Here is my story that went in my LOCAL HOME TOWN NEWSPAPER (TEXAS)
Thursday April 17, 2008
Tara Mund Stafford was going about her normal routine, talking to her boyfriend, Arch, via her computer at very early hours of the morning because he was in Israel training for his job. Tara’s kids, Maeghan and Caleb were sleeping, cozy in their beds. She told Arch she was going to go back to bed for a little while before she needed to get the kids up and ready for school and get herself ready for work. She never thought anything different, let alone life altering, would occur that September 7, 2007. But that very morning, it did. At about 5 a.m. Tara woke up with an incredible headache and couldn’t feel or move the right side of her body. She says this is where she can’t recall things too clearly, but she found out later that she called her mother, Betty, who lives a 1/2 mile away. Then without realizing she already telephoned her mom, Tara shouts for her daughter, Maeghan who is 12 years-old, and told her that she couldn’t feel or move her right arm or leg and to call her Granny to come quick. Betty who was already on the way, called 911, as well as Tara’s family doctor, Dr Matt Windrow and he said to get her to the hospital right away. Since Arch was out of the country at the time, Tara kept asking Betty to get in touch with him, but she had no way to contact him.
After arriving at Medina Community Hospital doctors performed a CT Scan and found a bleed on her brain. They then rushed her by ambulance (Airlife could not fly due to fog) to Methodist Hospital in San Antonio where Dr Windrow had already contacted them for her admittance to the Neuro ICU. Arch was trying to reach Tara at home and then called her on her cell phone. Maeghan answered and explained what was going on. Luckily, he was able to get a flight out of Israel later that day and he arrived early the next morning. Her brother Chad and wife Beth arrived within hours from Chicago. Tara’s family said that she complained of severe pain in her head but luckily remembers little for almost the first week.
Because the doctors were uncertain of what caused the pain they were reluctant to give Tara pain killers for several hours. Finally, they were able to give her Morphine and she gained a bit of relief from the pain. Dr. Frank Fichtel, a neurosurgeon, was requested by Dr Windrow to see Tara. An MRI was ordered shortly after she arrived at the hospital. Unfortunately, the results were inconclusive and they
scheduled another MRI with the dye to better determine what had happened. Fortunately for Tara her vital signs were stable and had been ever since EMS had arrived for her. The next morning, the medical team decided she needed another MRI and on Saturday evening they finally had a diagnosis. The waiting was horrible for the family as they had no idea what was wrong. That evening Dr. Fichtel explained to the family that Tara had an Arterio-Venous Malformation in the top part of her brain.
Arteriovenous malformations are masses of abnormal blood vessels which grow in the brain. They consist of a blood vessel “nidus” (nest) through which arteries connect directly to veins, instead of through the elaborate collection of very small vessels called capillaries. Some people are born with the nidus, but as the years go by, it tends to enlarge as the great pressure of the arterial vessels can not be handled by the veins that drain out of it. This causes a large collection of worm-like vessels to develop (malform) into a mass capable of bleeding at some future time. These malformations are most likely to bleed between the ages of 10 – 55; after 55, the chances of bleeding diminishes rapidly. Before 55, the likelihood of hemorrhaging is betweeen 3 and 4% per year (with a death incidence of about 1%). Once an AVM patient has hemorrhaged, the risk of having another one might approach 20% during the first year, and gradually lessen to about 3 – 4% over the next few years.
AVM s can occur in any area of the brain, and may be either small or large. When they hemorrhage, they usually do so with a limited amount of blood, unlike the hypertensive hemorrhages of other stroke patients. Loss of neurologic function depends on both the location of the AVM and the amount of bleeding. Many patients have very small hemorrhages, often multiple. They may display convulsions before even knowing about the presence of an AVM. Some patients suffer with headaches, often unrelated to the AVM which are usually found with a CT scan or brain MRI. In rare instances, children are born with large AVM’s and are found to have heart failure because the malformation makes the heart work beyond its capacity. These lesions are surrounded by a very discrete layer of abnormal, nonfunctioning brain tissue, thus allowing their removal with relative safety to the surrounding brain. This factor is of the utmost importance to the brain surgeon, who can take advantage of this natural separation between normal brain tissue and the abnormal vascular malformation.
Larger malformations may be made more surgically manageable with a technique called embolization. With this procedure an angiogram becomes a therapeutic tool. The interventional angiographer is capable of filling the malformation with agents which help decrease the blood supply to the malformation (coils, glues, plastic spheres, balloons, etc). This makes surgery easier in some cases. The technique has been used as the primary treatment as well, and has apparently been successful in some cases. Perhaps surgery is still the best way to go if the decision has been made to do something to eliminate the AVM for good. Surgery cures these lesions by totally removing them, thus disallowing them from ever recurring again. The doctors told Tara’s family that it had bled out and that it was considered a small amount. Apparently it had also stopped bleeding. An angiogram was scheduled for Monday to ensure that the bleeding had indeed stopped and so that the doctors could get a better look at the damage. He explained that over the next week they would monitor her in the neuro intensive care unit and then if Tara remained stable they would move her to a local rehab facility the following week. They also told her family that she would be having brain surgery with in the next two to four months. It was the best choice to make things better.
The Dr said that the brain heals slowly ant that was a critical point in waiting for surgery.
The first thing that Tara remembers is on Sunday morning. “My dad, Willie, was walking in the room and I remember him looking at me and I thinking that something was very wrong with me as dad does not do hospitals. He had been there since it all happened except to take my kids home on Friday night, but that is the first memory that I have.” She said with tears in her eyes. Her mom and Chad spent most of the night at the hospital by Tara’s side. On Tuesday, physical therapy began and Tara says it was extremely difficult and painful. On Wednesday, they moved her to a regular room. This was also Maeghan’s birthday. Unfortunately, she had to spend it at the hospital, but was a very good sport about it. Then, her friends
threw her a surprise party on Friday and it really cheered her up. Tara was moved to Warm Springs Rehabilitation Center on that Friday as well. There she would began therapy almost immediately. On Sunday, Arch proposed to Tara. She very happily agreed. Due to time issues with his work, he had to leave the following week for London and then was scheduled to return to Israel since Tara was in stable condition.
Thankfully, he was only in London for about 10 days, and then his job allowed him to go home and he was able to be with Tara.
She was in Warm Springs for several weeks when what they thought was a blood clot developed in her shoulder. As a precaution a filter was implanted in the vena cava below her heart. A ramp had to be built at the house for wheelchair access. Her right arm and leg were non functional and she had to have total help getting in and out of bed, wheelchair and bathroom facilities. Someone had to be beside her full time. She had to learn to eat with her left hand.
She would become exhausted over little activity or company. On October 5 she was sent home but within 48 hours of being home she developed a blood clot in her leg. The pain was terrible and Tara was forced to spend another 11 days in the hospital with doctors trying to treat the blood clot. Because of the blood clots forming and concerns over more developing, Tara and her family met with her neurosurgeon in mid October to determine when they could do surgery. The date was set for November 6. Tara was very scared and nervous over the next couple of weeks. She was grateful to have her family and her new fiance by her side though.
On the morning of the surgery they performed another angiogram to attempt to cauterize the area to prevent more bleeding during the surgery. Unfortunately, they were not able to do this because of the close proximity of the affected area to the good blood vessels. The surgery went ahead as scheduled taking a little less than the 4 anticipated hours. Many people, friends, family and strangers alike, sent their prayers Tara’s way. The brain surgery went perfectly. She had been told that when she came out of surgery she would probably have some residual swelling that might cause her to lose some of the abilities she had gained over the past two months in rehab, but thankfully, within 24 hours Tara’s feeling and movement was actually better than before the surgery. She was in ICU for four days before they moved her back to Warm Springs where she stayed until just before Thanksgiving. When she left rehab she was able to walk short distances with only her AFO (ankle-foot-orthosis which is a hard plastic that keeps the ankle and foot inline for proper walking) and longer distances with her walker. She has continued therapy ever since and is getting stronger every day. “I am now walking much better and my movement in my arm is significantly better. My foot is still not back to normal with feeling or movement, but it is improving. This is thought to have been leftover complications from the blood clot pressing on that portion of my brain. I am very thankful to be alive and able to enjoy life to the fullest.” Tara said.
On December 23, Tara and Arch were married by Cousin Jon Bielfeldt, a Lutheran Minister in a small ceremony in their home. She was able to walk with the aid of Caleb who gave her away. Maeghan stood beside her Mother as her Maid of Honor. Arch’s best man was Ken Thompson, a friend from Del Rio.
Tara was very active playing co-ed softball, coaching a Little League team at one point, maintaining her yard and working full time as a Escrow Officer Assistant, being very self sufficient. Tara says that her family feels blessed for her recovery and the fact that Arch was by her side supporting them all. They feel that his devotion and care are largely contributed to her recovery and zest for life, and among the fact that she had 2 children that she needed to raise. She is determined to get back to herself and enjoy the rest of her life with her family.
Last summer Arch and Tara had talked about the fact that she never used her insurance at work and that she had thought about cancelling it. But, he told her that 10 years ago he came down with a very rare form of pneumonia and was in a coma for almost six weeks. When he woke up he had no movement below his neck and was on a ventilator. He went through therapy and worked hard and is now living a normal life with full feeling and movement. He reminded her that you never know when something might happen to you or your family. His past experience really helped her in understanding how she was feeling and the fact that he stayed with her every moment he was allowed to, will never be forgotten. She says she is still paralyzed in her toes. She can feel to an extent but still has no movement on her own yet. She wears her AFO daily to be able to get around. Her hamstring in her right leg is also very weak and it makes for a hard time to walk but she manages she says.
Tara’s husband, Arch, is currently deployed as a contractor with the British Army in Afghanistan flying large unmanned spy planes in support of coalition forces fighting the Taliban. Tara is currently a stay-at-home mom.
UPDATE: We now live in Maryland (3 years now) and I have found an AWESOME Neurologist that has been helping me with my leg issue and my brain issue. I have done Neuro Feedback (Brain Training) for the last 3 years and I now have fixed the spot in my brain where my AVM was. I don’t have headaches like I used to and I don’t forget as much as I used to. I still have to wear my AFO to walk but I do get Botox in my leg every 3 months and have been for the last 3 1/2 years. It seems to help me with my walking. I don’t fall as much as I used to. I still have weakness in my right leg due to having a week hamstring but am going to PT twice a week to help with the tightness in my ankle/Achilles Tendon. I am determined to get this thing loosened up without having to do the surgery. My kids are now 17 and 13 and I am thankful that I have gotten to see them grow succeed. I am still a stay at home (work from home for a company in Texas) mom and am thankful that I get to see them off to school and am here when they get home. I have a very supportive family and i am so thankful for my husband who has stuck by my side for the last 6 years!!!!