AVM: Something Was Very Wrong

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Something Was Very Wrong

9 August 2005

I often wonder how many other people come to this site on a regular basis for support but never share there story. I know I have been one for a while. My story starts on December 12, 2003, I was 25 years old and pretty healthy. I guess I did get a lot of headaches but always chalked them up to stress or my contact lenses. I was at finishing up with my facial appointments, I own a skin care studio, and I think I remember everything up to the exact moment that my AVM hemorrhaged and then everything went blank for quite a while.

I am told that I was awake and talking but I was complaining of a severe headache and was very confused and vomiting. Somehow I must have given my parents information to my receptionist because she called them to come and get me since I couldn't drive. As soon as they arrived at my office they knew something was very wrong and they took me to the local ER.

When I got to the ER they did a CAT scan and realized that I had suffered a massive hemorrhage! They decided they couldn't handle it at that hospital and found a hospital 45 minutes away that had a bed open. They induced a coma before they transported me to the other hospital and I remained in an induced coma for 7 days. I woke up and remained in the hospital for 2 1/2 weeks before they released me without even knowing what caused the hemorrhage.

I saw a great neurologist at his office, I don't even think I knew what planet I was on when I went to his office and he immediately signed me back into the hospital for an angiogram to find out what the cause was and to allow me to recover a little longer. They found two AVM's in the Corpus Collosum. I would also like to let everyone know who needs to get an angiogram and who is scared, it is not bad. Mostly uncomfortable since you need to lay flat for 6 hours but you are on meds to take away the discomfort of the actual procedure. Anyway, they decided at the hospital I was at that surgery was not an option due to the size/location and I was referred to Columbia Presbyterian in NYC. Lu ckily I only live about an 1½ away so it made it easier.

I went to see Dr. Robert Solomon for a consultation and he agreed a craniotomy was not a good option although it was still an option, but I was a candidate for Gamma Knife. I did need to get some embolizations prior to the Gamma Knife. These were not easy for me, pain wise they were nothing but I had some complications. I got a total of three embolizations with four attempts. During one of the attempts they realized that scar tissue had blocked my femoral artery from the prior angio's and embo's and they couldn't perform the embolization, instead they had to perform a femoral bypass. This was the hardest recovery since they cut through my abdomen to do the surgery. After another one, I woke up and temporarily lost my speech. I did eventually come back fine though.

I had my Gamma Knife on June 9, 2004 nothing too bad again, I think the emotional trauma of the head frame was worse than the actual physical pain. I was lucky after initially being "shipped" from the first hospital in "grave neurological condition" I returned to a relatively normal life (normal after having an AVM) shortly after.

I am pretty tired most of the time but I am one of the luckiest people alive! I went back in March 2005 for a follow up MRI and there is still blood flowing through the AVM but it is still pretty early for a complete recovery. I live everyday with my fingers crossed for a complete recovery. This has made me a very strong person and I know I can make it through anything that comes my way!

Feel free to write for any reason support, questions, anything!

Update: 1 November 2005

I am happy to report that I have succesfully been taken off Dilantin and everything looks OK so far (fingers crossed). I was only on it as a preventative measure so I am very happy that I don't have to be on any more meds! My doctor said that is probably what was making me so tired but unfortunately even without the Dilantin I am exhausted.

I have also been having problems with my left hand going numb and loosing almost all of its strength at times. I went for an EMG and was told I have Carpal Tunnel. I think it is a little suspicious since it starting happening after my last embolization.

I am not about to have another surgery so I am opting to try something called Prolotherapy for the new "condition". If anyone has any info/experiences with this "treatment" any feedback would be appreciated.

Unfortunately the Carpal Tunnel like symptoms have had a little impact on my career since I do facials so I cut my hours back at my shop and started another part time job doing office work.

I still get migraines but I am now recording them on a calendar and they are less frequent then I thought, about 2 times a month. I hope this is normal? (sometimes it is hard to get a straight answer on what I should be experiencing at this point).

Discussion, comments, or questions: Kristen

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