the bedroom and yelled for Jazz to get in there. The only thing was, I could barley see him. I got very frustrated with that. What if I waste all my energy getting him put up and can't make it to the phone? Everything was getting so distorted now. I couldn't think straight at all.
I lay on the floor cursing because Paul had gone to the store and wasn't there. I cursed because of all the pain I was in. And I cursed at myself for not having god in my life as much as I should of.
I got the energy to get to the couch and get the phone. I lay back on the couch on my back and called 911. I was crying for them to pick up. The pain was much too much to really think of anything else though. Finally on the third ring the lady picked up.
911, What is your emergency? H-e-l-p, very slowly and weak I said. Help! The lady asked me what was wrong with me. I couldn't tell her! Mam what is your name? I again couldn't answer! It all became confusion to me. So I lay the phone on my stomach. I cried and thought, this is it! If god wanted me, I was going to go! The pain was too much!!
Just then my boyfriend Paul walked in. I felt right then that everything was going to be okay. I know he wasn't a doctor but it made it all better. I couldn't believe it though when he walked in. He looked at me and while asking what was wrong, he turned off the phone! Can you believe it! I scratched out 9-1-1! Call 911! As soon as he picked the phone back up it rang. It was 9-1-1 calling back. Oh thank god I thought!
The ambulances would be here in just 2 or 3 minutes. I wasn't sure if I was going to make it until then. I kept remembering that they would probably give me pain medicine. Knowing the pain will be gone soon is all I focused on. In the meantime Paul hovered over me trying to figure out what was wrong. I wanted the pain to stop just so I didn't have to see him that upset. It was like I was going to die and didn't know about it. He tried to keep calm and did a great job doing so! If he wouldn't of gotten there when he did...well I don't know!
The ambulance pulled up and so did the fire department. What would our neighbors think? They rushed in asking me all kinds of questions. They gave me oxygen, which helped a lot! Paul had to answer all of my questions for me because I couldn't. He answered everything right for me.
They asked all sorts of questions. Like what other health problems do you have. Well I also have Grave's Disease. I have to take hormones called Synthroid. I had radiation to remove my thyroid in '95. This all happened after Kelsey was born. So when they asked Paul these things, he knew exactly what to say!
I was rushed to the hospital only to be sent home still screaming with bronchitis! Yes, bronchitis! I even lost the use of both of my legs. That's right, I sat up screaming at the nurse! I screamed, I can't move my God damn legs! And nothing, I am still sent on my merry way. The reason they suspected this was because I was so hysterical at the hospital I was coughing up excess phlegm. So I am sent home on antibiotics and 8 Darvocet. I was told at the hospital if I am still not able to use my legs or am still in pain to get a hold of my family doctor.
So of course I can't get around and am still dying from the pain I see my family doctor. I finally got in after a week and a half. Dr. Hough immediately suspected a stroke of my brain or a brain tumor or MS. He sent me for a brain MRI. It showed nothing. He didn't think he could help me so he sent me to a Neurologist. Dr. Pegg, did a bunch of tests on me and concluded that I had transverse myelitis. Which was much like MS. He gave me some new kind of pain pills and sent me for a spinal MRI.
I met up with Dr. Pegg two weeks later at his office. I was told that my spinal MRI showed some lesion in my spinal cord. In order for them to see what the lesions were they need to perform a test call an angiogram. I was sent to Dr. Kettner, a neurosurgeon. I was then sent for another spinal MRI with some specialists. One of which performed my angiogram later. Her name was Dr. Roth. She was wonderful! Right after the spinal MRI she ran out to tell me she read my MRI and knows what the problem was.
She told me that it was an AVM that had bled and left a blood clot in my spinal cord. She explained what a angiogram was and set it up. She explained that she was going to try this method called "embolization". Which meant she was going to try and "glue the bleed shut". Two weeks later I was on my way to surgery.
Unfortunately the method failed. This proved to be the worst and most painful four hours of my life! After I was fully awake from the test, Dr. Kettner came in my room to tell me the awful news. Since the embolization failed there was one other option. Major spinal surgery. Dr. Kettner then brought in a heart and lung specialist.
They preceded to tell me what was about to happen to me. First they were going to make a very large incision on my back to remove a rib. They needed to remove the rib so they could get to the bleed. There would be a second incision to remove the AVM and the blood clot.
I broke down in tears. Forgetting that I had a roommate in my hospital room I started to cuss about wanting to just get home. The thing that made me feel good was kind of strange. I guess all the crying got to spreading because my roommate who was 67 years old by the way started to cry too. She cried over to me, and said you are gonna be okay Sweetie...We'll be okay! I felt so at peace for a moment. I went around and hugged her and we exchanged numbers.
Well the surgery was set up for February 17, 1999. Surgery was a bit more than I thought it would be. The first thing I remember is when they woke me up to move my toes. I was laying on my stomach and looked down. I cried "look I can move!" "I can move!"
I did have a 12 inch scar over where my right ribs are. I also had a 5 inch scar just below the back of my neck. I found a chest tube to be in my right side which hurt bad. I had wires everywhere and tubes everywhere. The worst tube was in my throat. I felt like I was gagging all the time!
I was told I was a miracle! I had a 50% chance of living, and a 50% chance of becoming paralyzed. I am the one and only (I hear). I was told that there were only 7 others with this type of AVM. It was also found that I had two types of an AVM. I had type 2 and 4.
I had to learn how to walk with my right leg. I have finally graduated physical therapy. I only went for 3 months and have a noticeable limp. I am told that I should get it all back. I am told I will be in a large amount of pain for more than a year and I was just turned down for Social Security. I don't complain about the walking because that I can and will do again. What I do complain about is the PAIN!
I plan to get back 100%. After I get myself back I can pick up my life again. Not the old life, but my new one! I guess in ways having this stroke was one of the best things that has happened to me. It brought me and Paul closer than ever. I hope to hear our wedding bells soon.
As for my beautiful girls, they are with my parents 6 hours away. This makes it very hard to see them,especially since I can't take care of them. Shoot, only one month ago I couldn't even brush my hair, let alone pick them up. As soon as I get better they will come to live with me and Paul. These are not my dreams - this will happen. This is what matters to me the most!
I have been playing guitar for three years and am now finally able to pick it up again. I also write much poetry. Here is some I wrote since my stroke.
Trial, after trial after trial
god only knows I've walked the mile...
Smile, smile, smile
here I go again, I'm in denial...
Don't worry about me, I'll be okay
ask me of my life, listen to what I have to say...
I may be here today, gone tomorrow
I'm gonna be okay, no need for your sorrow...
See an angel, he sent me a sign
he told me I'm gonna be just fine...
So all those nights of crying, those nights of "pain"
see, they were just driving me insane!
I looked up high, way past the sky
I cried, please just give me one more try...
He looked down at me down at me, with a great BIG smile
and said... don't worry Jen because this is your last trial
Hope you enjoyed!
Update 11 Jun 1999
I have been having some scary problems. I have been losing feeling in my left leg. It is not asleep, it feels like it is there but I cannot feel it. At the same time I have been experiencing pain in my side where I had my stroke, sick to my stomach, and very hot in the face. I am experiencing these episodes at least 5 or more times a day. I finally had enough and called my doctor. He sent me for a spinal MRI. This lasted for 2 hours. I am sure everyone knows the stiffness and pain that comes along with it. (Especially the itchiness) When it was all over with I ask Dr. Roth what was wrong. She preformed my first angio. She told me she didn't see any bleeding or swollen blood vessels,but...She needed to talk to my doctors about this though. So I asked again, am I okay? She replied, there are a few things I need to speak with your doctor about. Then immediately asked when was my next angio going to be. I told her the first of July. Well it was moved up to next week.
The worst part of it is both of my doctors are out of town! My neurologist and neurosurgeon! I hope they get back soon. I suspect my AVM was not completely removed. I hate to think that it is. That would seem to put my life on hold again. I just want to be with my girls--so I hope this is not going to be another set back. I will update you when I get the news myself the 17th. Thank-you all for you support and love!
Update 23 Jun 1999
Well, everyone I went to my doctors appointment and there is good and very sad news. I didn't want to put this update up because I thought it would of been different news. Well here goes, the good news first.
I am not bleeding nor is any of my vessels swollen in any way. This means I didn't have another stroke. I still am losing feeling in my left leg. I was put on a muscle relaxer which takes 2 to 4 weeks to work. I just really would like for the pain to go away! See when I had my surgery after my stroke my doctor had to cut one of the nerves in my spine. That nerve made me become paralyzed on my right side of my stomach all the way to my back. That is where a lot of pain comes from. That and from where I had my stroke at. Now to the news that disturbs me enormously.
My AVM was not completely removed. I am pretty upset over this. Although I am not going to turn my life upside down again. It has been 6 months since my stroke and 3 months since my surgery. I guess a little self healing won't hurt. I have a juicer and plan to go back to my old ways after the stroke and eat only fruits, vegetables, fish and chicken. This made me very healthy for my surgery. Even my doctors were amazed on my quick recovery. I was out in only 6 days. I won't feel self pity because there are so many,many others who need God's help more than I. Especially my good friend Peggy Ashe. Her daughter Elizabeth has thousands of AVMs. Please take a moment to read her story and write to her. She could use your prayers.
I will be okay no matter what happens. I want to thank all of you for your support! I think sometimes the only time I cry is when I am here with all of you. I finally found the friends who would understand my fears and joys no matter what. God bless you!
Update 7 Jul 1999
I went to my doctors appointment this last Wednesday, and my neurosurgeon read my MRI's. He confirmed that there was something there. My other doctor said the same thing...I guess I wanted him to have read them wrong. First off, all the pain I am having is not all normal. He is going to send me to a thoracic surgeon next month. They will probably put a brace on my ribs. Because they removed one from my spinal surgery. I feel crooked and much pain from this. Another thing is that he moved my angiogram ahead to next month. He wants me to have more time heal. He says I am doing very well though and not to worry...although this is hard.
I did the local news this past Friday. It went very good! Maybe that one person that watched will remember what I have said and will survive!! The thought of saving someone made it all worth it!! I never knew of an AVM. Well you bet your bottom dollar I do now!! So maybe that one young person will take time to listen...and they will remember! I thought I stuttered alot, but when it was all said and done...I have to say I looked good. If anyone would like a copy, just send a blank video tape and I will copy it. LOL..
Now I can only hope everything will work out just fine! I spent 5 days with my girls this weekend. that was the most I have seen them in 7 months. I even ignored the fact of my 12 in and 4 inch scars on my back when I put on a bathing suit and "hopped" into the kiddy poll with Kelsey and Raleigh! I was worried how I would feel since this was the first time I wore a swimming suit since my stroke. I am gonna be just fine, don't worry about me...see a little angel told me I was gonna be just fine..he gave me the sign!! Thank you all for your wonderful support and insight!
Update 3 Aug 1999
Well on July 28th I had my angiogram...this time I was passed out!! Thank God for that!! Unfortunately, I got some very disturbing news... My AVM was not completely removed as they already knew. I guess before my surgery my AVM had three feeders to the AVM and 2 were removed. At the end of August I have the 3 top specialist in the world coming to review my case since it is so rare. I was told surgery would probably make me become paralyzed and radiation would prove to probably do the same... And the last thing they could do, would be to just leave it be.
That puts a time limit on my life I guess. Right now I wish I could say something to let you all know I am okay...but I am not that strong today. I am feeling pretty down. I am only 24 and it is my life or my legs...I am sorry I am so selfish, but I would rather have my legs, then a unhappy life without them. I do not know what my decision will be..to do the surgery's or to do nothing and let God take me when he is ready..I hope that the doctors can help me without hurting me more.
I know it is selfish...but I have girls that I need to run around with and tickle and play hide and go seek with...how do I do that without me legs..will they understand? Will Paul? I will let you know when the specialist tell me what they are going to do with my life. I guess things just have to sink in..Ya know? If anyone has gone through something like this...please let me know. Did you make the decision to keep your legs? Or your life?
Update 28 Aug 1999
Well things got a little bad for me on Wednesday night. About three in the morning I had some kind of seizure. It was only in my legs though. It lasted for an hour an a half. I went to the ER and I decided to leave because they took over an hour to get to me. I knew the seizures were going away and my doctors office would be open soon. So I decided with only having to wait an hour longer I would go to my doctors instead. Besides he knew my body better than any one else did.
Well I went to my doctors at eight am. He did an MRI which lasted for an hour and a half! The findings were...there was no bleed but I had a problem. It is called "STEAL SYNDROME". Does anyone know of this? I am told I may have emergency surgery tomorrow morning. I am just awaiting the phone call. If anyone has any information of this, could you let me know about your situation? Thanks. As far as the TOP THREE specialist. They are here tomorrow, (August 27th) I am pretty scared. Tomorrow could be the last day I have my legs. This is why I wrote so soon. There may be alot of things going on. So for now this is my update. Thank you all for your wonderful support!
Update 26 Oct 1999
The specialists did come at the end of August. They all decided that my AVM was inoperable. They said the radiation could very well kill me too. So that is out. And they don't want to go in using a catheter because it could make me have a major stroke on the table. I was also told I may not just lose my legs but I could very well lose my arms too. Because the AVM is so high in my spinal cord. I was told if I did have another stroke it may not turn out good for me. I would be flight lifted to the University of Ohio. There a team of specialist would meet me and perform a catheter procedure to remove the AVM and bleed.
I wish I could say it won't bleed again but I know the facts. I guess we all do. My chances of living through it are less than fifty percent now. The same with losing my legs and arms. I guess I have to live with what is happening now in my life instead of my future.
I am doing much better these days. Life seems to be treating me a little better. I am back in physical therapy. I have fallen out of bed too many times for my knees. They want me to have a walker so I don't fall as much. What really bothers me is I am 24 and have used a walker already and now I am going to depend on one again. I know I will never get it all back I just want to start depending on my own legs to get me where I need to go. Sometimes I can't even feel me legs, I wish that would go away. I guess it is someone's reminder to me to be thankful for what I do have...instead of what I don't...
Update 3 Jan 2000
Well I have had a few ups and downs lately. I had to go to my doctors recently because I fell down a half a flight of stairs in my home. Gosh I wish that didn't happen! I had allot of swelling and some pain. but that was the least of my problems.
Dr. Kettner my neurosurgeon, said that he and one of those specialist decided to go ahead with this surgery...they decided to go with the catheter procedure. They are not very hopeful that I will come out okay. They are especially worried that I may have a major stroke because they will have to travel a long distance through my spinal cord. I have just been so stressed out lately from this. The reason they decided to go ahead with the surgery is because...the vein that is the "feeder" to my AVM is growing. Not the AVM but the feeder. And this will most definitely bleed soon. It will not be able to withstand the pressure of the blood flowing.
I am doing so many things to help strengthen my veins. I have only found out that there really is nothing I can do. I take all kinds of vitamins and herbs...but nothing. At least everything else in my body will hold up...I hope! As soon as I find out when and where I will update all of you. I just want to say thank you to all of my new and wonderful friends for being there! I only wish I didn't have to be sick to have met you!
Update 18 Feb 2000
Hello everyone! I am sorry I did not write sooner. Dr. Kettner sent my films to Dr. Spetzler in Arizona to decide if I should have the surgery. Well I just found out that they decided again that there was no way they could do anything. . .It is inoperable! The doctors said there is just too much scar tissue. They are afraid of a major stroke occurring during surgery. So Dr. Kettner said if I had any problems to call him immediately. He wants to be paged if I go into the hospital for any problems. He makes me feel like he is trying to really help me.
I recently asked my family doctor to put me on some kind of anti-depressant because of everything that was going on. He immediately put me on Zoloft. . .it is kinda helping. . .it needs a few more weeks and I will be able to tell if it works or not.
Everything just kept pilling up on me at once. I wonder if I can still get my girls knowing the possible outcome?! Does anyone know if the law is on my side? I hope so!
They already scheduled my angiogram for December of this year. I won't be looking forward to that! Everything else can finally come back together. It is hard knowing my fate. . .but I still have today! And all my wonderful new friends! Thank you!
Update 22 Mar 2000
I just wanted to share with the family some very exciting news! I met a great girl named Kari Anderson. We have been e-mailing and calling each other since December of '99. Well Friday, March 17th. I finally met her!! Come to find out, she has almost the exact AVM as I do. Her spinal AVM is only one inch from mine, and she also has the rare AVM as I do. In fact it is so rare I was told that I shouldn't even bother looking for someone with these types of AVM's. In fact while I was staying with her we called my neurosurgeon,Dr. Kettner and she was able to make an appointment with him. I want her to have the best and I know if he can't do anything he will send to the BEST!
I just have such a big weight lifted now that I know someone else has and understands what I feel. I met her whole family and they are the greatest support anyone could ever ask for! In fact they told me that they now have another daughter! That felt great! Before we ended our visit we decided to get something to remember each other by. We went to the mall and bought two beautiful silver bracelets. On the top of them they read: Spinal AVM and on the reverse side they read Jen and Kari. When I left I felt so so sad. But we won't part for long because she has an appointment with my neurosurgeon April 10th!
After the sad new of Elizabeth Ashe passing I decided to meet Kari...because we all know we may not be here tomorrow. So if you have that special someone that you would like to meet, do it...so you will never again regret it.
Update 4 Jul 2000
Five days after going to disability court I received my letter! I was "Fully Approved!!!" They stated that I was severe under the disability act but I could improve. . .so I hope too. . .I have to say that I am extremely excited! I will receive another letter within 60 days letting me know how much and when I will receive a check. If anyone would like to see all of the papers from the judge let me know. It goes into detail about my ongoing problems. This makes me feel like maybe just maybe things can go right..ya know. Thank you all for your grand support!!
Update 7 Nov 2000
I just wanted to let everyone know that I am having surgery this Wednesday at 9:00 AM. This surgery is hopefully to take away some of my pain. They are going to cut three of my intercostile nerves under the T-6 thru T-8. They are going to do what 6 nerve blocks and 1 freeze failed to do. I am at the point where I finally cannot handle the pain. I am on high doses of pain killers. I feel useless and like a zombie. I lay around all the time because of the pain and I feel like I am going crazy. So I am praying this surgery helps. They are not sure what is causing my pain...so there is a chance this will not work. I just hope it does.
Well wish me good luck and I will post an update as soon as possible. Also thank you everyone for your support...I needed it!
Update 13 Nov 2000 (Submitted by: Kari Anderson)
I just wanted to pass along an update for Jennifer as she had her surgery on the 8th of November. I talked with Jen on Thursday night and she is home and recovering...doing very well. The surgeons removed the mesh cage around the area where her rib is missing, thinking that she may have been having allergic reactions to it. They also cut some nerves to see if that will help alleviate the pain.
Jen asked me to post this update for her, as she is not quite up to writing as of yet. She is doing great and we just hope and pray that this does the trick. She wishes to thank each and every one of you for your support, thoughts, and prayers!!!!!!!!!!!!! She will be posting another update sometime soon!
Update 16 Nov 2001
I want to apologize for not posting my update sooner fellow AVM survivors. But here goes. I underwent a surgery to remove the marlex mesh from my rib cage. This was there to protect my organs since one of my ribs on the right side is missing.. Well I was cut about 12 inches over the old scar for nothing!!! It did not help and in fact I hurt more. I didn't know how to accept this. I was told nothing could help. NOTHING! The meds I am on mess me up so much! I just wonder if my cardiovascular surgeon did something wrong when he remove my rib?? Because I had a different type of pain before surgery! And I left with the same pain, but also a whole new pain that was much worse than I could have imagined! So I still suffer allot of pain!! With no cure in sight, I would love suggestions. I take percocet. The morphine pump will not work nor will an epidural stimulator..So I am open to suggestions. Thanks.
Update: 8 Feb 2003
I want to let everyone know that I am having surgery next Friday. I am having an spinal cord epidural stimulator placed into my spine above my AVM..The pain has become too much on me and all of my options have ran out...so I am going to give this is shot. I have a temporary stimulator put in for 7 days. Then if this works, I will have a permanent stimulator put in. I will then be able to control the pain relief with a battery operated control..to any part of my body. It is supposed to stop the pain signal from reaching the brain.
I also wanted to share that December 17th I had my 4 year stroke anniversary. Then this February 17th it is the 4 year anniversary of my AVM surgery. Also on this day my daughter will be having surgery to have her tonsils removed. I am so upset that I will not be able to be with her on her surgery day..due to my surgery. I will be on complete bed rest for about two months so that the stimulator does not move. I also got my results from my MRI and my AVM has NOT GROWN!! I also celebrated my 28th birthday on Feb 2nd. So it looks like this year is gonna be a great one for us. I pray that everyone is doing good.. Take care!
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