Established April 15, 1995
University of West Georgia Disclaimer
17 January 2005
My AVM was found quite by accident, I think. I was 33 years old at the time (35 now). November 2002...I'd had ringing in my right ear for a few months. My Primary Care Provider was concerned about hearing loss so he sent me to have a hearing test. The technician doing the hearing test said my hearing was fine but was concerned because the ringing was only on one side so he sent me to ENT for a closer look. The ENT doctor couldn't see anything so he ordered an MRI to look for a possible tumor behind my ear drum. The MRI was in March 2003. "Well, the good news is you don't have a tumor, BUT you DO have an enlarged blood vessel that you may want to talk to Neurosurgeon about. It's probably nothing to worry about, so it's up to you if you want to see Neurosurgeon. If it were me, I wouldn't be too concerned". But I was concerned so I asked for a referral to neurosurgeon. I'm in the military (Air Force) and they're pretty good about doing referral's and follow-ups. It may take 2-3 weeks, but eventually, you'll see someone.
I was stationed in San Antonio, TX, at this time. I made an appointment with Neurosurgeon on base. The doctor reviewed the MRI films, said it looked like an AVM in my left cerebella but wanted an angiogram to be certain. The angio confirmed the AVM, left cerebella, very close to the surface, approximately 2 x 2 x 1 cm. It was in the back, slightly to the left of my spine, and even with my ear. He referred me to a civilian specialist (Dr. Muwhad sp?) in Houston, TX, for embollization. Lots of paperwork fumbling followed because the military people at this military hospital didn't know how to handle a referral to a civilian doctor at a civilian hospital. Although San Antonio had a few neurosurgeon's, my doctor wanted me to go to Houston because he trusted Dr. Muwhad more than the doctors in San Antonio.
Finally, in July 2003, I was supposed to go to Houston for embollization. I would have to be there a whole week (pre-op, op and post-op). Well, that wasn't going to work for me. During all of this, I was applying for an assignment to Washington, DC, and my assignment was approved. I was to move to DC at the end of July. I asked the Neurosurgeon if I could put off treatment until I got to DC (surely there's a Neurosurgeon in the DC area!!) because I needed my family close by for support and THEY wanted to be there for me. All of my family is in West Virginia. The drive to DC is only 5 hours for them, Houston would've meant flying and hotels, etc. On top of that, I was due to leave Texas and move to DC only 2 weeks after my scheduled embollization. I just couldn't see doing that. I had appointments to go to, and household goods packing and pickup, during those 2 weeks; and how could I do the embollization then move that far away? What if something happened? Would I have to keep flying to Houston for follow-ups? So my doctor (neurosurgeon) said yes, I can wait until I got to DC but I needed to get back in "the system" as soon as I got settled in. Once I got to DC, I saw my new PCP and gave them the low-down - I have an untreated brain AVM and need to start the process to get treated.
I was sent to Neurosurgery at Walter Reed Army Medical Center first. The Neurosurgeon there said "you've got 3 options: 1) embollization 2) gamma knife or 3) open surgery". Immediately, I ruled out #3 because I didn't want anyone cutting a hole in my head. I was referred to a doctor (Dr. Noonan) at Bethesda National Naval Medical Center to talk about embollization. I think he gave me a 60-75% success rate (successful blocking) and if it wasn't 100% blocked with the first treatment, I'd still be at risk for rupture, and I thought, not good enough, let me review all my options first before I make a decision. I was also referred to the University of Maryland Medical Center to talk to Dr. Simard about the GK. He gave me a 90-100% success rate but the radiologist who partners with the neurosurgeon during the GK said, no, he'd give it maybe 60% at best. Well, that was no good either and I didn't much like the idea of that metal frame on my head for a whole day. Plus, the GK was a one-time deal, I was told. If GK didn't block it off 100% the first time, there was no second chance - I'd have to choose another method to finish it off - and they wouldn't know if it worked for 1-2 years. So I said I wanted to see the doctor at Bethesda for embollization. I figured I could just start there first. But he was gone, moved on, to where I don't know. So I saw the doctor that replaced him at Bethesda, an Army doctor, Dr. Armonda.
Dr. Armonda said that because my AVM was so close to the surface of the brain (it was touching the dura) and it was small, open surgery would be best. He would try embollization first, but he didn't think it would work - something to do with the blood vessels leading to the AVM. Well, this was most definitely what I DIDN'T want to hear but I decided to do the surgery anyway, simply because with embollization and GK, I would still be at risk of rupture for some time and this had weighed heavily on my mind for long enough. Plus, I figured I could handle the surgery better NOW at this age whereas if I did one of the other methods and had a rupture later on or chose surgery later on, maybe my body wouldn't handle it as well. With open surgery, it's gone in one shot, no more worries and I was young and healthy. I could handle it.
Surgery was in October 2004 and it went well. True to his word, Dr. Armonda did an exploratory angiogram to see if embollization would work (up 'til now, he'd only had my previous angio films to look at, an angio HE didn't do, but because the angio was recent, the films were still good). He did the angiogram the day before I was scheduled for surgery. He said if he can do the embollization successfully, then he wouldn't need to do the open surgery. "prepare for the worst case scenario, though, just in case we can't embollize". Plus, he had to try embollization anyway, in order to slow down blood flow to the AVM prior to open surgery. He couldn't embollize it at all, not even to prepare for the surgery. So I went in for surgery the next day. I think I was in there about 6 hours, but exactly how much of that time was spent doing the actual surgery, I don't know. That's how long I slept with the help of "Milk of Amnesia". He put in a titanium coated screen and bone cement to replace the bone he'd removed, and some artifical dura.
I recovered well from that surgery. The back of my head was shaved (because that's where my AVM was, cerebellar) and I came out with 27 staples. The incision site closed up fairly good but my neck was very stiff from where he'd cut through those muscles, so I had to work on that. Surgery was on Oct 10th, I was out of ICU the afternoon of the 12th and discharged from the hospital on the 14th. I was put on convalescent leave (off work) for 30 days. Because my neck was so stiff, I couldn't drive for about 2 weeks. Other than that, it was as close to perfect as could possibly be.
But that's not the end of my story. In November 2004, just one month after the surgery, I started having severe headaches and nausea. 1,000mg of Tylenol couldn't kill the pain. Fluid had been building up on the back of my head. My surgery and recovery had been darn near textbook perfect up to this point. I tried to get help with the pain but nothing worked. One doctor tried to tell me I was having migraines. When I finally got to see Dr. Armonda, he didn't seem TOO concerned about the fluid because at the time I saw him, it wasn't real bad. He wasn't happy about it but he wasn't overly concerned. He was fairly concerned, I'll say. He ordered a CT scan, with and without contrast, and some blood tests, anyway. A follow-up with him 6 days later showed that the fluid was going down so I didn't think too much of it.
December 16th, 2004, I felt fluid seeping out the back of my head. I would swipe my hand across the back of my head, just to feel the swelling to see if it was less or more, and my hand would come away with a small amount of fluid on it. So I went to the ER at Bethesda. Eventually, I saw two neurosurgery residents who in turn, spoke with the chief resident who helped with my original surgery. I was going to be admitted to the hospital to get the fluid off my brain. Although the fluid level had been going down in November when I last saw Dr. A, it had come back with a vengeance and was now seeping out, trying to tear an opening in my skin.
December 17th, surgery by Dr. Rosenbaum at Bethesda (because Dr. Armonda was out of state). The Cerebral Spinal Fluid (CSF) in my head was infected. It's called meningitis, also sometimes referred to as spinal meningitis. No one knows how it happened but the results were the hardware they put in my head the first time had somehow gotten infected and it all needed to come out. Dr. Rosenbaum cleaned out the fluid and removed all the hardware except for one small piece of artifical dura. I suppose it needed to be in there or else he would have removed it too. I had a tube in my lower back to drain the CSF. The nurses (I was still in ICU at this point) had to drain a certain amount of fluid every hour. A pocket had developed in my head/neck area that kept collecting the fluid and holding it. The idea was to drain off as much CSF as possible so that the pocket could close up and heal properly.
Again, I bounced back and was within hours of being moved from ICU to a regular ward when Dr. Rosenbaum came in my room and said he needed to go back in my head. Apparently, my CSF was still showing infection, wasn't draining on it's own the way it should, and that one small piece of hardware he left in there must be the culprit. It must be infected and he needed to remove it. Dr. Danko, an infectious disease specialist who works part time at Bethesda and part time at the NIH (National Institutes of Health), started putting me through a variety of antibiotic combinations, trying to find something that would kill the infection. She finally found the right combo. December 22nd, only 5 days after the last surgery, I'm back under the knife to get that one small remaining piece of artifical dura out. I didn't bounce back as quickly this time. I think my body was just tired and worn out from the surgery 5 days prior. Anyway, Dr. R said he would remove that one small piece of artifical dura and replace it with (I'm pretty sure he said...) some type of tissue from a pig. I want to say it's the membrane that surrounds a pig's heart. And I'm pretty sure they didn't take it straight from a pig. At least I hope not. I hope it was grown and cultured in a lab somewhere. Anyway... I was on morphine this time so the following 4-5 days are pretty blurry and weird. My sister came to the hospital and sat by my bed, pushing my morphine button every 20 minutes to keep the pain at bay. The nurses had told her that I needed to keep the morphine in my system because if I didn't, then when a wave of pain hit me, I'd have to play catch-up and try to kill the pain AFTER it'd already started.
December 29th, I was discharged. They put a PICC (periphally inserted central catheter) in my right arm so I could run IV bags at home - I needed to be on antibiotics by IV for 4 weeks. I run two bags of antibiotics by IV, twice a day. I have one week left of this regimine. Having a PICC is like having a semi-permanent IV needle, except it's not a needle. The part that's inside my body is like the same thin plastic wire they use for an angiogram (they put it in the exact same way), then there's a small plastic clamp where the line enters my body. Some are sewn into place with one or two stitches but mine isn't. I've had something like that before and it's better than a regular IV needle but this time, it was not sewn in. It's got what they call a Statlock, which is a piece of plastic/foam material that sticks to my arm under the plastic clamp and secures the plastic clamp in place. There's a connector on the end of the PICC line and I connect my IV bags to that. There's a company here in the DC area that first showed me how to do all of this (preparing the IV bags and hooking myself up), and they deliver my meds weekly. They also draw about 5 tubes of blood twice a week. I guess the normal is having blood drawn once a week, but Dr. Danko requested twice a week because she needed to keep a close watch on the infection, to see if it was coming back.
I followed up with Dr. Rosenbaum on January 11, and he said everything looks good. Incision looks good and closed up nicely, no fluid build-up or swelling noted, and I'm moving around on my own. I have another appointment with him on the 26th, prior to going back to work. I'll also see Dr. Danko on the 19th for a follow-up.
Maybe I sound like a wimp because I didn't want a metal frame bolted to my head all day, or maybe not. In some ways, I AM a wimp. Put me to sleep and you can do whatever you want - I'll deal with it when I wake up - but I can't deal with that stuff while I'm awake and aware of what's going on. I think I'm a fairly strong and determined person because I bounced back quickly and pretty easily from the open surgery - I just don't want to see or know what's going on while you're doing it. Everyone is different. Dr. Armonda seemed quite pleased with my recovery progress. Most people thought it was astounding that I'd had brain surgery and was almost completely normal in less than 2 months. The only residual problem at that time was I still had some stiffness in my neck but that was just going to take time.
I'm a pig-headed (literally) and determined kind of gal. When I was in ICU, I had wires and tubes all over my body and I knew the only way I could get rid of that stuff was to get out of ICU, and the only way I could get out of ICU was to prove I could eat solid foods and keep it down, and to use the bathroom on my own. I was determined to do it, simply because I wanted to be rid of all those wires and tubes, and I did it. Once I was out of ICU, I kept pushing, trying to recover and I did that, except for the stiffness in my neck. That took time.
How did the hardware become infected? No one knows. But maybe the hardware wasn't the culprit! Since the fluid didn't start building up right after surgery, it's quite possible the hardware wasn't infected when it was initially put in. I DID have SOME fluid but it was a small amount, nothing to worry about. Maybe it was the hardware, maybe it wasn't but for now, I'll assume it wasn't until someone can prove otherwise. So how? I personally know that I wasn't around any people who could have infected me because I was basically home-bound and on my own during that following month. But I DO have to say that the incision from that first surgery didn't heal up as prettily as the incision from the 2nd and 3rd surgery. I had lots of scabbing (which, to me, indicate openings in the skin) for 2-3 weeks. I suppose it's possible infection creeped in through a tiny opening but from what, I don't know. I'm quite sure it wasn't a person, so maybe it was something in the air. By the way, I had staples in the first surgery, and stitches in the 2nd and 3rd surgery but I don't know if that's significant.
Do I recommend artifical hardware? Well, I don't have any in my head now except for the (I think) donated pig tissue and my head appears to be quite normal. It actually looks pretty good considering the 3 surgeries I've had. Again, my AVM was on the back of my head so eventually my hair will grow and cover any scars and deformities, if there are any. But right now, with my short boyish haircut, the incision site looks pretty darn good and my head has a normal shape. Ask your doctor if he/she thinks you need hardware. I thought I needed it because I didn't want any soft spots on the back of my head. God created me with a hard bone skull to protect my brain and I thought it should remain protected in some way. I wanted some hardware in there, darn it, although at first, my doctor said I wouldn't need it. But, the area they removed the bone from has an inch or two of thick muscle covering the brain and he said that would protect my brain, so I think I'm fairly well protected. Not as good as with bone or artificial hardware but still pretty good.
Did I have a bad doctor? Did he do something wrong? No. Everything was as close to perfect as it could possibly be during and after that first surgery. Dr. Armonda is one of the best in Neurosurgery (in the top 5 nationally, I was told) and my recovery during the 2 weeks following his surgery can attest to that. Plus, it was done at Bethesda NNMC, one of the top hospitals in the country. If the President of the U.S. and all the local congressmen/women get treated at Bethesda, it HAS to be good! And I think Dr. Rosenbaum did a heck of a job fixing my messed up head. I'm alive and well (except for my shoulders and neck!) and that says a lot.
Do I recommend open surgery? That's really up to you and your doctor. If your doctor says he can easily treat it with open surgery, you have to ask yourself, can I physically and mentally handle that? This is no minor surgery. Mine was close to the surface which meant they didn't have to go rooting around in my brain to find it. Some brain AVM's can't be treated with surgery simply because they're too deep in the brain. Embollization wasn't going to fix it and I didn't want to sit around for who-knows-how-long wondering if the GK worked. Plus, I was told that GK was a one-time deal. If it didn't work the first time, I'd have to be treated with a different method. So I thought, let's just skip to the end and do the open surgery. Be done with it once and for all. I'm young and healthy, my body can handle it. I'm tired of worrying about this thing, wondering if I'll go to sleep some night and not wake up. I even started carrying around cards with me, in my wallet, to let people know I had this condition. If I complained of a sudden, severe headache and/or passed out, all necessary information was on that card: what I had (brain AVM), where it was located in my head, my doctor's name, the hospital I wanted to be taken to for treatment (Bethesda), my doctor's phone numbers, my Next of Kin info, and my employer's info. Everything I wanted them to know about me and my AVM, in the event I couldn't tell them myself.
If you have open surgery, will you get meningitis? No way to answer that question. I'd say mine was a freak accident. I would recommend, though, that if you have open surgery and you have a lot of scabs on the incision, ask your doctor about possible infection creeping in. Again, I don't know if that's what caused my infection - it's just an idea. But I DO know that when I had the stitches removed after the 3rd surgery, the technician wiped the area down real good with alcohol pads then covered the whole area with sterile pads and tape. He said "to protect the area because you now have small openings there". Keep an eye out for fluid build up and ask your doctor about it. Keep close tabs on it. Keep a diary of everything no matter how small or insignificant it seems, every day following your surgery for at least 2 months or until you feel normal again.
What about the ringing in my ear? Some of the doctors I've seen think the ringing could be related to the AVM, some don't think so. I still have it but I'll give it up to 1 year to go away (time for everything in my head to heal).
Today, January 17, 2005, I'm doing pretty good. Having this PICC in my arm is wearing on me mentally. I feel like an invalid and that's depressing. My neck is still fairly stiff and very sore (muscle soreness). I'm trying to stretch the muscles but they're so hard and knotted up that sometimes, it just pulls on my head and the pain is unbearable. I never used to be the kind of person to run for the aspirin with every little headache but now, I count the hours until I can take more pain meds. But they never really take the pain away. They dull the pain somewhat, to the point where I can get through the day. The pain isn't starting in the surgery area - it's the muscles pulling on the surgery area, because they're so stiff and knotted. If I press against the surgery area, yes, I feel a dull pain so I just don't press on it. A neurologist (neurology, different field than neurosurgery) wanted to put me on an anti-depressant. I haven't filled the prescription yet. There are other things which add to my depressed mood but nothing I'll elaborate on (waking up with tubes in my throat, feeling the tubes pulled out of my throat, my face being swollen and eyes swelled shut from where I was face down for 24 hours on a Stryker board, the knotted up muscles in my neck and not being able to take any muscle relaxers, the feeling of helplessness as I lay there in the hospital, knowing that my sister cut Christmas with her husband and son short so that she could be at my bedside, knowing that although I have numerous co-workers and friends in this area NO ONE could find the time to go by my house once a day to feed and take care of my cat, and I could on and on). I live alone.
I have 4 sisters, all of them 5 hours away in West Virginia. One of them came to the hospital and sat by my bedside for 7 of the 12 days I was there. For a few days, she rarely slept because she wanted to make sure I got my morphine drip every 20 minutes. She did that until I coherent enough to push the button myself. She hadn't slept in 2 or 3 days and the nurses kept telling her "you can't keep going on like this; she needs to start doing it herself" (talking about me). I'm not sure I actually needed the morphine - perhaps there was another painkiller they could've used that would have been as effective. I don't know. Another sister came 2 days before I left the hospital, to take over from the first sister. She drove me home and helped with my IV's. She stayed for 2 weeks then the first sister came back. She just left 3 days ago. I don't think I would have made it without their help. Maybe I would have, because I'm a pig-headed and determined kind of gal, but it sure was nice having someone here to help.
Those first 2 weeks at home seemed to be the worse. My sister made sure my IV's were done properly, she did the grocery shopping, laundry, house cleaning, helped me with my showers, etc. Let me tell you, it was embarassing to have to stand in the shower while someone hosed me down and scrubbed my body like I was an animal, simply because I was too light-headed from the drugs and I couldn't move my head enough to see what I was doing. The painkiller they sent me home with (Percocet) made me light-headed and dizzy. I could barely walk from the bedroom to the living room without nearly falling over. I stopped taking it after about a week and just went with regular Tylenol (the doctor said it was OK). Two 325mg tablets every 4 hours is what I take. The light-headed and dizziness left with the Percocet. By the time the first sister showed up to stand watch again (Jan 17) I was pretty much doing everything on my own again - driving, moving about the house, showering, dressing. My mother came over and took my cat home with her, so I wouldn't have to worry about him if I had to go back in the hospital on short notice.
My recovery might have gone a little quicker if I hadn't caught some kind "bug" my first week home. It started the day after I went to the hospital to have my stitches taken out (Note: take anti-bacterial lotion or gel with you when you go to the hospital for follow-ups! And use it often! Remember, there are lots of sick people at hospitals.). It started with nausea and by that night, I was vomiting. The next morning, more vomiting so back to the ER I go. The doctor said I'd caught a "bug". After what I'd been through, he didn't even page the on-call neurosurgeon to let them know I was even there AND in the ER with nausea! It was a civilian doctor at Bethesda. I think if it had been a military doctor, she/he would have paged every single neurosurgeon until she/he talked to someone. Well, that little "bug" cleared up 2 days later and I was able to keep food down once again. Other than that little set-back, my recovery has been fairly quick except for these tight, knotted up muscles in my shoulders and neck.
I can't turn my head from side to side or up and down as much as I used to, but it'll get there eventually. I have a numbness in my skin from head to toe but Dr. Rosenbaum (neurosurgery) and the neurologist said with a surgery like this, it happens and will eventually go away. The nerves just need time to heal. Dr. Rosenbaum put a referral in the system for Physical Therapy, so they can show me how to safely stretch my neck muscles without damaging the work he did. He said I can get massages but the massage therapist has to stay away from my surgery area and most of my neck - shoulders and back are OK. Any little bit helps. I use Aspercreme on my shoulders only, when I start getting sharp pains in the shoulders from the knotted up muscles. I've also used Icy Hot a few times but it smells. I don't rub or massage the muscles in my neck or head, and I don't put any cremes on that area, just because I'm afraid of doing something wrong.
My worst fear right now is having the infection come back. The next month or so will tell. If the infection comes back, it'll mean another surgery and I think I've had enough for one lifetime. I'm young and still healthy so I think I could physically do it, but mentally, I just don't want to go through all that again. Surgery #1 - came out of that like a champ and FEELing like a champ, Surgery #2 - came out feeling like a 3rd place champ but still a champ, Surgery #3 - I was in last place. That's just how I feel. People still seem shocked that I look as good as I do after 3 brain surgeries in the last 3 months. "You may not feel good, but you certainly look VERY good, after what you've just been through." Thanks, now give me some really good pain killers, a muscle relaxer, or else massage my shoulders for me.
I'll post a follow-up in a few months.
Update: 8 October 2010
My first surgery was in Oct '04. Second & third surgeries were in Dec '04. So, it's been 6 years. In fact, Oct 5th was the 6-year mark.
I'm proud to say, I'm just about as normal as I was before the surgery. The ringing in my ear, which I still have, was determined to be unrelated to the AVM... at least, no one has been able to connect it to the AVM. I still get a little dizzy when I lay down quickly, falling straight back - like doing sit-ups but with letting my head go all the way to the floor vs. holding it slightly up. The headaches are mostly gone. My headaches were the result of muscle being removed from the back of my head, leaving only a thin layer.
I had a pretty good indention there. The muscles would get over-worked, stressed, and cause severe headaches. That muscle now seems to be stronger, building up. The indention isn't as deep as it used to be and, most importantly, I don't get the headaches like I used to. Sometimes, if it seems to be getting real tense, I just get a massage & that usually keeps it at bay. Icy Hot is my best friend. In the beginning, to get the muscles to relax, I was getting acupuncture with electrical stimulus. For me, that was a miracle cure. This treatment was specifically to help the muscles in my back & neck relax so they wouldn't be pulling on that tiny little muscle left on the back of my head, causing me headaches. But now that that tiny little muscle is getting stronger, there's not as much pain. I know what can cause the most problems & I do my best to avoid those situations.
So, I'm back to dancing (country, couples dancing, line dancing), just like my old self. Well... I was actually dancing about 4 months after my last surgery but I was a bit wobbly. I spin like a top now (so I'm told). I don't go on some rides at the amusement parks but, as long as it doesn't jerk my head around, I'll ride. I retired from the Air Force last year with 20 years of service (wanted to stay longer but didn't think I should push my luck). And I've recently become a volunteer with the American Red Cross for disaster relief. The disaster I lived through isn't the same as what I'll be dealing with in the ARC, but I KNOW what it's like to be at the very lowest possible point in your life and wonder if you'll ever climb out of it, wonder if your life will ever be the same. I think I have some hope and determination to share with others.
Discussion, comments, or questions: Sandra Shaffer
© Copyright 2005 Sandra
Shaffer
