BEB experience

Posted by Tracy Peters , Sep 16,2001,10:16   Archive
After my first posting yesterday, I got a lot of answers and questions.

It was May of 1999 that I realized I had a bigger problem than just needing a new glasses prescription or more sleep. I went first to an ophthalmologist who thought I had ptosis. He did schedule an MRI for me. It was then my insurance (an HMO, Beacon) stepped in and said they wouldn't pay for an MRI, that I had to go to an optometrist first. Since I was two steps ahead of that I went to the MRI anyway. I had had a possible aneurysm several years earlier so then went to the Neurosurgeon (Dr. Basil Yates) I used then. Dr. Yates sent me to a Neurologist (Dr. Noble David)at the University of Miami Medical Center. About this time my HMO caught up with me and said I could have an MRI but at the place of their choosing. Dr. David wasn't sure what I had but prescribed valium and sent me to Dr. Skiatowski who was a Neuro-Opthamologist at Bascom Palmer Eye Institute in Miami. The valium did help especially when I started getting all these medical bills that my HMO didn't want to pay. All this took several months during which my eyes were getting worse. I had my first botox treatment with Dr. Skiatowski in August 1999 at which time my eyes were almost always shut.

My first treatment was only about 50 units of botox and took about 3 weeks to have any effect. Even then I could only keep my eyes open a minute or two at a time. The next time I went, I saw Dr. Hilda Capo and got 100 units which I was told is the maximum dose. Again it was about 3 weeks before I could see any difference. Anyway the long and short of it is, it took over a year trying different doses and frequency of visits to fine tune things. I go now every 4 months and get 70 units of botox. I still see Dr. Capo but there is another doctor at Bascom Palmer who does the shots too, his name is Dr. Byron Lamm.

Continuing the insurance saga, the HMO finally did catch up with me and did reimburse me about 6 months later for the MRI, some of the Dr. visits and part of the others. The HMO went out of business. I really don't think I was the cause of that. My employer then got Foundation Health a PPO. They were actually worse than the HMO. I still had to self pay and hopefully get reimbursed. Foundation Health took about a year to pay me back saying that the botox injections were cosmetic and that wasn't covered. They've gone out of business too. I'm starting to feel guilty. My new insurance company Pacific Life is accepted by Bascom Palmer. I had my latest treatment in August and haven't heard anything from them yet.

Since I have been self pay for most of the time, everybody seems to get the full amount. The Dr. gets $175 per visit and the hospital gets the $1800 for the botox. I'm not sure what will happen now the insurance company is paying up front.

I stopped driving the end of May 1999. I've driven twice since then. I probably could drive all the time now but am afraid to. I would say that the first year was the worst. My eyes were closed more than they were open. About all I could do was listen. I found the wonders of books on tape. The botox helped but wasn't a miracle right away. As I said above it took a lot of fine tuning to get the dose etc right. I can sew and read and watch TV and am almost back to normal. I do have light sensitivity but good dark sunglasses help that.

I worked through all this. The people at work and my Supervisors were wonderful especially since I didn't feel like I was doing my job very well. I get rides to and from work from my co-workers and husband but am pretty much isolated and home bound the rest of the time. At one time I was advised by several friends to quit work and go on disability. I'm glad I stuck it out because work is a diversion and I'm not completely isolated. I was lucky and realize that a lot of people don't have the luxury of support at work.

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Re: BEB experience

Re : BEB experience --- Tracy Peters
Posted by Shirley-Arkansas-USA , Sep 16,2001,14:43 Top of Thread Archive
Thanks Tracy for sharing your BEB story with us. It is reinforcement to a lot of people out there that successful treatment does take time and sometimes changing doctors. You were able to keep your job and can once again do most of the things that you did before with limitations. With this disorder that is really the best that we can even hope for. It sounds like you have a good head on your shoulders and are doing the right things.
Let us know if we can help you in any way. You have helped many others already by just sharing your story.

Thank you,
Shirley in AR.

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Re: BEB experience

Re : BEB experience --- Tracy Peters
Posted by Sally - in - Idaho , Sep 16,2001,15:06 Top of Thread Archive
What an insurance nightmare you went through, Tracy! I'm happy that it all ended well for you, but there are so many people who just could not pay the costs up front and hope to be reimbursed. There has to be something done about the insurance/health care mess in this country.

Sally in North Idaho

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