I just want to encourage EVERYONE, no matter what diagnosis is to seek a second,third, fourth opinion. I have family history of VHL. From paternal grandfather, three of my father's siblings plus him, and now I am the lucky first of my generation.
I am an active 28 year old, who thought she had "a bad back", after a nasty fall nearly 6 years ago. My parents have always taken us for yearly eye exams, and all doctors are aware of my father's condition. Yet, I was blocked three different times by insurance for getting an MRI on my spine. In mid May, my husband and I found out we were pregnant. By Memorial day, my "bad back" had escalated into trouble walking, and inability to drive. I went to an orthopaedist, who diagnosed me with a probable hernia (I had taken a business trip, and carried my laptop around the warehouse,and yard for inventory). I was told to go on bedrest for a month, and wait and see.
At two months pregnant, I couldn't sit, wlaking was terribly painful and I was no longer able to lift legs to get into bed. I was propped on the couch in between doctor's appointments. By 14 weeks, I was cleared for an MRI (no contrast). I hadn't made it home from the imaging center when my doctor called. She had already scheduled me in to see a neurosurgeon at her hospital. Several lesions were found on my spine, the two largest were 4cm (with an accompanying cyst) and 6 cm respectively. I called my parents, and they contacted Dr. Wendy Chung for advice. She gave us the name of another surgeon at NY Pres. I made an appointment, and had MRI's sent to each doctor.
The first doctor (recommended by my OB) was reluctant to even talk about surgery without getting MRI's with contrast. When I told him that I was uncomfortable with what that meant for the pregnancy (we had found out we were having twins) He advised that he would suggest termination. In fact he said he didn't think it was even possible to consider carrying my babies to term. I thanked him for his opinion, and said these words, I don't exactly know where they came from, but I hank God they were there....
"Doctor, thank you sincerely for your time and your professional opinion. However, what you have just said to me leaves me on a path where there is no hope. I am not one to accept this. I must believe that there is hope. Thank you again for your time." I walked out of his office.
The appointment with the neurosurgeon recommended to me by Dr. Chung was scheduled for three days later. I can guarantee you that although I had not slept in three weeks, I got not one minute of rest in those days.
The appointment with the second doctor came. After looking at the MRI's and evaluating me, he scheduled a laminectomy and disk decompression for the following week. When I asked if he needed more through MRI's he said, "we'll do the brain, abdomen, and cervical spine, but without contrast." I asked if this would pose a problem. He said, "it's the difference between driving somewhere with a map, and driving with a GPS. I know the way, and I have a good map. I may not et all of the lesions though." Plus, he had done a similar surgery on a pregnant woman two years before. HOPE RESTORED.
The surgery went very well, although it took 5 hours longer than expected. My recovery was slow, compounded by a growing belly but I went back to work 6 weeks later, and delivered my babies via c-section right before Christmas.
A recent MRI shows new lesions which will be removed next month, but I know what to expect, and I have every confidence in my surgeon. The hardest part will be the week in the hospital away from my 3 month olds. But, I will have even more reason to push hard in my physical/occupational therapy.
Please, please use me as an example for second opinions and going for those yearly MRI's.
I wish all good luck to all and a cure for this in our time, and before my children need one!
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