I really don't know where to begin, but oh well, here goes. In the summer of 1994 my husband, Tim came home from a trip on his dad's commercial shrimp boat. At the time his right eye appeared a little swollen and blood shot. This did not alarm me at first, especially since he had been up 24 hours straight. However as the days went on the eye didn't get any better and started to burn.
I made him an appointment with his eye doctor to have it checked out. He treated him for pink eye and sent him home. After weeks of treatments and return visits, he was released with the eye in the same shape that it had been in. Now being the stubborn man that he is, he refused to get a second opinion. Now in February of 1995, his parents and I decided that his eye appeared to be getting worse, so I made him an appointment with a second eye doctor. His appointment was scheduled for the end of March. On March 9, I decided to tell him he had an appointment with her. That was when he decided to tell us how painful it was becoming. I called the doctor back and she agreed to see him March 10, at 4:30.
March 10, 1995, the beginning of our nightmare. Dr. Carol Johnston, a wonderful doctor examined Tim and almost immediately knew there was an AVM. It had pushed his eye out approximately 1/4 inch. She scheduled his MRI for the following Friday. Of course there was nobody at the hospital to read the MRI that afternoon. The weekend seem like an eternity. That Monday she called me at work. She confirmed that Tim did have an AVM. She told me that she would be sending him to Duke Medical Center, but that we could be facing a wait of a couple of weeks.
As I pulled in the driveway to talk to Tim that afternoon, Dr. Johnston was on the phone tell him he had an appointment with the Chief of Neurosurgery at Duke in a matter of days. We knew then that it was serious, but I didn't realize how serious until I picked up his films to take to Duke. I almost fainted when I pull them from the envelope and seen how large his AVM was. It was and is horrifying to know that its there.
When we reached Duke, Tim was taken in and examined. The chief neurosurgeon decided that his AVM was too larger for surgery and that it was an even bigger risk since the largest part of the AVM lies on his brainstem. They scheduled an angiogram for the following day. After the angiogram, we were told that all the forms of radiosurgery that Duke had to offer was out. They then in turn sent Tim's films to California and Boston for review and possible Proton radiation to shrink it.
Then the guessing game started, as you all know, there is still so little known about these things. One doctor told us Tim had maybe 10 years before he would experience a major bleed. Another said 5 years and then one said 2 years. You know the worst always rings in your head over and over again. Tim was denied for Proton radiation treatment because his odds didn't look good. Tim carried on and rebelled against all that the doctors said not to do(which was everything). He had no major complications other than the swelling of his right eye, mood swings and severe headaches. Then again its like he said, when you've lived with headaches all of your life, how do you know any different.
In February of 1997, Tim experienced a seizure while trying to play soccer. I thank God for that now because it caused no severe damage, but it scared him enough that he sought God's salvation. You know during these times when we feel so hopeless, you have to find the good in it all and God is all that has kept us going and sane through all of this. Then in July of 1998, Tim experienced a major seizure where he stopped breathing for a few minutes, but thank God he came through it o.k. An EEG was performed to check for brain damage and an MRI was done. It showed no leaks and no damage.
Well this is March 29, 1999 and he is still standing strong through the grace and mercy of God, but he's starting to bleed. Its not an inward bleed but its coming out through his nose and mouth. Tim's AVM is very unique as they all are, but his has a vein that runs from the internal AVM to an external AVM at his temple and back into his sinus cavity. It is almost as if it is releasing itself. Our problem is his AVM has become so large that it is causing weak veins to burst behind his eye. We've been back to Duke and they say that there is nothing that they can do.
If there is anyone out there who has any suggestions we would love to hear them.
Update 28 Apr 1999
On March 30, Tim's family physician put him on Toprol 50mg one time a day to lower his blood pressure(even though it was only 120/70) and slow down the bleeding from his nose. This seemed to be working. He would still bleed but when he did it wasn't as heavy and didn't last as long.
We were so happy with the replies we received from everyone in the group about different doctors who may be able to help Tim and of course the prayers meant so much. We immediately started contacting people. Tim was able to get in touch with a radiologist in Dallas, Texas. She told him about a procedure that was performed there called Transcatherization to embolize his AVM. This procedure is done by Dr. Phillip Purdy. I was to over night Tim's films on 4/5/99(the day after Easter).
On Easter Sunday Tim experienced another large bleed. This one happened during church. Even though he tried to be discreet about it, everyone knew what was happening. I can't begin to tell you how hard everyone prayed that night and thank God the bleeding stopped.
On 4/5/99, as I was preparing to go to the postoffice to mail Tim's films, he received a phone call from Duke. It was a doctor Tim has never seen before, nor even spoken to. His name is Dr. Allan Friedman and he is the new chief of Nuerosurgery at Duke. He wanted Tim to come and see him on 4/7/99. Tim agreed and in the mean time he had another appointment with his family physician(Dr. Donald Pocock) on 4/6/99. He increased Tim's Toprol to 100 mg. On 4/7/99, Tim saw Dr. Friedman at Duke and he referred Tim to Dr. Tony Smith.
Dr. Smith, also at Duke talked to Tim about embolizing his AVM. We asked him about transcatherization and he said that's what he wanted to try. It was like God provided a place for us to have this done closer to home, especially since we were told there was nothing they could do only the month before. Tim also asked if he had heard of Dr. Purdy and found out that Dr Smith and Dr. Purdy trained together at UCLA.
Tim contiued to bleed for a couple of days, but the Toprol eventually stopped the bleeding. We were told that his AVM has become so large that it is blowing out the blood vessels behind his eye and in his sinus cavity. Dr. Smith scheduled Tim to check into the hospital on 4/19/99. His embolization started on 4/20/99. Dr. Smith is using N-butyl cyanoacryalate(super glue) to shut them off. He shut down the vessels that were bleeding first and shut down one large artery that was feeding the AVM.
On 4/21/99, Dr. Smith was able to go back in via the angiogram and shut down two more large arteries. The second day was harder for Tim to recover from. He stayed sick all day, but thank God it was all a success. Tim still has along way to go and is in alot of pain. I guess he bled so long he didn't feel any pressure associated with his AVM and now his head feels like it's bursting. Dr. Smith wants to go back in next month and do some more.
Tim's AVM is very large so we know there will be no over night treatment, but we thank God for the hope and all of you for your prayers. Tim will meet with the doctors soon to discuss his further treatment and we will keep in touch.
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