In July, 1997, my husband, Greg was diagnosed with an aneurysm on his right vertebral artery. On July 21, exactly one month after we were married, he underwent surgery in Houston to have it clipped. We thought his lifelong battle with severe headaches was finally over.
Over the past two years, the headaches have, if anything, worsened. They now share their time with a persistent sound of blood rushing through vessels in the left ear, close to the surgery incision.
The neurologists in our area who are in our HMO plan kept treating the symptoms of Greg's headaches instead of searching for a cause. On February 11 of this year, a migraine began that would last for 14 days.
On day 14, Greg was diagnosed with at least two AVM's. This was just last Thursday. The films of his arteriogram and charts have been sent to Houston for a neurosurgeon's opinion on their severity. The radiologist here sounded confident that the AVM's could be taken care of, but he wanted us to have it done in a larger hospital with better facilities and experience.
Since that day, I have done extensive research on the internet, reading everything I can find on AVM's. I can't worry too much yet, because I don't know the size or exact location of Greg's AVM's. I do know that two shots of Demerol for the migraine did absolutely nothing. After the typical delays associated with HMO and its affiliated doctors, we finally arranged to have an arteriogram run on day 14 of the migraine. The radiologist, Dr. Anderson, was very professional and did an excellent job of explaining what he had found to us. We are waiting now to hear from Houston about what they recommend our next step should be.
I hope to be able to append this report with a positive ending soon.
Update 12 Apr 1999
As I write, Greg is at a doctor's appointment to find out about the pains in his left arm. While they have been present for several months, they have been constant for several days. The intensity varies, and he has an overall 'bad' feeling. I am very worried. The only information I can find about these symptoms involves strokes or potential strokes.
On Thursday, April 15, Greg will undergo an embolization procedure in Houston. As I understand it, not only will they 'glue' some of the vessels closed, but they will also reroute some. All the AVM's seem to be in arteries outside the brain, but they will perform another arteriogram before the procedure to be sure. It should take several hours. Please keep him in your thoughts and prayers.
Update 21 Apr 1999
Great news! The wiring procedures seems to be a success. On Thursday, April 15, Greg underwent 6 hours of surgery to close off his fistulae. Dr. Michael Mawad of Methodist Hospital in Houston called them (there were three) spontaneous fistulae because they seem to have formed since his last arteriogram in July of 1998! All the information I had found indicated that AVM's were congenital - present since birth.
The surgery lasted 6 hours. The procedure started with two incisions in Greg's thigh, and an arteriogram to verify the locations of the fistulae. They all emptied into the sigmoid sinus, within 2 - 3 centimeters of each other. Just above the fistulae, the left temporal lobe also emptied into the same vein. The surgeon had to be sure it still drained, while closing the fistulae. He used both platinum coils and glue (not FDA approved, but widely used).
The rushing sound is completely gone. The migraine type headaches have not come back since the surgery. Greg does have a 'burning' sensation in his head at the location of the surgery. One of the arteries they entered was less than a millimeter in diameter. I would think that manipulating an instrument through such a small, meandering vessel would have to disturb the surrounding areas, and thus perhaps cause the burning.
Greg returned to work on Tuesday (maybe a little too soon), and worked most of the day. He complains of a drained feeling, and of an inability to concentrate that comes and goes. On Wednesday morning, for the first time since the surgery, he felt almost normal. Within a few hours, he was tired again, but each day is such a major improvement over the previous that we can't help but rejoice. Thank you to all who offered their prayers these past few months.
Dr. Mawad will follow up with an angiogram in October of this year.
Update 2 Jun 1999
It's been nearly 7 weeks since Greg's wiring procedure, and I guess overall he's doing okay. The migraine-type headaches have returned, and he's had 14 days of headache scattered through these 7 weeks. The longest has been 4 days (now). He's only missed 4 days of work, so the headaches are usually bearable. His neurologist here in town doesn't seem overly concerned about the headaches, but he didn't get excited about the AVM either. Greg currently takes Imitrex nasal inhalants for the headaches, but they usually don't work. Any suggestions about medication would be appreciated.
A side note that some people who have had the wiring procedure done might not have considered: The procedure involves x-rays - in Greg's case, 6 hours of radiation. His hair began to fall out after about 2 weeks! Until the surgeon's nurse explained the radiation, we didn't know what to think. Curiously, it's only his colored hair that came out. The gray stayed. Bummer. It's now beginning to grow back.
Update 14 Jun 2000
I wrote in April of last year that Greg had pains in his left arm. They never stopped after the AVM surgery, and we have been trying to find the cause since then. Yesterday, Greg's doctor informed him that a blood test called an ANA (antinuclear antibody) test came back positive. This, along with a constant overall tiredness, low level fever, and occasional odd behavior - he acts drugged - means the possibility of Lupus. My heart nearly stopped when Greg told me. He is scheduled to see a rheumatologist next Tuesday for more tests. This man has had enough suffering to last three lifetimes. Please keep him in your thoughts and prayers.
Update: 5 Aug 2002
Greg does not have lupus, but the pain on his left side has spread to both limbs. He goes to a pain management doctor, and takes a handful of different types of pain relievers and other medication to try to alieviate the pain. At best, it takes the edge off the pain. The migraines also continue, and he uses Imitrex injections to ease them.
On a bright note, the imitrex works much better now than it did, and the migraines only come about 1 time every two weeks. He's coping, but like many other stories here, the ending isn't always happy.
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