This is me and my daughter, Hannah (4)... the light of my life. Thanks again to all my great doctors who made sure that both Hannah and I were healthy throughout my pregnancy and also her birth. We love you!
My name is Laura Babjak and I am 23 years old. I suffered from multiple AVMs of the brain, but I am happy to say, I am feeling fine thanks to the fine doctors at Beth Israel Medical Center in NYC... especially Dr. B. I thank you... for my life.
They're Only Stress Headaches...
1 June 1998
In January of 1997, I started to get bad headaches on the right side of my head. I went to my primary care doctor,Dr.Levitt, and he felt that it was probably just stress (famouslast words), but that he wanted me to go for a CT scan, just incase. My boyfriend was home on winter break, so he took me. I was so nervous. I have never been really sick in my entire life, and to now, at that time I was 20 years old, have to have a CT scan...
The results came back and they were negative.Everyone was making the joke, "We all knew Laura had nothing up there!" I was happy that the results were negative, but now I had to figure out what these headaches were caused by. I changed my diet, no caffeine...at all. That killed me, but I figured if it would help, it would be worth it in the end. The headaches did notget any better. As a matter of fact, they got worse...much worse.It started interfering with my life now, and that bothered me.
I turned 21 on October 24th. On October 26th, my grandfather passed away of lung cancer. I was completelydevastated. I noticed that the headaches were getting more frequentnow, so I figured that it was just stress. On Christmas Eve, my boy friend Adam proposed. I was so happy, but then again, theheadaches got even worse.
I went back to Dr. Levitt in February and he decided it would probably be in my best interest to go see aneurologist. So, I went to Dr. Misra who in turn sent me for an MRI. I went for the MRI in March. About 3 days after the MRI,Dr.Misra called and said he needed to see me right away. He explained that they found something on the films which is calledarteriovenous malformation or an AVM. I could not believe thatthere was actually something wrong and it wasn't just "stress". In a way I was relieved. Then Dr.Misra started to explain what my options are concerning treatment. That's when I started to worry.He told me to go see Dr.Chalif, a neurosurgeon.
The following week, I went to go see thisneurosurgeon. He looked at my MRI films and he felt that thisneeded to be taken care of right away and that I should go into Manhattan and see Dr.Berenstein, who is an endovascular surgeon.Now, I really got scared.
Dr. Berenstein saw me that same afternoon. He explained that I would have to have an angiogram done in order forhim to pin point exactly what would have to be done. I had theangiogram done on April 14th. I was really nervous about the wholething. The good part about the angiogram was that I really didn'tfeel anything. They put me under heavy sedation. The hardest partwas the 6 hour wait lying on my back after the procedure was donewith. I went back to Beth Israel Medical Center and met with Dr. Berenstein. a week later. He explained that the AVM is on theright side of my brain in the "posterior parietal lobe" (Whateverthat means...). I am scheduled for an embolization on June 10th.Dr.Berenstein has already informed me of the risks, and he alsotold me that I am probably going to have to have more than oneembolization to correct the problem. I am going to be in thehospital for a while afterwards, and since the computer I use is at my job, I won't be able to continue my story until the end of themonth. I promise to keep everybody informed, as long as you say a little prayer for me.
To be continued.
Update 17 June 98
Well, surgery was postponed until Thursday, June11. They brought me down to the operating room at 8:30 and 9 hourslater, my ordeal was finally over...or so I thought. Unfortunately,while they were doing another angiogram after the procedure, theyfound an AVM on the left side of my head and in the back. I have to go back to the doctor in 3 weeks and have a meeting with him andthen 3 weeks later to do the embolization on the left side. Thegood part was that it only took me 2 days to recuperate in thehospital, so they discharged me Saturday afternoon. I guess, my continuation will go on for a little more...
To be continued.
Update 27 Jul 1998
Well, I went back to my neurosurgeon last week and I guess I am a little disappointed. I know the doctors told me that I had 2 more AVMs, but I guess I was hoping they were wrong andwhen I got to the hospital they would tell me that they made amistake and now I am okay...well, that definitely did not happen.The surgeon's were able to close off 80% of the AVM on the rightside, so hopefully that will be enough. They still have to embolize the left side and most likely the one in the back, but that, theytell me could get a little complicated. My next embolization is scheduled for February 8th of next year. Dr. Berenstein said that I can wait a little bit for the next surgery since I am not sufferingfrom anything...yet. I just wish this nightmare would end, so that I could wake up and start living my life again.
To be continued.
Update 18 Nov 1998
About 2 months ago my boyfriend and I got into a pretty serious car accident and I screwed up my neck pretty bad.Lucky me, the headaches started coming back right after theaccident. I was out on disability for 3 weeks and I was put throughsome difficult physical therapy. I cannot tell you how many tests I had to go through again due to the AVMs. The doctor's were worriedthat I might have a bleed. Fortunately, there was no massive bleed.The doctor informed me that since the headaches are back, it probably means that the accident may have caused some damage to the AVM, but as long as I wasn't having any really seriouscomplications, that they would wait until the scheduled surgery in February. I really wish this could be done sooner. I feel like thisnightmare is never going to end!
To be continued.
Update 3 Dec 1998
My headaches started up again pretty bad over the Thanksgivingholiday. I called my neurologist, Dr. Misra and explained thesituation to him. He thought it might have been a small bleed, so he sent me for an MRI and MRA. He called me today with the results.Fortunately, there is no bleed. Unfortunately, there is a newfeeder. The doctors really don't have an explanation as to why thisnew feeder "sprouted", but my feeling towards it is that the bloodwanted a new path to flow through, so it decided to make a new one.Lucky me! I called Dr. Berenstein and his assistant explained thatsince he is going to be away for pretty much the rest of the month,there really isn't much they can do until the next embolization in February. If they are going to do an embolization this time.Apparently, the new feeder is working it's way from the outside to the inside. I really don't understand the medical mumbo jumbo. All I understand is that now I have to put up with theheadaches...again. I'd appreciate it if anyone has gone through newfeeders popping up. I guess I just figured that once they closedthe vessels off, that would be the end of it... Guess I waswrong.
To be continued.
Update 14 Feb 99
I had a very extensive embolization done on Monday,February 8th, and the surgeons were able to close off 98% of the AVM on both my left and right side. There is still one in the back,but the doctor's tell me that due to it's location, waiting is my best option. Which at this point is fine by me!!
I just want to thank everyone in this great supportgroup who has been there for me since this whole thing started. I am now going back to school to get my desktop publishing degree andfind a really great job so that I can start making my dreams cometrue...
Update 17 Oct 1999
As of today, I can finally say things are GOOD. No more headaches, no more testing, no more hospitals. (For the rest of this year anyway) I am happy to say I finished my education and I am now officially a Graphic Designer. I landed a pretty cool job at a sign company. It's not the career yet, but it's a start. I just wanted to thank everyone from the bottom of my heart. I reallydon't know how I would've coped without knowing that someone would be there on the other end of the "mouse". You guys are thebest....
I will always be here for anyone who needs help,advice or even just a friend.
Update 28 Jul 2000
Well, as of today, I have had NO...repeat no further problems. Things couldn't be better. Some other greatnews...I'm getting married to an amazing man...his name is Joe and I actually met him online! (It actually works) Anyway, he is so supportive of me and he helps me in anyway he possibly can. The bigday is September 23rd of this year, so please...pray for norain!!!! Thank you again for all of your help and encouragementthroughout the past 2 years. Without you guys...I don't know where I would be.
Update 1 Mar 2001
Let's see..where to begin. First off, I am now Laura Santosus. I got married on September 23, 2000 (It rained!)Anyway, everything has been going fine and my husband and I werestarting to talk about children. We decided it would be a wisedecision to talk to my neurosurgeons before going ahead withanything. I went back to Beth Israel Hospital yesterday and had my consultation with Dr. Berenstein and unfortunately, there is stillremnants of the dural AVM. I was SO upset.
I am now going back into the hospital on March20th, where they are going to do an angiogram with the intent to treat with embolization. Definitely was not the answer I waslooking for. So I guess, my horror story lives on for a few morechapters...
Update 20 July 2001
Well, it's July 19th and I just found out that I ampregnant! I am extremely nervous about the whole thing, especiallybecause of my AVM. Any advice would be helpful. I am figuring that I am going to have to have a Caesarean section instead of naturaldelivery, but as long as we get a healthy baby in the end, that'sall that matters. Please keep me in your prayers.
Update: 29 Mar 2002
On 3/15/2002, my daughter, Hannah Noelle was born at 5:56 am. She weighed 8 lbs., 1 oz. and was 21 inches long. I gave birth to her naturally with NO complications with my AVM!!!!!!Thanks to everyone for their support.
Update: 16 July 2004
As of today, things are OK. I am having headachesagain every once and awhile, but I hoping it's just because of stress. I am, unfortunately going through a divorce and learninghow to cope with being a single mom, all the while worrying that my AVM is back and going to get bad again. Any words of wisdom and or advice would be greatly appreciated.
Update: 23 May 2006
So, it's been a couple of years since my divorce, since my headaches...and now, here we are in Spring of 2006 and things couldn't be better. I haven't had ANY headaches, other than normal ones here and there. Hannah is getting so big, she is 4 now. I can't believe how fast time has gone by. I have also met the most amazing man, and we are moving in together this summer. He is the most caring, loving, and special man, not only to me, but also to my daughter. We are actually going on vacation in September to Las Vegas...never know, does anyone hear wedding bells???
I will probably go back to see Dr. Berenstein over the next year, just to make sure everything is OK. I have gotten so many encouraging emails from you all, and a lot of people looking for advice. This site has given me so much hope and encouragement...I cannot thank you all enough. Love to you all...
Update 6 April 2008
Well, I have been having some headaches recently, nothing horrible, but I have been having A LOT of sinus type infections. Nothing seemed to clear it up. I went for an MRI last week, and low and behold it's another AVM in my sagittal sinus area. i have to go to the neuro-opthamologist tomorrow to see how much pressure is building behind my eyes. I go back to my surgeon on 4/15 to see how he wants to treat this. I am just so incredibly worried. I had my last embolizations back before my daughter was born. Now, she is 6 years old and I am so scared that something will happen during surgery and I won't be able to provide for her anymore. Guess I am just feeling sorry for myself. I am just so tired of these things coming back. Thanks for listening...
Update 5 June 2008
Well, I had my angiogram yesterday after weeks of insurance problems and cancellations with the doctor. The most unbelievable news, even Dr. Setton was shocked. My AVMs have disappeared!!! Dr. Setton called me an atomical miracle. He said that had he not actually done my first embolizations 10 years ago, looking at my brain, he would never ever know that I even had the AVMs!!! Now I know that the headaches I have been having must just be migraines that my neurologist can treat with meds.
Thanks to this website and to all the people who have been praying for me and my family....my dream has finally come true. I NO LONGER HAVE TO WORRY ABOUT THE AVMs!!!!!!
Discussion, comments, or questions: Laura Babjak-Santosus
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