I am 45 years old now living in Spartanburg, South Carolina. I grew up in Marietta Georgia, about 20 miles outside Atlanta. I graduated high school and attended college at a medium size school in south Georgia, Valdosta State University where I received a degree, a BA in communications. After school I worked as a police officer for four years. I then started working in the lumber business (which my whole family had worked in). I moved up with company to Assistant Manager, and after about a year in that position my life was changed. I found out I had an AVM. Life would never be the same. I worked as long as I could but finally had to go on disability. I also found there were some days when I could not care for myself and had to move to Spartanburg where my mother lives. I still live alone but there are some times when I need help and am fortunate enough to have a mother who gives a major part of her life to help me.
30 January 1999
It is hard to know where to begin, with something that so totally changes your life, both physically and mentally. I only gained the ability to look through the web with a Christmas gift I received this past Christmas. I guess by luck I found this support page, and brought it to the attention of family. I was encouraged to write my own narrative, but have put it off, lacking my abilities to put into words my experiences with my AVM, but I am ready to try — so here goes.
First of all, as one can tell by reading the narratives, almost all AVMs occur in the brain or are neurological by nature. I found out, however other areas of the body can be affected, as my AVM is in my right pelvic area.
In 1986, at 32 years of age my symptoms first began to manifest themselves. I was an Assistant-Manager of a lumber company, and a workaholic. I loved my job and would happily work 12-14 hours a day. My right leg began to swell to an enormous size, and I was in constant pain. My boss noticed me limping and the swelling in my leg. He kept telling me to see a doctor. However, I could never find the time and told him I was sure it was just damage to my leg from a case of phlebitis a few years back,due to an automobile accident. Finally with a noticeable increase in swelling and pain he told me on a Friday afternoon, "Go home and don't come back until you have clearance from a doctor." It was an order that would save my life. Just going home early on Friday was enough to drive me crazy, so on Saturday I went to the ER at a local community hospital. I still thought nothing was wrong, even after some test were run, and I was told to return Monday morning for some more detailed test that something did not look right. Without being given the clearance for return to work I returned Monday morning.
On Monday the first test run was a venogram. I still thought everyone was being silly(this is all due to past case of phlebitis) After the venogram I was immediate admitted and was told they didn't know what the problem was yet, but I had a potential serious condition.It had nothing to do with phlebitis. I was in the hospital for about one week, and had a very good young resident assigned to my case. He was determined to find the problem. Finally after numerous test and x-rays he told me I had an AVM, which meant nothing to me. He explained the rare nature of an AVM and mine was even rarer being located in the pelvis rather than the head. I was sent to Emory hospital in Atlanta where still not knowing the serious nature of an AVM was told due to the location and size of AVM surgery was not possible that it would be treated by embolization, which was done.
Over the next three years my problems began to worsen, the leg swelling which had improved for about a year returned worse than before,along with the pain.In addition now I suffered with urinary retention, impotence and severe rectal bleeding.
I had by this time, 1989, moved to Columbia, SC, and had the good fortune of the vascular department At the University of South Carolina Medical School to try to help me. My records were sent to the Mayo Clinic, the Ochsner Clinic and various hospitals all over the nation all of which said they could not help me.
Finally I was contacted by Dr. Hugh Trout at George Washington University Hospital in Washington, DC, who agreed to see me. On August 28, 1989 an arteriogram was done. Dr Trout(who I would urge anyone with AVM problems to see) told me that embolization had not only not helped me, but had caused AVM to grow. It was he said the largest he had ever seen either in person or published material,about the size of a grapefruit about 8 cm transversely. It was only by the grace of God it had not ruptured. I was told it was fed by about 15-20 arterial feeders. Surgery would be extremely difficult, but I knew without it I would die. So on August 29, 1989, I underwent surgery. The surgery took from 8 AM until 11 PM and I lost approximately 60 units of blood. My temperature dropped to 32 C, because of blood loss. It was brought back up by insertion of a chest tube and pouring warm water directly into chest.I came very close to dying but I did survive. Recovery was long and hard and made more painful due to the fact I developed blood clots in right pelvis and legs.
I was able to go home after about eight weeks and even returned to work part time, however complications developed and I was asked to return to Washington. I had same procedure I read in another narrative. An incision was made in my jugular vein and a Greenfield filter was placed in the Vena Cava near my heart to stop any clots from going to my heart and lungs. The clots in my right leg were attempted to be dissolved with the clot buster Urokinase — which failed. At this time a second operation was done to try to remove blockage of external lilac vein and residual AVM. This operation unfortunately did not make me better, but worse as in addition to right pelvic clots I developed blood clots in left leg and pelvis which the doctors could never explain. Again hospital stay was about eight weeks.
The next year in addition to being in almost constant pain, I developed congestive heart failure, again due to the AVM. I was told I was born with it as most people that have AVMs are. It just took until my early 30's to cause problems. Dr Trout said I had been shunting blood in my pelvis my whole life which put a tremendous strain on my heart causing congestive heart failure. Also rectal bleeding returned so another operation was done to remove collateral veins.
The next few years were very hard. I lost the ability to empty bladder due to residual AVM putting pressure on it, so now I either have to perform self catherizations or wear a folly 24 hours a day. I have suffered from numerous leg ulcers that took over a year to heal due to poor circulation. The main problem has been pain from waist down. It finally crippled me enough where I had to go on full time disability. In 1993 Dr Trout attempted a venous bypass with a plastic vein running from the femoral vein to inferior vena cava.I was told chances were slim at best for this to work.He was right the bypass clotted off before I left the hospital.
Since then I have been to numerous pain clinics none of which have helped. This past year most likely due to need and daily use of oral pain medicines my colon became atonic and I had to have an ileostomy in fact they had to do two ileostomy operations as the first one did not work. I was in hospital from July 3 until Nov 1 and had four operations this time.
My life has been saved by all the operations I have had, but my life has been changed. Any comments feed back or questions especially where chronic pain in pelvis and legs is greatly appreciated. I have been blessed by the support of a loving family but being disabled the lost ability to work and changes in my body have been very hard,something that only another person who has experienced similar problems could understand. So as I said any feedback is greatly appreciated.
Update 25 Mar 1999
I wish this update was not necessary, for the past couple of weeks I have not been able to wear my compression stockings that I need to wear because of lack of circulation in my legs. The reason for not wearing them is due to an injury to the foot, which caused an infection and removal of toe nails.
Because, I have not been wearing stockings my leg has swollen to twice its size and pain which is always bad has been very intense to the point of barely being able to get out of bed. The worse part however, is skin on the ankles has started to break down and sores have begun to form. the last time I got these ulcers on my leg it took about 1 1/2 years to clear them up and I almost lost my leg. It is similar to what a diabetic faces. I have started seeing a wound care specialist and hopefully we have caught the problem in the early stages and we can clear up these sores before they get really bad and lead to amputation, and also something can be done to reduce this pain
Update 15 Apr 1999
What is the old saying "I have good news and I have bad news." First the good news is the ulcers on my legs are not any worse. They have not improved much but at least we caught the problem in time and more than likely have saved my leg for now. The pain is still cripling but I have learned that is going to be a part of my life forever.
Now for the bad news–and I have to admit I have had a hard time accepting this. My bladder has completly failed and colapased. I dont know the exact reason because when the doctor was telling me I was not myself and complety tuned him out. It has something to do with presure and the resudial AVM in my pelvis robing blood from the bladder. I was able the past two years to preform self caths each time my bladder needed emptying. This is no longer possable I have to have a foly inserted with a ballon on the other end to keep my bladder inflated 24/7 now. I guess because I have lost my colon and now my bladder within six months it has been so hard to accept.
I have often wondered if I had to get an AVM which is worse to get it in the head like 90% of those that get them, or like I did in my pelvis. I guess we all have our own crosses to bear.
I did ask about surgery to corrrect this, and was told my heart is to weak now for any surgery unless life threating. Im not anxious for surgery right now anyway. I do ask every one to remembor me in prayer as I remembor each of you, and once again THANK YOU for this group.
Update 20 Jun 1999
Well my friends I have come through another crises with the help of my doctors and especially God.
The 9th of June started my latest close call, it was a bad night in every way. First of all about 9:00 PM we had a terrible storm, lighting hit right outside my window, and blew out my phones, and web-tv plus other electrical equipment. Then about an hour later I started getting violently ill, the bad thing is I could not call anyone, and my lifeline I wear around my neck works off the phone line, so it would not work. The only thing I could think to do was get a bucket and lie by the front door, and wait until I heard my neighbor getting her morning paper. I lay there all night and continued to be sick. Finally about 7:00 AM I heard her, I couldn't open the door in time so I crawled across the hall, and scratched on her door like a dog, before passing out I was able to ask her to call 911 and my mom.
I was rushed to the hospital, and they found out my electrolytes and especially potassium had plunged to critical levels. they started fluids and got them back up, but the reason for my sickness was either a blockage in my ostomy, or pressure on it from residual AVM. I was told last year , it lies very close to my ostomy, and some day it may wrap around it robbing blood, and shutting it down. They didn't know what they would do if that was the case. Thank God it turned out to be a blockage, but surgery was still a possibility. I knew I probably would not make it through another surgery, I'm still to weak, from my last go round, 4 surgeries between Sept-Nov last year.
With a lot of prayer and nothing by mouth not even ice chips, the blockage cleared last Monday, It was my own fault, my birthday was the 8th, and I had a small amount of popcorn, something forbidden to ostomy patients, I've learned my lesson.
I'm home still very weak, and about three steps backwards in my recovery. I'm also going through a lot of depression this time-it just seems like I get sick am getting almost back to normal and bamm I'm hit again. It makes me wonder if I'm a bad person, and being punished, but I know better than that our God doesn't do that, and someday, I'll know the reason for all this suffering. With help from God and my family here in our group I'll be fine. I ask for your continued prayer and I'm sorry for rambling on and venting a little.
Update 3 Dec 1999
Well I've hit another bump in the road, and for the time being the news is not the best in the world. Approximately. 3 weeks ago I noticed a large grapefruit sized bulge in my lower right abdomen, and it seemed to be getting bigger and harder - plus about 45 minutes after eating the pain became excruciating. It felt like I was being ripped apart. It became too much to eat - it wasn't worth the pain.
Since the large bulge was centered around my ostomy-two things were going through my mind. 1) A blockage in ostomy but since I was getting return I felt that was out. 2) My residual AVM in my pelvis was back and causing mischief.
Finally the pain became to much and I got admitted to the hospital. I had a whole battery of test run and the news at first was devastating to me. I have had so many surgeries in the right abdomen and pelvis, approximately 20 total, that I no longer have an abdominal wall or any muscle on my right side. Without the abs there is nothing to hold up the intestines so that is the bulge - and it also makes it harder for the food to pass through.
I'm so use to surgery , I asked when do we have it? That was the bad news - they all said with my past history, the size of my remaining AVM, collateral veins etc etc, I would not survive any major surgery. I guess I'll have to live like this. I can go through agony every time I eat, or opt for just being fed some nutrients through an IV. It's hard to accept I may have eaten my last real meal. I have had 3 opinions and all agreed
I want to thank you all for your prayers and concern, after Joyce Steadham notified the group of my latest trial. I am truly blessed by finding this site, y'all have helped more than you will ever know. We really are a family. I ask for your continued prayers, that maybe something can be done for me
God Bless you all.
Update 23 Dec 1999
Hello Family, and God Bless you all. This is more of a thank you than an update. As most of you know I began hemorrhaging from the mouth on the morning of December 6. I thought about waiting till light, it was 4 AM, to get to hospital. Dumb move. By the time I was rushed by ambulance to the ER and arrived the hemorrhage was violent and I was losing blood as fast as they could transfuse me.
Well the word went out to this wonderful family and our Great Lord was flooded with prayers from you, I know by all the e-mails I have to go through. [g]. There is no way I can thank each of you right now, I am still very tired and weak as I can ever remember. Each of you have given me the best Christmas gift there is, your care and prayers.
Still not sure what caused this latest problem, other than my esophagus was torn, and due to blood thinners I take for my AVM the bleeding was intensified. Again I search for the reason our father has spared me.
Hey good news, I am up to eating soup and soft foods. May the Lord that gave me another gift of life bless you all at this special time
Update 9 Feb 2000
Well I have news to report, the bad part is it is not good.Ever since my last stay in the hospital and return home-things have gone down hill on two fronts,all caused by the residual AVM left in my pelvis and abdomen.
First my legs, I had no idea legs could swell to such an enormous size, due to fluid buildup-they are so large and heavy, I cant lift them to walk - I have to slide them. The worse part is that now for the last week fluid is pouring out through the skin - when I say pouring my legs stay sopping wet - all this is causing a break down of the skin all over my legs-with infected sores forming.
Also no good news on the eating front-my ostomy has almost completely shut down - due to the fact of collateral veins putting pressure on it, that with the fact my abdominal wall is gone due to multiple surgery, 30 minutes after eating I am in such God awful pain its not worth eating
Tomorrow is a big day - a team of home nurses is coming for evaluation and action - they will probably wrap my legs in tight bandages which I will hate, but will save my legs, and they will probably take food away from me - and I will have to survive on IVs and TPN. Its all very hard and I ask for your prayers. I will update again soon. Thank You.
Update 20 Feb 2000
Well this is the update I've been dreading but at the same time knowing it was coming - just wish it hadnt come so fast. Many of you know that my mother who is my caregiver has been very sick herself lately. On Tuesday she was told that for the third time she has cancer. She is an amazing woman and if anyone can beat it she can, but at the same time all attention has to be turned to her recovery and my health has been going down hill very fast. A joint faimly and medical decision has been made that it is best that I be moved from my home to a full time nursing home.
I have accepted it is for the best - and maybe some of my problems can be better addressed at a home - such as getting better pain control. There is a lot to do and many questions to answer - so it will take at least 6-9 months before I can be moved.
I would appreciate any ideas where to look for help in getting things moving. I know I need to give up my assets but right now I am overwelmed with it all. Its tough to know at 45 I can't care for myself any more, but with prayer and the guidence of the lord I will make this new transition.
I sure have to find a place that allows my web-tv, I cant lose touch with this wonderful group.
Update 24 May 2000
I guess this could be called a brief update-as you know my legs have got to the critical point with open sores and infection, Tommorow I am being sent to a wound center to see if anything can be done. Every thing that has been done here has backfired. This problem is related to my pelvic AVM in that I have almost no circulation from my waist down. I am fearful that they will tell me nothing can be done, and I may end up losing my legs. I have turned everything over to God but still would appreciate any prayers
Update 1 Dec 2000
Its been quite a while since my last update and a lot has happened. First I just looked at my last update and I stated it would be 5 to 6 months before I would have to relocate to the nursing home. Well---- I forgot my sister who was in town could pull every string in the book. They had me moved in 1 week. I have to say this experience although needed has been the hardest thing emotionally in my life. First I had to hold a garage sale to get rid of 90% of my belongings. Its hard to describe the pain of watching strangers tear thru all you own looking for bargains when much of the things hold sentimental places in your heart. All I owned or about 90% gone in an afternoon. Then having to get rid of all my assets to qualify for the home. I now have not much more than the few things in my room and all monies to a bare minimum. Oh well nothing could prepare me for the culture shock of my new home. I thought there would be some elderly men I could talk to but at this home every one I have contact with is suffering from Alzheimer's disease and being 47 and every one else in 80s is hard. I have to keep an almost constnt watch on my things or someone will wonder in and take them
My biggest battle at first was with staff - they wanted to take my checkbook and other personal things from me. I also wanted to manage my own medications. They were not used to having someone who could think for themselves. There have been many arguments and compromises but things are a little better. My main problem is loneliness I just stay in room but I'm OK with the help of this family.
I also have been fighting to keep my legs. Not long after moving in I picked up an infection which with my lack of circulation due to AVM led to many problems. In fact as most know I'm just home from another 3 weeks in hospital.
It has been a painful battle. I went to wound center 3 days a week for about 4 months. Treatments lasted several hours and were similar to what a burn victim goes through, of pulling skin off and more. Finally the docs had decided to operate and amputate but an angel who works at wound center begged for a few more days and would spend hours working on them plus all the other times she worked on them. For now they are saved. I'm still not out of the woods but things are looking better.
Many have asked about my mother - Thank You. Praise God it looks like her cancer may be in remission. I know Godfather Bill likes to call us a family - I agree. Thanks to all for your prayers, letters and good thoughts. I really may have given up without you.
Update 29 Dec 2000
Well here we are ending another year, I was hoping to have good news to report after my doctors appointment yesterday. I guess I'm the only person who goes to a doctors appointment by ambulance, but its the only way I can get there. After waiting for 90 minutes because my doc was in surgery, he stopped to see me.
I have to say due to no circulation in my legs, the legs from knee down are in very bad shape , you can see the bones in the toes, and they pour fluid so entire feet have skin breaking down. He looked at them and said I really needed to have them amputated - which panicked me but then said I can't have an amputation, since I have no circulation, the wounds would never heal. That and it would create a new hole for fluid to escape from. He explained that most people have valves in their veins that push all the fluid up but I don't so the fluid just pours thru my skin in feet. The only thing we can do now is have my feet wrapped and dried three times a day - it is very painful especially between toes. I keep getting new sores on my legs but hopefully we can clear them up.
God Bless you all and have a great New Year.
Update: 25 Oct 2002
Overall health is not doing to good - as you know from multiple AVMs in my pelvis, nothing below my waist works. A couple of months ago had half of right foot amputated, now it looks like same to left foot is not far off. Pain in both legs is almost unbearable.
What I wanted to ask group about is what happened to me a couple of weeks ago. When I woke up entire left arm was black and blue, deep black and blue from brusises I guess. Also 3 large hard lumps on arm. I imediately thought Oh God not another one but I don't think it is an AVM. Doc has no ideas. Anyone out there have a guess.
Anyway thanks for caring keep me in your prayers, as I pray every day for this faimly.
Stephen Maffett