Again to summarize, without going into too much detail, this is where things stand today. None of the three options that we were considering for my eye were viable. I felt like a sitting duck and at this point I was only seeing shadows or complete whiteness. It was recommended that I have surgery and therefore underwent a vitrectomy, where two incisions are made to open the eye to clean out the gel-like fluid, but in my case it was to clean out the blood. The doctor also applied a very high-level laser to the two retinal lesions to hopefully stop them from growing and bleeding. The hope was that after my eye heals, the pressure would go down and the fluid that had accumulated near the optic nerve would be lowered, decreasing the risk of a detached retina.
I had the surgery on Oct. 9, was able to see shadows on the 10th, and since then, other than an occasional shadow here and there, have experienced complete blindness (darkness or whiteness). It has been a very scary time, especially as the days go on and the vision doesn't improve. But I guess I'm learning to adapt to it, as I guess anyone else would when you have to.
Over the past 4-5 days I've noticed an increased pain behind that eye as well as swelling in the eyelid. I went to the eye doctor today. He checked the pressure within the eye, which is normally within the normal range, yet today it was extremely high and consistent with glaucoma-like readings. He gave me two new drops to take to decrease the pressure. If the pressure doesn't return to normal levels by early next week, he wants to try an Avastin injection into the eye. At the appointment today, he was also unable to see into my eye because it was filled with blood, so he did an ultrasound to confirm the findings. If we can't resolve this blood within the next week or so, he said he would go back in to surgically take the blood out.
For me, the blindness is very disorienting because I can't hear in my left ear so I can't follow sounds, and I've had many brain surgeries, and therefore I'm unsteady on my feet. And when you combine that with vision loss, it's simply not a good picture. But I'm very optimistic that I'll see again now that I know what the problem is. If the blood goes away, I know I'll be able to at least see shadows. Even if I can only see shadows, at least I'll be able to walk around things.
Along with my eye pressure being high, I've also been running extremely high blood pressures, which I feel is compounding the bleeding issue. I'm going to see Dr. Havey, my internist, on Monday to start on another blood pressure medication. (I already take three.)
I spoke with my neurosurgeon today, Dr. Bendok at Northwestern, regarding all my brain and spine scans. He said everything for the most part was unchanged, yet two areas were of somewhat concern. One is in the balance center of the ear, where there was a new build-up of protein-like cells, which I'm worried could mean the start of a hearing loss or another tumor in my right ear. I cannot be like Helen Keller so this cannot happen. So I'm hoping to hear from my ENT that it's nothing to worry about.
The other was an area in my lumbar spine (lower back) that has changed and would cause a walking imbalance and incontinence, and he would like me to see a specialist to make sure that the issues I'm having in those areas are not caused from this tumor. I have noticed my balance is off. After my brain surgeries and not seeing, of course my balance is off.
On a new forefront and brighter note, my neighbor Suzanne and I attended a VHL conference two weeks ago. There were five families present other than myself, plus a geneticist, kidney surgeon, and the leader from the East coast that runs the VHL Alliance. It was very enlightening as they have recently opened a VHL clinical care center, which is now the fourth in the country. How lucky am I that it is here in the University of Chicago.
Basically, they have eight different specialties to make sure that no areas are overlooked, including a geneticist. I plan to make an appointment to see all the physicians over a two-day span at the beginning of November. They mentioned that you can use them as a primary or just as a second opinion. Now that I know Tyler has VHL, I need to have Alyssa checked through DNA analysis, which the geneticist can arrange. It should be interesting to see their opinions compared to that of the general doctors I have been dealing with.
Since the start of my vision loss over a month ago, I have contacted the State Department of Rehab and the Lighthouse for the Blind. I have yet to see a body and I've only received calls back twice. It's very discouraging to me that somebody with a recent diagnosis of blindness can go this long with nobody following up on you. I am a very fortunate person that I have all the support of my friends and family that I do, because in general people might not have this support and might have given up by now. Blindness is like nothing else - it's the worst thing I've experienced in my life. What do all these people do out there? Our State runs on deadlines, the first of which they've already missed. They have 60 days to put a plan into action but they have not even come up with the plan yet. The State is very poor and slow, and they don't have enough accountability.
On an lighter note, I just returned from a well-needed vacation to Steamboat Springs and Golden, CO. The first half of the trip was spent with five friends from high school who all celebrated our 50th (or did I mean 30th?) birthdays. The accommodations were lovely in our five-story mountainside town home with mountain views and a Jacuzzi to boot. We went hiking, the girls all went horseback riding, and we even soaked in the natural hot springs and had a massage. We basically ate, drank, and reconnected. I can hardly wait to see the pictures when I can see again - hopefully soon.
We then went down the mountain to see my brother Jeff, sister-in-law Cindy, and their kids Anthony, Emma, and McKenna. Alyssa came along and stayed in Golden with them while the girls went our way to Steamboat. In Golden we again went hiking and we also went to Pearl Street in Boulder, which has a lot of shops, restaurants and street performers. We also celebrated Alyssa's 10th birthday there on Oct. 24. It was good to visit and catch up. Again, I can hardly wait to see the pictures of where I've been. A big thank you to everyone: Sue, Diana, Sheila, Sheila, and the Kolinski family, for making this all possible. And another big thank you to Sheila and her mother for splurging once again. I think Ruby wanted a fourth daughter.
Tyler, since the last post, had a full week of tutoring, and then returned to school about 10 days ago. He goes in early or stays late to continue to catch up on his work. He missed a total of 9 days prior to surgery and 18 days after, so he had a lot of making up to do. So far so good. His energy is coming back slowly, his appetite is improving, and his pain has nearly subsided. It's so nice to have my Tyler back again. He still suffers no neurological deficits. We see the doctor for a follow-up in a week because he is still restricted to walking only, and has been unable to lift over 5 lbs or drive a car. Other than his short hair and incision, you would almost forget he had surgery. We still need to continue to check the other areas of his spine and his eye to look for further signs of VHL, yet his ears and abdomen appear to be okay. Now that his energy level is improving, we plan to continue his college search.
Steve has never been busier. Between taking care of Tyler, his newly blinded wife, and schlepping Alyssa around here and there, he has had very little time for himself. Work has been crazy and busy, which is a good thing, but he suffers a tremendous amount of stress. Everyone in this family handles stress differently and we are all looking for the perfect outlet. Poor Alyssa just goes with the flow of life, but she's very busy with her girl scouts, soccer, choir, and jazz and tap. She needed the Colorado break since she's been under stress, too. It was a well-needed vacation for her.
Alyssa's teacher Sherrie ("Urbie") and Suzanne started up a meal train earlier this month, which has relieved a tremendous strain from Steve and has provided healthy, delicious meals for our family. It even has my kids trying foods they never would have tried, so they are developing new tastes along the way. It has been very appreciated and helpful. It's three days per week, and the leftovers feed us most of the other days.
Does anybody local know a good cleaning lady or someone good with organizational skills? If so, please email me.
Wishing you all a spooky, spectacular Halloween before the holiday rush begins. I will keep you posted on my vision and upcoming doctor visits as per usual.
