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Jeanne’s Arterio Venus Malformation

My name is Jeanne. I live in Youngstown, Ohio with my husband Del and two daughters, Jennifer and Allison. I also have two cats named Edward and Omar. I am a docent (tour guide) at the Butler Institute of American Art and also do costuming and acting in a community theatre group called the Victorian Players.

Spinal AVM at the C3 to C5 Level
I have been surfing for info on spinal AVMs, as I just found out 4 wks ago that I have one at the C3 to C5 level. Most of what I have found pertains to AVMs in the brain, so I was interested in sharing my experience.

I am a 54 year old married woman in Youngstown, OH. About a year ago, people started asking me why I was limping – which shocked me at first because I wasn’t aware I was. My left leg seemed to be dragging some – I would catch it with my shoe going up steps, loosing balance easily. Also, my arms were starting to give me trouble – left arm gets REALLY cold and achy and right arm has a constant hand tremor (it’s not too bad, but it never goes away). I secretly feared I was getting multiple sclerosis, but was afraid to say it out loud. Anyway, I started getting pain in my left hip, so I felt it was time to see my family doctor. He ordered an xray of my hip which came back negative, but because of my arm problems he ordered an MRI of my neck. I was shocked when he told me the results. He says he has never had a patient with a spinal AVM (several with brain AVMS). He sent me to a neurosurgeon for a more detailed MRI of my neck and spine. He has told me I cannot be treated locally, and if I can be helped (there is some involvement with the spinal cord) I have to be treated at the Cleveland Clinic in Cleveland, OH. I am now in the process of waiting for the clinic neurosurgeon to receive and read my MRI films and get back to me.

Needless to say, my world has been turned upside down over this. I am an active person, and I have been told to not do anything too physical (so not to raise my blood pressure) or heavy lifting. My neck is always a bit stiff and sore (has been for years-which I attributed to being hit from behind in 2 car accidents resulting in whiplash). I have a lot of back pain, but I also have some arthritis and disk bulging, which I control with painkillers containing aspirin (which now I shouldn’t take) and keeping the muscles strong by doing dance aerobics (3 times a week for the last 15 years), but which I am now told not to do (I have not been able to quit aerobics, but I am now doing very low impact and not raising or swinging my arms above my shoulders to keep my heart rate down – but it seems to be getting harder as my left leg is getting weaker when I start to get tired). I don’t know what to do, and I seem to be having trouble getting info from the local neurosurgeon. I guess I’ll have to wait for a while until I see the specialist in Cleveland.

I have had some symptoms that I have read that others with AVMs have over the years-like the severe chest pain that comes on suddenly. I thought at first I was having a heart attack, but if I keep very still and do slow breathing, it eases up. Thankfully, I don’t have this often, but it has happened several times over the last couple years. Also, I get a shooting pain down my spine to my toes and back if I look down quickly – it feels like an electric shock. These are probably related to my AVM and I didn’t know what was causing them. Also some numbness in the bottom part of my legs (shin area mostly), but since all these things would go away after awhile, I didn’t have them medically checked out. I have a definite limp all the time now in my left leg and was told that this is common for an AVM.

I was wondering if anyone reading this knows of anyone being treated at the Cleveland Clinic? Once your AVM has been completely removed, do you have to worry about it happening again somewhere else on your spine (kind of like varicose veins-you have them eliminated only to pop up somewhere else on your leg a year later!)? I hope someone will answer me, as I am very nervous about this.

Update: July 27, 2003

Much has happened to me since my original posting. I went to Cleveland Clinic and had a CT angiogram, then a regular angiogram the next week. It confirmed that I have a true juvenile AVM located entirely within my spinal cord. The clinic’s advice was to do nothing about it. They said that embolization was out as the AVM is feeding other parts of my spinal cord that could be affected if the blood supply changes, surgery was absolutely out of the question as they cannot cut the spinal cord to get to the AVM and in addition, mine is located toward the front of my neck instead of the back, which would make the surgery even more difficult. Radiation was also out as they said any gamma knife treatment would radiate the AVM, but would also damage some of the surrounding cells of my spinal cord, causing me additional neurological problems. I was told to play the odds, as I have lived over 50 years without a bleed, and I might never have another. They said to go home and try to forget about it.

I cannot forget about it, and my symptoms seem to be getting worse. Some family members have told me that it’s a mental thing. Now that I know what is wrong with me, I suddenly have gotten worse. That’s not true though. I have lived with pain for many years now from a few bad back discs, and have experienced several times the pain of kidney stones, and have gone through natural childbirth. Believe me, I know what pain feels like!!

Thanks to this webpage, I located a woman (Valorie) who has the same type of AVM I have and she has helped me a lot. She told me she had been treated by the Cyberknife and it is working for her. I then met another woman with the same thing (Thaye) who has also undergone the Cyberknife treatment, so I began to hope that maybe something could be done for me. Valorie has helped me get in contact with Dr. John Adler, the creator of the Cyberknife. I mailed all my test films to him, and he told me that he thought he could help me. He said that of course there are no guarantees on surgery, but there has been only one case with bad results in all the cases they have done (regarding damaging the spinal cord with radiation) and that case had extenuating circumstances that do not apply to me.

After careful consideration and many hours of soul searching, I have decided to go ahead with the Cyberknife treatment. My husband and I will be flying out to Palo Alto California on August 11. On Tuesday, August 12, I will meet Dr. Adler at Stanford University Hospital and start all the tests and preparation for two Cyberknife treatments on Thursday and Friday. I still have apprehensions that I may end up worse off due to radiation damage of the cord cells next to the AVM, but Dr. Adler has carefully explained to me that the risk is small – smaller than the risk of doing nothing. He feels I am having something like a "slow stroke" in that the AVM is slowly but surely causing me damage and in the years to come, I will have significant damage if left untreated. I feel I have to take action, and so I am placing my trust in Dr. Adler to do what is best for me.

Update: September 12, 2003

My husband and I made the trip to Stanford Hospital to see Dr. Adler on Tuesday, August 12. I was impressed by how nice and straightforward he was and I felt confident to proceed with the Cyberknife treatment. That same day I had my face mask molded, blood drawn, and then a CAT scan and MRI. After that, I was free to do some sight-seeing until my treatment times on Thursday, August 14 and Friday, August 15. Everything went so smoothly that it was hard to believe I was being treated for a rare and potentially devastating medical condition.
I also have to give Valorie DeGrendele a lot of credit for making my stay in California pleasant and pretty much stress-free. As Valorie and I share almost exactly the same type of AVM, she offered to assist me and did so in so many ways that I will forever be indebted to her. She is a great person and we have developed a bond of friendship that will last for a long time! I feel like I have a new sister now, and I’m sure we will continue to keep each other updated on our life experiences through the years to come.
When I returned to Ohio, I felt very tired and the back of my neck burned (like a new sunburn) off and on for a week or so. I also felt a little nauseous for a few days, but it may have been attributed more to jet lag and the emotions of the trip than to the treatment. Anyway, after a few days I felt fine. I am taking Neurontin three times a day and this seems to be helping my leg and hip pain. I have Percocet that I take if I have been doing a lot of physical work, so I am doing alright.
I have gone back to my normal life routine. I was at the Butler American Art Museum for a meeting this week, and now have to review the paintings and new exhibits so that I can start doing tours again. I also started back to my aerobics class. I have attended three sessions so far this week, and I must say I am stiff and my balance isn’t perfect, but I didn’t embarrass myself! I’m taking it easy. The aerobics part isn’t too bad, but the floorwork is a killer! That’s where I really notice my leg deficit. When my legs get tired they don’t want to move, and I have trouble with legwork and stretching. I’m sure I will improve as I get back into it more, I’m just happy to be back and ABLE to attend classes!
I have not felt any different physically yet from the Cyberknife treatment, but mentally is another story. I feel like a hundred pound weight has been lifted from my shoulders. After I was diagnosed, I thought about my AVM everyday and worried that I might have a bad bleed. I couldn’t imagine living an indefinite future like this, so taking action and completing the treatment has given me a new outlook on life. I now find that I don’t think about it for days at a time, and when someone new asks me about how I’m feeling, I have to sometimes actually stop and think why are they asking me this question? I know all of you out there reading this know what I mean. Sometimes it felt like I could think of nothing else. I’m confident the Cyberknife will make my AVM shrink and disappear, and I am so grateful to live in a country where this type of specialized treatment was available to help me. Thank you, Dr. Adler!


Discussion, comments, or questions:

Click here to view pictures of my CyberKnife treatment