Thank God!


From:"Leslie Kinnee" lkinnee@banditchippers.com
Sent: July 25, 2003

I have been searching on the web for days for an on-line support group. Hopefully this site will prove to be what I've been looking for. I'm a 31 year old mother of 2 very small children. In March of this year I had a "spell" which lasted 10-12 minutes. This spell began as I picked up a towel off the bathroom floor. When I stood up I experienced blurred and hazy vision, saw black spots and white "stars". The episode ended, my vision cleared and a headache set in, along with slight nausea and diarrhea. I felt better, but not normal following the episode. The following week I had very bad headaches, dizziness and compromised vision (like I was looking through a dirty lens. Also, worsening sight in 1 eye).

I went to my Primary Doctor exactly a week after my episode, fearing high blood pressure. He ordered a CAT SCAN which showed an abnormality. He thought I'd had a stoke and rushed me by ambulance to a larger hospital. There I had an MRI which confirmed that I had a CAVERNOUS ANGIOMA located on my right side, close to the area which controls my vision.

A neurologist at the hospital referred me to a neurosurgeon. Through my own research I had learned that there were 3 ways to treat cavernous angiomas 1. surgery 2. wait 3. stereotactic radiation (which has never been proven to be affective). I was extremely surprised when surgeon #1 recommended the radiation and strongly advised against surgery stating that there would be definite sensory damage to my left hand, at the very least. I was overjoyed to think that I didn't need surgery. I then went to see the radiation/oncologist who would be performing the procedure who advised against the radiation, saying that it probably wouldn't work. She suggested a second opinion at either U of M (I live in Michigan) or Mayo Clinic.

I had to get special permission from my insurance to see a surgeon at U of M because they do not participate with my insurance. Surgeon #2 felt that it definitely needed to be removed and didn't think the surgery would be that difficult. He felt I'd have some temporary vision problems which he felt very strongly would go away within 2-3 months. He seemed very confident in his ability and in my outcome. I was all set to have him do the surgery, but in the end, my insurance wouldn't allow it. They wanted me to see another surgeon, in network.

So, I went and saw surgeon #3 last week who said that surgery would be messy. He actually used the term messy. He also threw me for a loop when he recommended that I leave it alone. He felt surgery would leave me with sensory problems in my left hand and possibly my left leg. He suggested an MRI in a year to see if it had grown. If it grows or bleeds again then he said we'd have to reconsider the possibility of surgery. He ordered an EEG to see if I need to be on seizure meds (I've had 2 seizures in my life that I now know are related to my cavernous angioma). But other than that, he told me to try to lead a normal life and to let him know if it bleeds again.

That's 3 different surgeons with 3 very different recommendations. It's very frustrating to say the least. Now I'd like to go to Mayo to get their opinion, but my insurance won't allow it. There must obviously be a lot of controversy surrounding cavernous angiomas given the 3 different opinions I've been given. What I've discovered in my own research is that there are very few things the experts know for sure when it comes to cavernous angiomas.

All summer I assumed I'd be having surgery sometime soon. I wasn't looking forward to it, but was going to be relieved when it was all over. I'd know what damage I had to deal with and I'd deal with it. But now I'm just kind of left in limbo. I was told to try to live a normal life. I feel like this THING is always lurking behind me. I'm constantly waiting for and wondering if it will bleed again.

The last 4 weeks I've been having a clicking noise in my left ear, accompanied by some pain and now it's muffled. My Primary doctor gave me a prescription for a sinus infection. I can't say it's much better, but it sounds like this problem might not be related to my cavernous angioma. However, the past few weeks I've also begun having dizzy spells again. And I'm very tired. Now I'm trying to find out if the dizziness is normal, if this is going to happen occasionally and if there is anything I can take for it. I'm a Public Relations Coordinator for a manufacturing company and my current condition is definitely hampering my ability to think clearly.

And then there's my kids. I've tried my best not to let my condition affect them, but when I don't feel good I can't be the mother I once was. Will I ever feel like my old self? I can't help but wonder what my future holds and how it will affect them. I could have a major bleed that could cause permanent damage or death. Or, I could have surgery (at least there would be some finality) that could leave me with horrible damage.

My husband has been great through all this, although I've accused him of not being very emotionally supportive. He's just a guy. He pretends, for my sake, that things don't bother him. That I can live with.

What I can't live with is the difference in opinions I've received. I can't help but wonder where the best place is to go when you have a cavernous angioma. If the best facility in the country told me to leave it alone, I'd do it. If they told me to have it removed, I'd do it. I just need to know. I need some closure. I want to get on with my life but can't in my current state. I know there must be others out there who are experiencing the same frustration as I am.

Leslie K. from Michigan