I have been reading all of the other narratives and thought we should add our own. We are Ralph and Pauline Brown and live about 100 miles west of Ottawa, Ont. Canada.
Ralph has had a lot of health problems, mainly deteriorating disc disease which has affected both lower and upper back. He also has a history of high blood pressure which is also very fluctuating at times. He often complained over the years of pain in the back of his neck and we always put it down to disc problems.
On July 20th Ralph was watching TV when the screen became distorted and he got a severe pain in the back of his head and back of neck. He lay down and proceeded to do his physio exercise for the neck but the pain got more intense. He vision was also getting worse. He was alone and as we live in the country he tried to use the phone and call for help but couldn't see the numbers. He then crossed the highway and got to the neighbors where they took him to our local hospital.
The on duty doctor in emergency was astute enough to realize that there was something going on in his head so called the Civic Hospital in Ottawa and had him transferred there by helicopter. There was a team of neurosurgeons waiting and were prepared to operate to relieve any pressure. A CT scan was done and the findings were that he had a bleed caused from an AVM, they figure the bleed lasted 3-5 seconds. The put him in intensive care on Demerol for pain and said they would have to wait until the swelling went down before they could operate. He was sent home on July 30th with Tylenol for pain.
By Saturday afternoon August, 1st, I took him to our local hospital as he couldn't stand the pain in his head. They gave him an injection of Demerol and Demerol pills and sent him home. Five thirty the next morning we were back at the hospital and they sent him back to Ottawa by ambulance.
Monday, August, 3rd, the neuro specialists at the Ottawa Civic put him on Dexatron to reduce the swelling on his brain. My daughter and I were with him on Monday evening when he took a seizure. They worked on him for an hour and after tests and ultra sound found that he was full of blood clots in both legs (the only explanation given was laying in bed for the two week formed the clots). some of the clots had let go and traveled up through the heart and into his lung. He suffered a mild heart attack and had a pulmonary embolism. He was taken to the Heart Unit and monitored.
They then decided to prevent this from happening again, inserted a vena cava filter through his jugular vein into the main vein leading to his heart and lungs. That specialist that performed the procedure told him if it was in for more than 3 days it would be there the rest of his life and they could not remove it. At that time he was intravenously put on heparin to dissolve the blood clots. By this time he was becoming very depressed as he had been through so much. He was retching almost constantly as he can't vomit because of a hiatus operation back in the 80's.
Saturday, August, 8th, he was still on heparin intravenously and was in the intensive care unit when he took a major seizure. More blood clots had released and plugged the filter causing them to back up into the abdomen and kidneys. He said he has never had a pain like that in his lower abdomen and hips. They called me and said they were afraid he was going into renal failure and the family should come. When we got there he was catheterized and the bag was half full of blood. He rallied again and was kept on heparin for the next 12 days. They told us he would be on blood thinners the rest of his life, even though the clots stopped forming, because of the filter it restricts the blood flow so the blood has to be kept thinner than normal. The doctors said he could come home when his INR level was between 2 and 3 (this is a reading for the thinness of the blood). He was released on August 23rd.
The neurosurgeons told him it would be at least six months before they would attempt an operation and then it may not be possible, being on Coumadin. His vision is so impaired that they claim with the trauma he went through he developed cataracts both eyes besides the other damage. His mind is fine though. He doesn't recognize people he has known all his life as everyone has changed. If his own brother comes into a crowded room he will recognize him but when he takes off his coat and the clothes change, he has a hard time to pick him out again. Naturally he has also lost his drivers license.
To date we are regulating his own Coumadin as we can't let it go we find below 2.3 or he starts feeling tough. He has another ultra sound in November and there are no new clots, so the Coumadin is working. He has to wait until February before he can get the cataracts removed as they won't touch him before six months due to his heart attack. We were to see a hematologist specialist and he feels that they could take him off Coumadin for 3 or 4 days while the neurosurgeon repairs the AVM, but the chances are great they said that the filter may plug but they feel they can work with that.
He suffers pains in the back of his neck yet, is tired, and sometimes has a weird taste. We are waiting on an MRI now to see where exactly the AVM is situated. If the neurosurgeon feels that it is operable without the chance of doing more damage, he will go ahead with it. If not he has a 3-5% chance of another brain bleed. We are so uncertain of what to do as he is mobile now and leads a near normal life except for the eye sight and tiredness. The doctor told him he had a real mess in his head when they did the cat scan. The AVM is located on the right side of the head nearer to the back. They think he may have been born with it.
We wonder if given time and IF it is cataracts as they say and not something else affected by the AVM and he has them operated on, if the AVM will diminish and he may get more sight back. We live day to day wondering if he will have another bleed.
Update 24 Mar 2000
Ralph suffered a bleed in July 1998 and at the time they were going to operate but he developed blood clots, one went into his lung. Consequently he is on coumadin for the rest of his life and he has a vena cava filter inserted in the large vein before his heart. His health is getting progressively worse, terrific roaring and ringing in his head, his eye sight, and we think he suffered a slight stroke two weeks ago. He is having an angiogram done at the General Hospital in Ottawa next Thursday and at that time they will insert a coil to close off the vein in his head feeding too much blood to the brain. Please keep him in your prayers and we will let you know how everything goes. Apparently it is a very dangerous procedure but they think operation is not possible.
Update 2 Apr 2000
Just to let everyone know the latest on Ralph. He had the angiogram done at the Ottawa General on March 30th and at that time tried to insert a coil to block the bleed. They injected the dye into the brain and the radiologist said they got 4 hours of pictures but just before they reached the area of the AVM the artery was twisted in an S shape so they had to abort the coiling procedure. We are to meet with the neuro surgeon again in a week or so to discuss the possibility of operation. Although the AVM is small it is deep and at the base of the brain.
Ralph and I were so uplifted by all the messages of prayer and concern from other AVM and aneurysm people and were so thankful to hear from so many great people. God works in many different ways and we know that prayers have brought us this far and has definitely kept us with a positive attitude. Thank you, everyone again and we will keep you posted.
Update 16 May 2000
Ralph had his surgery on April 19th to remove the AVM and the surgery team feel that they successfully removed the AVM. He was on the table for 5½ hours and has a very large incision on the back of his head.
He thinks his sight is a little better, still has the loud ringing in his ears, but the intense head ache in the back of his head seems to be gone. He is very tired but that is a minor thing after only 4 weeks. He walks on his walking machine every morning and again we walk the dog for a mile in the evening. He is to go back for a brain scan on May 29th. He was released from the hospital on the 6th day.
We thank God for his miraculous recovery. So many people prayed for a successful operation and our prayers were answered. He will be on coumadin because of deep vein thrombosis and the vena cava filter for the rest of his life but this we can handle. Please let everyone know, as the support group were wonderful with their letters of encouragement to Ralph and also their prayers. It was the support group, and his children, that gave him encouragement and hope for the past two years.
God bless you all.