TALK TO A
Established April 15, 1995
University of West Georgia Disclaimer
I am a thirty-seven year old female, married with an eighteen year old daughter and am guardian to a fifteen year old girl. I am currently an unemployed secretary (which has nothing to do with the AVM). Up until this episode have been extremely healthy and energetic. My hobbies include cooking, gardening, and gathering information on the internet. Will keep everyone posted regarding my progress, and thanks for all your support. It is good to know that I am not alone.
15 April 1999
After reading the stories at this website, I must say that mine is somewhat uneventful. In March of 1998, I began to experience a set of symptoms that were very unlike the usual AVM symptoms. I woke up one day with muffled hearing in my right ear. This was accompanied by a thumping sound in my ear as well as an unbalanced feeling, not exactly dizziness. I went to an ear nose and throat doctor who diagnosed me with a condition called Meniere's disease. I subsequently was seen every three months until the September visit, when I had begun experiencing an pain above my right ear. It was not severe, just annoying.
I got nowhere with the ENT I was seeing. He chalked it all up to me being an hysterical female. It was now December, 1998 and the pain was occurring daily. I decided to see another ENT, who examined me and immediately suggested an MRI to rule things out. On January 4, 1999, he called me with the results. I had an AVM in the right temporal lobe of the brain. (So much for me being an hysterical female) I immediately did some research on how to deal with this. I was lucky to live in Philadelphia, I had access to a great neurosurgeon named Robert Rosenwasser.
My doctor explained that the fact that I did not experience major neurologic symptoms made me a very lucky person. He explained that AVMs are treated in a step by step approach. January, 1999, Step one: an angiogram to pinpoint the exact location. (Not exactly a fun thing, but not that bad)
February, 1999, Step two: embolization, a procedure similar to an angiogram where a glue-like substance is injected into the feeders to slow the blood supply to the AVM. (A bit worse than the angiogram, but given the alternatives, was bearable) This procedure would then be done maybe two or three different times at 4-6 week intervals. The reason was to give the blood a chance to re-route itself after being blocked off.
March, 1999, Step three: The second embolization: Had a few complications, the groin site had a re-bleeding episode, even after laying flat for ten hours, which meant six additional hours. After getting up, I had a fainting spell, but as of this writing, two weeks later, things are almost normal. My doctor says I need a third embolization and on the basis of that, he will decide whether the AVM can be surgically removed or treated with the gamma knife, which is high dose radiation.
I guess I am lucky in the respect that I had the opportunity to be an active advocate in the treatment of this. There are days when I am scared that something will burst, and days where I am just plain tired of the whole thing, but I guess we all have our crosses to bear. If I learned anything in all this, it is that you know your body better than anyone, so if something doesn't feel right, just keep investigating until you get to the bottom of it. In my case, doing that probably saved my life!
Update 26 May 1999
Had another embolization on May 19, 1999, good news. They reduced the size of the AVM a great deal. My neurosurgeon thinks he can treat it with radiation as opposed to surgery.
Still got a few challenges ahead, but am grateful for all your support. Will keep everyone updated.
Update 21 Jun 1999
I was approved for Gamma Knife Surgery and it is scheduled for July 6, 1999. I am really happy that I didn't need surgery, but the two to four year wait probably won't be a picnic. I just keep plugging away and continuing to get support and understanding from all of you. This bunch of people have helped me keep my sanity through all this. Will let you all know how it goes. I am really nervous, but what else is new.
Update 9 Jul 1999
Well, guys, the big day is here. I arrived at the hospital at 6:30a.m. After all the pre-registration I was taken to the interventional neuro-radiology suite. An IV was started, and I was taken into the room to have the frame secured to my head. I was sedated, and didn't feel anything. The next thing I knew, I woke up and the frame was attached and the a-gram was complete. Then I was put into the MRI machine, along with the frame. After that I was taken to a room to wait until the treatment plan was devised.
After lying there for about 2 and 1/2 hours, I was taken to the gamma knife suite. I was placed on a table and inserted inside a huge helmet like structure, similar to a huge hair dryer. You are hooked up in there and coordinates are plotted for the radiation treatment. When that is finished, the entire table moves and you are then inserted into a huge concrete type cylinder. This is where actual radiation is given. I was taken out and inserted in this five different times at different levels. It takes about an hour. There is no pain or noise or anything. All you can hear is the soft music playing. (Not so bad) When it is over, the frame is taken off. (This hurts a bit) and you are bandaged over the pin sites. I went to my room, continued to lay flat because of the A-gram. I stayed in the hospital overnight and was discharged the next day.
It is now three days later and except for a bit of soreness at the pin sites and a bit of a fuzzy headed feeling, I am okay. What I have to do now is wait. In six months, I will get an MRI scan to see what is happening. I consider myself very lucky to have been able to go this route and thank you all for your prayers and good wishes.
Please feel free to e-mail me with any comments or questions or anything. You guys have been soooo good to me, and I appreciate your thoughtfulness.
Update 13 Jan 2000
Just wanted to let you all know that six months have passed very quickly and at the end of this month, I am scheduled for my first post-gamma knife follow up. I am a little nervous, because I reallly don't want to have to undergo anything right now. Please keep me in your thoughts and prayers. I am not expecting any positive changes because the doctor said at least 18 months, but I hope there are no negative changes either. Status Quo would be fine. Will let you know how it all turns out!
Update 4 Feb 2000
Just wanted to let you all know that I went back for my 6 month post Gamma knife check-up and the news was good. My AVM is smaller, the neurosurgeon thinks this is due to the embolizations, he feels it is too soon for the radiosurgery to be kicking in, but no matter what the reason, the AVM is smaller and that is good news. I was told that the AVM is still there and not to do anything that might upset it (i.e. Heavy Lifting, not raising cranial pressure, etc) and that suits me just fine. I have to go back in June for the one year follow-up. If anyone wants to e-mail me for any reason, (for advice, support or just to talk) please feel free. Thanks for all your support and good wishes.
Update 24 Apr 2000
Just wanted to let you all know that I have a new addition to my family (and in a way our family) I just got a puppy. He is a two lb. Yorkshire terrier and his name is GAMMA. I named him that in honor of my gamma knife radiosurgery nine months ago and I figure it will give me a good reason to remember it. Well, that is all for now. Hope all is well with you guys.
Update 15 Jul 2000
Just returned from my one-year post Gamma Knife check up. The report was good. The AVM is starting to develop scarring (which is a goog thing), the rest of the drill is the same. . . common sense with regard to lifting and/or increasing cranial pressure, another MRI/MRA in six months and wait. Hey I can deal with that. Just again want to thank everyone for their support and good wishes.
Update 25 Sep 2000
This Friday, September 29, I will be going to Rome to attend the canonization of Mother Katherine Drexel of Philadelphia. She will be canonized a Saint and is from my home town. I will pray for all of our "family's" intentions there. I was a little leery about flying to a foreign country, but my neurosurgeon assures me that all will be well and I trust him, so off I am going. The only precautions he made me follow are to carry my medical records with me "just in case".
Update 2 Feb 2001
Just wanted to let you all know that I had my 18 month post Gamma Knife check-up. Dr. Rosenwasser says that the AVM has gotten a little smaller, but not as small as he had hoped at this time. He also said that it is nothing to get worried about yet, since we are talking about a large AVM and it is only 18 months. That is a great report for me and it means I am off the hook for at least six more months. The medical drill is the same, keep doing what I am doing!!! Hope all is well with all of you.
Update 14 Jul 2001
I just got back from the neursogurgeon. Two years post Gamma Knife and I got a good report. Dr. Rosenwasser definitely sees some radiation shrinkage on the outer portions of the AVM, the inside however is still the same. He attributes this to the large size of the AVM and says it will take a long time. He said he will give mw another year and this time next summer, if the obliteration is not appreciable, he will consider giving me another session with the Gamma Knife. But for now, I am celebrating, my AVM is smaller, Hooray!!!!
Update 27 Jan 2002
Well, it is 3 years since the AVM roller coaster began. I have just had my 2 1/2 year check since Gamma Knife. The news is not all I had hoped for. Comparing the MRI's Dr. Rosenwasser doesn't feel that the AVM is shrinking at the rate it should and the next six months probably will see little change, so come this summer, the ride continues. I will need another MRI and angiogram and on the basis of these tests, we will discuss what to do. Nothing is being ruled out including more embolizations and/or another Gamma Knife session.
I guess things could be worse in that the last three years have been pretty good given the alternatives. But for the next six months I intend to do a lot of the things I enjoy and concentrate on getting in the best possible physical shape so I have the endurance to deal with whatever comes.
Thank you all again for your support, it truly gets me through.
Update: 11 May 2002
Well guys, I have some news to tell and it is not of the nature I have been used to. As you all know, I was scheduled to do some things this summer in regard to my AVM and the fates intervened and spoiled my time table.
Last Thursday in the gym I passed out from a bleed, I was lucky, I was with one of the trainers so he knew what to do. So I was rushed to the hospital and after stabilizing me, on Monday I got an angiogram and Tuesday an embolization. It is now Thursday and I just got home, and it feels really good.
I think that since I had been doing so well, I sort of lulled myself into a false sense of security and now I am back to being kind of scared, but I guess this too shall pass. I will keep you all updated in regard to what is going on and if anyone needs anything, please feel free to contact me.
Update: 20 Jun 2002
Just a little notice to all of you that I saw the neurosurgeon five weeks post bleed and he wants to do another embolization. The procedure is scheduled for July 8 and all things considered, I am recovering pretty well. It took me quite a few weeks to feel comfortable in my own head, but I am getting there.
I never realized how frightening a bleed could be, not so much during, but after. I feel like anything I do could trigger a relapse. The doctor told me since we don't know what causes a bleed, I am on strict orders not to bend, lift or do anything strenuous. That in itself is driving me crazy, but I know I have to do what he says, so I will, my head is in his hands.
Will keep you all posted after July 8.
Update: 29 July 2002
Had another embolization July 8. It went pretty well except that I was left with some right sided weakness. Spent the last 2 weeks in rehab hospital. Things are coming back slowly, but hey, it is getting better.
Update: 22 September 22
WELL GUYS, IT HAPPENED AGAIN. ON SEPTEMBER 8, 2002 I Had another bleed and spent two more weeks in the hospital. Had another angiogram and embolization with no ill effects - thank God. We have another scheduled for November 14, 2002. I am finally home which is greaaaaaaat. THE DOCS SAY THEY ARE COMING CLOSE TO GETTING THIS THING. I hope so. Hope all is well with all of you.
Update: 18 November 2002
I am home, and feeling great. This embo left me with a few surprises (good ones for a change) When the doc got in there, there was nothing to embolize, so I just got an A-gram. Doc says gamma knife looks like the next step. I was released on Thursday. Hope all is well with you.
Update: 27 January 2003
Here is the latest in the AVM saga. Yesterday (January 23) was my second Gamma Knife and all went well. Got home last evening. The whole thing was tolerable except they had to give me the treatment on my stomach as opposed to my back.
Today just a little sore. Hope all is well with you.
Update: 30 July 2003
Well, I am six months post gamma #2 and had my follow up, no new news to report, but after last summer that is fine with me. Hope all is well with all of you
Update: 30 January 2004
Well, here I go again. One year post second gamma knife and the waiting game continues. The neurosurgeon says, he sees some small changes, but nothing enough to pronounce me cured. I am trying to be patient, but sometimes I get frustrated, wishing the whole thing was over.
Update: 10 June 2004
I must update all of you on the latest chapter. My AVM bled again two weeks ago, just while I was working on the computer. It hit like a ton of bricks. Another trip to the ER!
Although my doc called it a small hemorrhage, in my mind, a bleed is a bleed. Spent a week in the hospital, another angioagram and a craniotomy tentatively scheduled for September. But hopefully the end is in sight. Hope all is well with you.
Update: 17 September 2004
On Wednesday of this week, I went into the hospital for what was supposed to be an embolization and craniotomy. To my surprise, I found out after the angiogram that the 2 previous Gamma Knife procedures were working and the AVM had shrunk appreciably since May. Nothing to embolize, no craniotomy and I was home Wednesday night. (lol) The roller coaster continues, Thanks again for all your prayers and support!!!!!
Update: 7 May 2006
Well guys, know I haven't updated in a while. Met with neurosurgeon today, he wants to do gamma knife again in the fall (he said to check my schedule first, which is good) but this will be three gammas for me (the third time is the charm) Family is a little bummed out, trying to cheer them up, well heck, they are always there for me. Not the greatest new, but not the worst. Keep on plugging, we'll get through (positivity). Keeping you all in my thoughts and prayers.
Update: 8 October 2006
Third gamma knife for me. Started as usual with the 6:30 a.m. hospital time. Was sedated for angiogram and head frame placement. Had to go to the bathroom at 10:30 and thanks to the angio-seal could walk. Finally got gamma treatment around 1:30. Was able to listen to one of my own CDs (small benefit)
I was done around 2:30. Frame was removed and I was bandaged and on my way by 4:00. Not bad. Doc said the inner portion of AVM was occluded from past procedures. They were working on outer portion this time. More waiting, but I'm O.K.
Update 19 January 2010
Sorry, I didn't realize how long it has been since I updated. Saw the doc in November, 2009, and he told me that next year he would do an angiogram and determine if the residual AVM needed to be surgically removed. After 3 gammas I have exhausted that option! Everything else is stable for now! Hope all is well.
Discussion, comments, or questions: Cecelia Dougherty
© Copyright 1999 Cecelia