Established April 15, 1995
University of West Georgia Disclaimer
Mr. and Mrs. Jim Craft Jr.
My name is Jim and I am 47 years old. I have been married since April 16, 1988 and we have no children. We are dog lovers and lost our dogs, a cocker spaniel and a beagle last year from natural causes. Two years ago, while at work I found a litter of kittens and we all took one home. The kitten grew up with two dogs and thinks he's a dog. I can take him walking on a leash. I enjoy swimming at the beach and body boarding at nags head, N.C. I like to play pool and going to concerts. My favorite musicians are the Eagles, John Prine, and Neil Young. I have been a supporter of ACC college Basketball especially the North Carolina Tar Heels. Now that UVA saved my life, I'm a supporter of the Virginia Cavaliers. My wife and I enjoyed our first NASCAR race in 1992 at Charlotte and since our first race we have been NASCAR fans. We have gone to many races at Talladega, Daytona, Richmond, Dover, Rockingham, Martinsville, Charlotte, and Darlington... It was a great time and we hope we can enjoy going again. We like roller coasters and amusement parks. I don't know if I can still ride them with the brain injury, I guess that's a question for the doctors. And the last thing is for all who read my story, remember that you can survive and live beyond an AVM. God bless and good wishes to you all. The accompanying photo is of my beautiful wife and I enjoying a Stroke Support Christmas Cruise in 2006.
10 March 2006 DATE
My story begins July 8 2004 when; while at work I had a grand mal seizure. I was standing holding a phone to my ear when they say my head twisted around and I went straight back and down. When I came to I had seven people on top of me. I fought till I went unconscious. I then awoke in the hospital with my wife by my side who told me, you have had a seizure. I was shocked since till then I was in good health.
The doctor then had me go for a ct scan where he found the AVM in the right temporal lobe of my brain. They scheduled me to see a neurologist on July12, 2004 and a neurosurgeon on Aug. 19, 2004. My wife and I went to the neurologist hoping to find out what an AVM was and how to treat it. The neurologist informed us that an AVM was a series of arteries, veins and the capillaries that join them together that was malformed when I was born. An Arteriovenous Malformation was introduced into my vocabulary. It would be a term I wouldn't soon forget or recover from. He then told us that there were basically two forms of treatment. #1 is to have it surgically removed, but that required massive cutting into the brain and the removal of the part of brain it occupied and that would lead to massive scarring; witch the brain doesn't like. #2 is to have radiation, which is the least evasive, but could take up to 2 years to shut down the AVM and until that happens; you are at risk of a bleed.
He asked me if I had noticed any strange feelings or happenings as of late. My reply was that I had been having anxiety attacks for a while. He asked me for how long had I been having them, how long did they last, and to explain the feelings. I replied that I had been having them for years, two maybe four, six I'd lost tract since I felt it was a common thing when you have a stressful job like mine could be. I told him that they would last up to 30 maybe 45 seconds, and felt like I was panicky and a little like déjà vu. You know that you had been here doing that same thing, talking to that same person before. Well I had been at the same job for twenty years and felt I most likely had been doing that same thing before so I just contributed it to anxiety attacks and went about like it wasn't a big deal. He explained that they were mini seizures. I'd been having mini seizures for years and passing them off as anxiety. The curse had been growing and I pretended like the feelings I was having were normal.
When we left his office, I don't think I really knew that this thing could kill me. I mean I felt fine except for the lump on the back of my head that I received from the concrete floor when I had my seizure.
The next step in my journey was my neurosurgeon on 8-19-2004. He was one of the best in the Tidewater area and had removed an Aneurysm behind the eye of the wife of my manager at work and she was doing amazingly well. I thought if he could remove her Aneurysm, he could remove this curse from me. He first wanted me to see a radiologist to have an angiogram preformed so he could get a better picture of the AVM and also see how the blood was entering and exiting the malformation. They were able to get me an appointment with him on Sept.3 2004.
Our appointment with him was good. He was a young doctor with a great bedside manner. I liked him when he introduced himself and said "you look like a fairly healthy young man, what made you say awe shit and come to see me?" After I told him what had happened to that point he told me what I could expect with the angiogram. I accepted, so we got an appointment for the angiogram on Spet.24, 2004 at Norfolk Sentara Hospital. He also informed me as to a third treatment, that I could leave it alone, do nothing. He said he saw no trace of a bleed in my ct scan and that since I was 44 years old and you haven't had any symptoms till your one and only seizure and that can be controlled by medication. It could be another 44 years before it causes you anymore issues. If you proceed with treatment it could have profound effects. You could aggravate this thing. I told him I wanted to know more about it because I'd be nervous knowing it was there. Let's do the angiogram and well see what it shows. The more we know the more information we'll have to make our decision.
The day of the angiogram, I was a little nervous; well I'd never had a large needle stuck into my groin before. I was to find out it wasn't going to be the last. After they gave me a light sedative, I loosened up. Then I became aware of all the people coming in and out of the room looking at me lying tbhere naked from the waist down. a nice orderly came over and threw a cloth over my genitalia and said "maybe that will help keep you covered a little." All I could think of was the episode of Seinfeld were George has a problem with "Shrinkage". I wanted to crawl under the table. They inserted the needle in my groin and it was no longer a laughing matter. When they inserted the dye I could feel it coarse trough my body from head to toe, moving slowly from vessel to vessel, It was a wicked feeling. When it was over and the doctor came to tell my family and me how it went all I remember him saying was "it's a monster and it will be challenging, My office will be in touch." I would like you to see an associate of mine about radiation treatment.
I attached a photo of My angiogram
The days passed as we waited to hear from his office. I finally got tired of waiting and called to see about the appointment and they didn't know what I was referring to. It was weeks before I got my new appointment. On 11-4, 2004 to talk about radiation and during that time I scheduled a follow up appointment with my neurosurgeon on 11-11-2004.
My appointment with the radiologist on 11-4 wasn't as good as I hoped it would be. He told my wife and I that since the AVM was larger than 3 cm, Mine was 3cmx5cm it would have to be smaller than that for radiation to be effective. If you use radiation on an area larger than 3cm it could burn up a lot of good brain tissue. We will have to make it smaller with a process called an embolization. We will go to the artery that is feeding the AVM with a small tube, like when you had your angiogram but; this time we will insert special glue that will harden and block the flow of blood feeding the AVM. "Glue" I asked? Yes sir we'll take Crazy glue and mix some other ingredients to form a special compound that will harden on contact with blood, BUT if it doesn't harden on contact; it could travel and harden in the wrong place. What does that mean I asked? "If it was to harden in the brain it could cause a stroke or even death;It is a risk we must make you aware of." So the treatment that was to help me could be just as risky as the AVM. He then said that the treatment would start with my first embolization. After that we will look to see if we need to do another. If so, we will schedule another. Review the AVM again and repeat the process till we have shrunken the AVM to a size small enough to perform radiation treatment. And this will take how long? With not knowing how many embolizations it will take, we can't schedule one till we have finished and reviewed one. It could take a few weeks to a couple of months to get through the whole process. That would be a worse case scenario. No, in my mind a worse "case" would to have the glue travel to an area that would give me a stroke or death. Well I'm glad we made an appointment with the neurosurgeon. At this time, having the AVM removed surgically might not be too bad after all.
On 11-11-2004 we went to the neurosurgeon, It was my 45th birthday. I had brought the films from my angiogram to have the doctor review. After he reviewed them he thought radiation would be the best way to treat the AVM. I asked him point blank if he would remove this AVM from me. He told me that it appeared to him that the AVM was being fed primarily from one vein. He wanted to know why my radiologist hadn't looked to see if a shunt or a balloon could be used to shut down that one vein. It had not been mentioned I replied. Well at that point he wanted me to see a radiologist at the University of Virginia to see if that could be an option and set me an appointment with her on 12-10-2004. I left his office with the clear understanding that he didn't want to mess with the thing. I started to get the terrible feeling that the AVM would mean the death of me. I refused to start planning my funeral, and looked forward to my visit at UVA.
We went to UVA on a crisp December morning and I enjoyed the drive in and how relaxing the campus looked to me. My wife and I made our way and found a parking place in front of the West complex. I had taken a risk and drove us in that morning. It had not been the required 6 months since my seizure, but I hadn't drove one time till that morning and my wife who had been by my side and driven me everywhere I needed to be; had never drove a long distance like that before. We agreed to put her behind the wheel on the way home to get her feet wet.
My appointment went well and I liked the doctor and her bedside manners. She reviewed all my films and records and informed me that balloons would not do well; they had stopped using that method because the AVM would find another source to feed it and would be back and we would have to fight it all over again. The best way to treat my AVM was with Gamma-Knife, a radiation procedure. it had been co-invented by one of the physicians on staff at the college. He oversaw all procedures with the unit. She told me that I would still need embolization to get the AVM to a size that Gamma Knife could treat. How long will we have to be here I asked? She said that since they treat people from all over the nation; it was their practice to bring you in and do the first embolization, review the outcome along with a day of rest for me. On the third day we would perform another embolization if needed, or Gamma-Knife. You will have one day of treatment then one day of rest till the whole procedure is complete. You don't leave us till you're ready to go home and that could be as soon as 4 days.
At that point their neurosurgeon came in to see me. He also agreed that Gamma Knife would be the best way to treat my AVM. I would not remove this by surgery unless there was evidence of bleeding, which mine had not bled at that time. With that I said I wanted to go home and think. Let us enjoy Christmas and New Year and I'll get back to you. We got into our car and headed home for some serious thinking. My wife drove home as I squirmed in the passenger seat. I don't think it was her driving bad as it was me thinking of this Dammed thing in my head. We enjoyed our Christmas and our new year. We made our pans to go back to UVA on March 22, 2005 to start my treatment.
I saw in the paper that the Eagles were coming in concert on March15 and since I'd been a big fan for a long time, I went out to get tickets to see them one more time. At work, I was getting them ready for my absence. I'll be gone for a week, I thought. I was talking to my boss and asked him to see if any of his good friends could get tickets to the ACC basketball tournament. He knew a lot of people and I hoped he could get me a couple of tickets before I went to fight this AVM. I told him it was one thing I wanted to do before I die. I was trying to put a guilt trip on him and it must have worked. He found tickets for my wife and me to go to Washington D.C. and see the tournament, March 10, 11, 12, and 13. After the great weekend of basketball, we'll come home and go to the Eagle's concert. Then I'll be ready to fight the AVM.
I was getting ready and scared I'd not come back to get another chance to do these things I so wanted to do. I had been reading people's stories on the internet and started to realize this was a big deal. Valerie and I went to the ACC tournament and had a great time with my date at UVA coming up fast. My team didn't win, but the fact that we were there was so thrilling to me, I must have had a smile that wouldn't end. We got back home and headed for the Eagles concert. It was the best show I had seen them do, and I had seen them 5 times before. I don't know if they were really that much better than they had been in the other shows I'd seen or was it the fact of my health that made me appreciate them much more. Either way, I was ready for my AVM showdown.
Well this must be a big deal because my sister Joan and her husband Jim has flown in from Phoenix, Arizona. They will join my sister Debbie and my Mother as the team that will accompany Valerie and me to UVA. We all got in the Explorer and headed up to UVA on Monday March 22, 2005 for my appointment on Tuesday. The 23rd. my whole family got together for what I was calling my last supper. It's the last thing I recall about our trip. I made it through the first embolization and the team had high hopes, I was to rest and prepare for my next embolization. During the first embolization the Doctor found two aneurysms and she blocked off one and was going after the other when we had the second embolization. I don't know if it was the change in the flow of blood within the AVM or if it was just the fact that my luck had ran out, the AVM ruptured that night. It was to the credit of a nurse that was watching me that night; she noticed I was having difficulties and was on the "on set of coma" . She called the team in to drill a hole in the top of my skull to let the blood escape. They had saved my life and kept me from sliding into coma.
The urgency of the situation changed and they wanted to surgically remove the AVM but not until they allowed me to recover from the "cerebral hemorhage." Then after another embolization to get the AVM smaller. My appointment for surgery was set for April 5. I had been scared that they were going to drill 3 holes in my skull to attach the Gamma-Knife mechanism, now I have had a stroke and was betting ready for brain surgery.
The 2nd embolization went well and I made it through brain surgery with flying colors. They sent me home in an ambulance and I don't remember the trip home. UVA had set up two follow-up appointments. On June 3rd we went back to see the surgeon that had preformed the surgery. He came in and with a stern voice, told us Mr. and Mrs. Craft, the AVM that you came to see us about is gone. I have removed it from your brain. You did experience a bleed from which you will have to recover from. I knew that because I was still in a wheel chair. I had re-learned to walk short distances but not through the complex at UVA. My wife had wheeled me into his office. I shook his hand and thanked him. He told me to go ahead and live my life. call us back and let us know how you are recovering.
As I left his office the nurses from the neurosurgical ICU grabbed my wife and me to have our picture taken. They had a "wall of fame." With many photos of patients whom had survived from many different problems. They wanted our photo to add to the collection. I sat in the wheelchair with my wife by my side where she had been since I started this journey. They took our photo and I started to thank each one for having helped us through this ordeal. We got in our car and headed back to Chesapeake so I could go back to rehab.
I had graduated to the day program. It started at 8 am and lasted till 2 pm. They were teaching me how to walk long distances, how to use my left hand, and how to do everyday tasks that I had started to take for granted before the stroke. What had been a brain bleed was now a stroke. You can call it what you may, but I met a number a people with each their own stories and handicaps they were trying to overcome. I had a great amount of respect for each of them. When you wake up to the fact you can't walk, for that matter not even able to tie your shoelaces, you now have to start from scratch and I tell you it's a lot harder the second time. That's fine, because I had borrowed a line from a comedian and started to say..."Get er done"
I was now determined to recover all I had lost from the stroke. It's a lot easier said than done. I still had that upcoming appointment with the ophthalmologist at UVA and I was not going to have my wife wheel me around in that wheelchair again. It was time to "get er done" and start walking long distances. I even walked up to my old job that was about a 1/2 mile walk. It was nice to see everyone. I had gone back in August to go back to work and was told to come back when I was 100%. That's right, after twenty years of employment they were afraid that I would hurt myself on their property. I thought I would be able to do a desk job, but they didn't want to put me in one. It was all or nothing. I was parts manager at a local tractor dealership; I did paperwork and handled customers. Not any longer. I needed to concentrate on the task at hand, walking.
By the time we went back to UVA I walked the complex from one end to the other with Valerie by my side once again. I was able to walk up to the people who had saved my life and removed the AVM and shake their hands and get an occasional hug. They took another picture this time I'm standing beside my wife. I have two photos on their "wall of fame".
My appointment with their ophthalmologist was a big waste of time. I had gone seen him to find out what was causing my left side deficit. I had no left side peripheral vision in either eye. They did all their tests and he came up to me and said sir, this is optic nerve damage. I can't give you a little pill, I can't operate on this, and it will not regenerate. There are no exercises that will benefit. Sir, what you got is what you got; now go learn to live with it. I wasn't looking for a miracle; I'd got mine when I survived the stroke. I was hoping for someone to tell me ways to go about living day to day with my visual impairment. If it weren't for the high regards I held for the hospital as a whole, I would have told that arrogant slob where he could go. But that wouldn't help me and only bring me down to his level. So I walked out so I could learn to live with it.
My wife drove me home and I began the task of applying for Social Security Disability. I had a long term disability insurance policy I had enrolled in when I started my job it was a policy that was paid for by the employee. I'd gotten the policy when I was a lot younger, at a time of my life when I didn't make a lot of good decisions. Well I did make one good decision. I had a long term disability policy when I needed it, and boy did I need it. My wife was employed and making good money, but when you are a two income family and one income stops, it hurts. I had been getting a bunch of paper work from my disability and they kept making it harder for me to keep my benefits coming in and SSDI hadn't approved me for disability. I got a letter that their doctors wanted to evaluate me. Some friends suggested that I might need to get a lawyer. I replied that I wasn't going to sue the government for disability, I wasn't going to sue my long term disability insurance co for benefits and I weren't going to sue my employer to get my job back. I'll just keep on fighting. I'm glad it didn't come to that.
I have been accepted by Social Security and that will keep us going until I can get back to work. In my days of going to rehab I had see an advertisement from the Virginia Dept. of rehab services for people with disabilities who need help with finding employment. I took down the information and contacted them. They sent me more paperwork to fill out and I applied for assistance. They had me in for a job evaluation and everyone was pleasant. My arm and hand shakes back and forth now and it did at the time of the evaluation. After a few weeks they contacted me back to tell me I need to address the issue of my shaking left arm and hand before they could help me find employment. A state dept to help people with disabilities can't help me because I have a disability. What's new? Could I expect anything more?
Here I am typing this story down and it's February 2006. Eleven months after my stroke and I still want to go back to work. Maybe I shouldn't push it to much to go back to work. I am still collecting SSDI and my long term disability but it's not the same. I don't feel like I'm a true provider for my wife. I need to feel like I'm doing all I can to provide an income for my family. And I just can't feel that way without a job.
I just got a change of appointment with my new neurologist. It is now on March 7th and I hope he can help me with this tingling on my left side and these uncontrolled movements in my left arm and hand. My stride in my walk is getting better, but a long walk still tires my left leg. I hope he can help with the injury to my Thalamus and basal ganglia.
I have learned a lot with this experience, and have met a lot of nice and interesting people. I learned that don't ask for things to often or they might come true, and in a way you weren't counting on. As in my old job when it goes crazy and I was multitasking too much at one time I'd go to people and ask them to shoot me. I was just joking and trying to laugh in the face of adversity. But in December 2005, after a ct scan the neurologist called me and asked me if I had been shot in the head. I told him I think I would remember that. He explained that the ct showed that I had metal fragments in my head and a hole in the right side of my brain. The metal was from the titanium staples that were now holding my skull together and the hole was from the removal of the AVM. My wish had come true. I had also wished that someone would take me away from that job, well that too did come to pass. So I will be careful with my whishes in the future.
I was never really a faithful follower of Jesus and our Lord God, but to have lived through the past year, I know I had help from heaven and I will always be thankful of the second chance of life I'd been given. I have learned not to ask for help of therapist whom you are no longer under their care. I had finished my rehab and had been out for a few weeks when my left leg started to twist when I walked. I called the therapist I'd been seeing to ask if she knew what I could do to make it better. She replied James, we do not want you back here, that is called regression, and you are not going to regress, you are going to progress. She asked me if I'd been walking each day for a least 40 minuets to an hour. I told her I had a treadmill I had been using. She told me that was controlled walking and I needed to get my ass outside and start walking. Well I have done what she asked of me with not much success. So I'm not going to regress. I will progress and I hope the new neurologist can shed some light to how my body is reacting to my brain injury.
I have learned that friends and people you have known don't call or come around after a major medical event. They will ask how you are doing when you call; they just stop making the first move. I will continue my struggle to regain the life I knew and with God's help, I will "get er done"
I also have learned that God has a plan and we don't know what it is till it is done. Before I lost the right to drive, I won a Richard Petty Driving experience at Charlotte Motor Speedway. They put me in a race car and I drove it at 147 miles an hour. I still relive it in my mind. If I never drive again, I have that to remember.
My father died 9 years ago, and Valerie and I moved in with my mother to help her with her house. It has been a big help as she drives me to appointments and keeps me company during the days Valerie has to work. I have grown closer to my mother during this time. God gave me a chance to get to know my mother along with having a companion during the day.
My wife and I have just got back from the appointment at UVA with the new neurologist. It wasn't what I wanted but it wasn't gloom and doom. As for the doctor, he was smart and preformed a complete examination. He had some new recommendations on new medications to help me with my tingling and a new anticonvulsant. He said I was too young to be on Dilantin for long periods. I asked how long he thought I would need to be on anti-seizure medication. He replied that the AVM was very deep in my brain and the removal of the AVM along with the bleed had done a great amount of damage to my brain. He said I would need anti seizure medication for the rest of my life. I just will have to think of it as my insulin.
As for my tremors, he had no medication he thought would help me. He than said that he thought my best chance to resolve my tremors was a new procedure now as "deep brain stimulation". He said it was a low risk procedure where they would insert a control box in my shoulder and run wires from it to an electrode that will be inserted into a hole they will drill in my brain. It acts like a pacemaker for the brain. I do not want them to perform any more procedures on my brain. I can only pray that the new medication will help me more than the doctor believes it will. I don't think my tremor is that significant to warrant them to drill a hole in my brain and insert an electrode? It's good to know they have help for people, who have Parkinson's or other violent tremors, but I will have to think long and hard before I let them drill a hole in my brain. I do not know if I can find a job with my tremor, but I will have to try long and hard before Deep Brain Stimulation. Besides, who will hire someone with an electrode sticking out of their head? Damn if I do damn if I don't.
I asked the doctor while I was at UVA if he thought I could have an occasional alcoholic beverage. He told me to go right ahead. One will not hurt you or interfere with any medication, but just one. The more you drink, the possibility of a seizure increases. So if you want a drink, have only one. That night when Valerie and I went to dinner I had my first drink since July 8, 2004. It was so good. I was never a heavy drinker or a person who had to drink every night, but I did like to have some on occasion. I wanted it even more when I was told you can't have a drink at all. Well I had one and I'm still here. Now I can only pray the new medication will allow me to continue my life. I am waiting to hear about it and look forward to trying it.
Update: 30 October 2006
Since my narritive was first posted on March 10 2006, I've been waiting for a major event in my recovery to send in an update. I've found out that sometimes we don't have major setbacks or achievements. Us who live with brain injury celebrate the small things that happen every day. Like walking around the mall alone, or cutting the grass. Cooking dinner and gift-wrapping a present. These small things are big when you live with brain injury. So I needed to update my narritive and thank the family members for helping me when I was in my beginning stages of recovery.
Thank you to all that e-mailed me with wishes and support. Royella and Joan have been good friends though this time and Marie has been a great friend and confidant. I have done my best to be there for them as they have been there for me. I get inspiration from these beautiful new friends that I've met through this support group. God works in special ways. I never wanted the AVM, but with it I've met a bunch of wonderful people.
I have spent hours on my computer reading new narratives and updates, then taking time to reply to each one and telling them to keep the faith and pray to God for the strength to survive. That's what I have done, and what I want to do. I'm still praying each day for all the family members and myself.
Today I still live with tingling, tremors, and visual left side deficient, but I'm a survivor. The tingling has gotten better with the medication that was recommended by UVA. Nortriptyline has dulled the tingling so it is tolerable. The medications I've taken for the tremors have been ineffective to date. I was asked by a family member if I thought that physical and occupational therapy helped me or was it a waste of time and money. For me, PT and OT was a big benefit. When I first came home after my stroke, I couldn't walk or use my left hand very well. PT taught me what exercises I needed to do to regain my strength and my ability to walk. OT taught me how to use the vision I had and how to use my hand to get the best of what it could do. Plus therapy gave me the opportunity to talk and socialize with different people living past stroke. All the therapists I dealt with were friendly and knowledgeable. Without their help, I might still be in a wheelchair. I might have to get my wife to cut my meals so I could eat them, but now I cut my own steak, thank you.
I had two therapists' that tried everything they could do to help me pass a drivers test. Even With all their efforts, I could never pass the visual perception part of the test. Paula and April tried their best to help me pass the test. I thank them for their outstanding efforts. The last time I was there, they asked me to give my eyes time to heal before I try again. I'm in no hurry, I'm not sure if I feel safe behind the wheel. I will try to pass the test again, but I'll take my time and wait for my vision to get better.
My health insurance has stopped paying for therapy, so I decided to join the YMCA to exercise all I can. I first joined after a talk with their aqua instructor at a stroke support meeting. They were offering a stroke after care program, the class helped with balance issues after a stroke. I was in the class for sixteen weeks. It was good for me and now I just do weightlifting two times a week, And aqua aerobics three times a week. It's still a benefit to me as I get out of the house and talk to friends I've met there and build up my physical strength. I'm not sure what my future holds, but I'll be strong enough to handle anything that comes my way.
I met a young lady a few months ago online and she has had multiple AVMs. AVMs diagnosed as much as eighteen years apart. It got my attention; she just had surgery on her fourth and is fighting to survive a hard surgery. I'm praying for you Cari Ann. I pray that I never have to battle another AVM; I'm still trying to win my battle over the first one.
I have started to look into vocational opportunities and employment again. Many family members have warned me to be careful with going too far too fast and loosing my SSDI. I am trying to heed their concerns, but I want to carry on with my life. I was considering going back to school, but I'm not sure how good I would do with the brain injury. I guess we never know where we are in our recovery until you try to go back to work or go back to school.
Here I am talking about the brain injury again. My wife gets concerned if I mention it too often, and only talk about the bad things it brought to our lives. She wants me to talk of all the good things I have been able to do after the bleed and surgery. I think of it all the time and it's hard not to talk about something that has had a dramatic effect on your life, bad and good. I pray that one day I never think of it, that I will be completely healed and recovered. I'm not sure how long that will take, but I thank God for giving me the opportunity to recover and survive an AVM.
My wife and I have been going to church regularly now days. We have so much to be thankful for, and we know who we need to thank. God gave us the insight to choose UVA for treatment and he gave the doctors the skills they needed to remove the AVM. He also sent an angel to look over me. If it wasn't for the young nurse that was watching me the night of my AVM bleed, I might have more damage to my brain than I have or I might have died.
I have noticed one thing, in the months preceding my AVM removal; I became an extremely light sleeper. My wife's breathing and snoring would keep me awake all night. Even the cat walking around would wake me up. I almost never got a good nights sleep. I would be tired all day and I was always edgy and moody. And after the AVM removal, I sleep like a log. I wake up refreshed and with all that's different in my life, I've got a better attitude. I take the same meds in the day as I take at night, and I'm never sleepy during the day. So it must have been the AVM that disturbed my sleep and not my wife. I've had to apologize to her many times for blaming her for all my nights of no sleep. It wasn't her or the cat, it was the damn AVM.
My old friends still don't call or come over. But I've met new friends at the stroke support group and church. Life hasn't stopped, it has only changed. To all newcomers who read this narritive, I pray I've given you the hope and faith you need to fight your AVM or aneurysm. Your life might change, but it changed the day you were diagnosed. Sometimes change is good. You can lie around discouraged or you can get determined. Life is only what we make of it. I will make the most of mine and I will fight on. I'll update my narritive as my recovery continues.
Thank family for this forum to tell our stories, and the opportunity to meet people with similar issues. God Bless everyone that is affected by AVMs and aneurysms.
Update: 26 September 2007
My summer vacation started on August 20 when Valerie and I loaded up the Explorer for a trip to Baltimore for an appointment at Johns Hopkins. I had been told by many that I needn't waste my time with your every day neurologist. Go see the best and stop messing with these local doctors. I can't say much for my appointment other than they do have a good method of getting the patients paperwork filled and in to the doctor's office. I've been dealing with my issues long enough to know that it's not the appointment that's important, it's the benefit I get from the appointment. He did tell me one thing I'd been thinking for a while. He said that the issues I live with today Tingling and tremors might be with me for the rest of my life. The best I can do is to find some measure of relief from Pharmaceuticals and see what time will bring. The doctor has sent his recommendations to my Neurologist here and I've started to try the new medications slowly. I'll wait to pass judgment on the appointment after I've completed the tests of all his recommendations. So far I've not had any bad side effects from the new medication and I've gotten no benefit.
After Valerie and I returned home we started to prepare for our Labor Day trip down Interstate 85 for a gathering of fellow survivors and friends. We were going to Carrollton Georgia to have a Birthday Celebration and a survivor meeting. Bill Maples was turning another year older, that's fine Dr. Maples. Age isn't a number, it's an attitude. Bill's attitude is that of a young man and along with his wife Pat, They welcomed us there like we've been friends forever.
The first survivor I met was Susan Weinholtz and her husband Bill. They were a wonderful couple from Pennsylvania and so nice to drive Valerie and I around the town that they've became so familiar with. I believe that they want to move away from Pennsylvania and become neighbors with Bill. They kept looking at the homes in Bill's neighborhood and talking about the improvements being done at each house and what the price to that home would be.
The first night in town, we were going to the Long Branch Restraunt and Saloon for Bill's birthday extravaganza. Once we walked in the place I was honored to meet Terry Day and her riding companion Bruce Smith. I could see her beautiful red hair from across the room. We had all joked about the firm personality of Terry and the obnoxious behavior of Bruce and if Terry was going to leave him on the side of the road somewhere between Florida and Georgia. I was amazed to see that Bruce made it with all his Canadian wit. Terry had found an intelligent man somewhere in all that foolishness. I believe he puts on this show for all of us on the support site, as the man I met in Carrollton was nice and for the most part a gentleman. He is an intelligent man that has a bright future ahead of him.
And then there was Bill Maples with that older intelligent look about him. You know, kinda like Rhett Butler had lived all this time and was standing there in front of us. I wanted to yell Tara is burning! And there was Pat his beloved wife looking like Scarlett and staying by his side. I found out it wasn't Tara that was burning, it was his birthday cake. I was surprised that he had enough wind to blow out all those candles. And then someone had given him those trick candles that don't ever go out. He kept blowing and blowing and he finely blew them all out, and he didn't need oxygen. That's the way to show those wise guys.
Bill got through the evening with all our joking around and the next day we met the last member of the gang and that was the fine young lady Jaime Majors. She had been able to arrange to get some time to join us at Bill's home and it was a pleasure to meet her. And the best dinner I had that whole time was when Susan made us Spaghetti and meatballs. She is an awesome chef and I don't understand how her husband keeps his manly figure. Valerie says she also makes a great Latte. She should know, she spends most of her mornings at the Coffee house.
Speaking of Coffee houses, my new bestest friend Terry kept talking about opening a coffee house in the Carrollton area or any other area that don't already have one on every corner. I know she could make a success with it and if she could team up with Susan, start an Italian restaurant\coffee house. I don't understand why a man hasn't settled down and married that wonderful young lady; she's defiantly a great catch.
One thing I've learned about future meetings is that the family members need to keep these gatherings small and intimate. It would have been nice to have a greater number of survivors there, but if there were we wouldn't have been able to get together and go to breakfast, drinking coffee at the local place, go to lunch, or get together for great dinners with the ease we could during our stay in Carrollton. Until Oprah or Montel wants to organize and sponsor our meetings, let's keep it small.
I must take the time to thank my beautiful wife for driving us all around the east coast during the last couple of weeks. She has done a wonderful job driving and has come a long way since she drove us back from Charlottesville after my first appointment at UVA. I want to thank each of the family members that attended our meeting in Carrollton; you made it a vacation I'll never forget. I Love each of you. I attached a photo of Bill's birthday. I pray we can get together soon, it was a healing adventure and I'll be forever thankful for God's guidance in helping me gather these beautiful family members together. God is gracious.
Update: 27 January 2009
I think it's about time for me to check in with our family. I just turned fifty and I'm happy to be here. When I sit back and think of the years preceding the discovery of my AVM I believe it was trying to tell me hello, I just didn't want to listen. I'm getting older and I'm going to listen to my body better. I want to enjoy my GOLDEN years.
My deficits remain the same; I've a bounce in my left arm and hand. I don't have any left peripheral vision although I'm better with adjusting to it and I've not smacked my face or foot into a solid object in a long time. My entire left side tingles as if it were going to sleep. I feel this continuously day and night. No medication has taken this away from me; I know this pain really means it's alive. I know it could be worse; I might not feel anything at all. Since the neurosurgeon cut into my thalamus and my basil ganglia while removing the AVM it could have taken all sensory perception on my left side. My short term memory has lapses and I must be thankful for what I have.
After meeting all my new Best Friends in Carrollton Georgia in September 2006 I lost the most important Friend I had. With the passing of Bill Maples All of the survivors lost a man that would fight for them forever. Shortly after his passing Susan Weinholtz took over Leadership of our site and asked for my help, it was God Blessing me again. Susan has had patience with me as I learn the family business; I don't want her to get Uncle Guido after me. I also must win the Families' confidence. I'm receiving new narratives from new members although I'm not getting many updates from older members. Most family members with numerous years' membership here know Susan and trust her to get it right. I understand this and I also know I need to relieve some of the load off her shoulders. So family please give me your confidence and I promise to do you right. FYI After joining Susan; I added an e-mail address for my Support Site communications. I use this address for support site business only;
Updates, New narratives, support needed, and Questions to the family:Jim Craft Jr.
All day-to-day communications:Jim Craft Jr.
I continue to go to the YMCA to get my own rehabilitation. I attend water aerobic classes and spend time in the weight room.
In the last couple of months Valerie and I have gone to a couple of concerts. We just went to see the Eagles and back in December we caught up with Susan and her Husband and went to see John Prine. I don't believe Susan and Bill had ever heard of him but they joined us to help their out-of-town friends go to a show. Now that shows true friendship. I think they enjoyed themselves and Valerie and I definitely did. We've been going up to see Susan and Bill often since she took charge of the support site. She's been teaching me the Business and when we're not doing business we go out and have fun.
Since I was going to update my Narrative I thought I'd update our photo as well. The New photo show's Valerie and I having fun on a stroke support cruise back in 2006.
This Support system has brought many friends into my life and God Blessed me when he stirred my soul to join up. And for someone that might be reading this site for the first time please get involved. You don't know how God will bless you. Thank you Susan for taking over when Bill passed, I see plenty of Bill Maples in you when we get together. I know he's watching us from his Heavenly Home and I only want to say Thank You Dr. Maples.
Update: 9 June 2009
I'm not sure where to start in this new update so lets start with I was told from the day I woke up from the brain surgery that I'd have the risk of seizure for the rest of my life as the result of my brain injury. Then some time later a doctor in charge of my rehab questioned my need to use an anticonvulsant and told me to make the neurologist prove that I needed it. As the years went by; I never questioned my need for an anticonvulsant and never had a "second" seizure.
My anticonvulsant medication has been Trileptal since 2006 and when I first started using Trileptal it helped with me with my neuropathic pain as well. As the months and years went by my neuropathic pain slowly started to get more intense and I started to use Keppra about six months ago in combination with Trileptal to reduce the pain. I started to have a problem with sodium deficiency in my last few blood tests and my neuropathic pain had been increasing also. It was decided that Trileptal was the cause and I needed to change my anticonvulsant. I started my withdrawal from Trileptal slowly and over the course of two months stopped the medication. I had this idea that if I also stopped the Keppra I could start a new anticonvulsant as soon as possible. I never told my neurologist of my plan to stop taking Keppra and by stopping both medications I lowered my seizure threshold.
I have been a member of my Local Greenbrier YMCA for three years now and I'm very active in Aquatic Aerobics classes five days a week. On June 2 I proved the necessity of taking an anticonvulsant. While at the YMCA I was in the pool jogging and jumping around when I seized. The instructor Jason and the lifeguard Jeff pulled me out of the water and on to the deck of the pool. The fine staff there called emergency and stayed by my side until the ambulance drove me away. I can only say God blessed me to be there and in their care.
After waking up at the hospital I told the nurses of my stopping medication and my wife arrived to tell them the same. After a short time the hospital released me with instructions to go home and start taking my medication again. On the way home in the car I seized a second time. My wife did an outstanding job of keeping control of the Explorer while she pulled over to the side of the road. She got out and ran over to help keep me in the seat and started to try to get the attention of passers by to help her. Three people stopped to help and called 911 for us and back to the hospital we went; so they could make the decision to give me medication themselves. They gave me Keppra and after a few hours sent me home once more.
We know for the most part seizures are not life-threatening events for the person having the seizure and are disturbing events for the people who are there to witness the seizure occurring. I was blessed that during the two seizures; I didn't hurt myself, my wife or anyone around me in the pool at the Y. Four days after my seizures I went back to the Y and they welcomed me back into the pool like nothing ever happened although they did keep a close eye on me. I remembered back at the time of my brain surgery that I lost my friends and people were afraid to be around me. I know now that God has blessed me with friends that care about me and want me to come and be a part of the YMCA family , That means more to me than they could ever know. I am proud to be a member of the Greenbrier Family YMCA and I'll continue to do the best I can in maintaining my own rehabilitation from Stroke and Brain Surgery by Aquatic Aerobic exercise and weight Training 5 days a week at the YMCA until I gain employment once more. I'm back at my computer and I'm here to help anyone with our Support Site. So please e-mail me if the need arises. God Bless all the staff at the Y and Every Survivor and Friend that has stayed by my side during these seizure events.
Discussion, Comments, or Questions:Jim
© Copyright 2006 Jim Craft Jr.
All Rights Reserved - Fair Use
acknowledged
