My ordeal started almost 3 years ago. I had been having headaches on a daily basis and finally decided to see my doctor. He ordered a CT scan. So I go for my scan...all is going well, until they tell me to sit tight...and they left me for a few minutes. When they come back, they inform me that my doctor has also ordered an MRI, but not to worry (yeah right!). It was after my MRI that I knew something was wrong because they gave me my films and told me to go to my doctors office, that he was expecting me. Well, he told me about an aneurysm in my brain. But he also told me not to worry and that he was referring me to a neurosurgeon.
Once home, the neurosurgeon calls (that quick, but I'm still not supposed to worry)and makes an appointment for me for the following morning. So all night I am worried sick. This neurosurgeon tells me that he will be referring me to yet another neurosurgeon, but he was kind enough to explain a little about how serious my situation was. So now, I'm beyond worried, I'm terrified. I was to see the new doctor in the morning. That night I had to explain to my kids what was going on and that I would be going to the hospital soon for an operation. The worst part of all was seeing the look on my sons face when we gently explained how dangerous and complicated surgery could be, and that mommy might not be coming home right away...if at all. I feel it is best to be honest to kids. They do know more than we think they do after all...I would much rather them have the straight facts then to wonder and make their own conclusions which may not be at all accurate.
The next day, the neurosurgeon admitted me right away to the ICU unit at the hospital..but he had determined that my aneurysm had not ruptured, but he feared it may happen soon because of the location of the aneurysm and the location of my headaches. A few things were explained to me about surgery options. I had the choice of a craniotomy or a relatively new procedure called GDC coiling. I chose the coiling because it seemed much easier, less dangerous, and less invasive. All went well with the coiling. The doctor found that I in fact had two aneurysm, one was growing out of the first. So I have 6 titanium coils in my right carotid artery in my brain.
A few weeks go by and I'm getting headaches again, and what feels like small seizures. I go to the hospital and an angiogram is scheduled. They find that the coils have moved and a blood clot formed. A second GDC coiling was then scheduled, which was unsuccessful. I am told to get angiograms done every 6 months to check on it. Well, after the last one I had, I swore to never have another done. The pain I felt from it was horrible. At this point I had gotten 7 angio's done, never cried for a single one. The last one, I bawled like a baby. I felt the catheter being pulled from my brain all the way out, down to my groin. It felt as if my face was being ripped apart as it moved through my arteries.
So over a year has passed and I haven't had it checked. But now I am starting to worry about it more and more, especially after reading the posts here. I worry about the possibility of the aneurysm rupturing. So much so, that I have many bouts with insomnia. I found out a few months ago that my neurosurgeon had planned on doing another coiling attempt or a craniotomy...he never did either.
I am having headaches again on a daily basis. Most painful ones are the ones on he right side of my face near my temple. Which is where the aneurysm is located basically. At night sometimes laying in bed, I feel like an electric jolt surges through my head, my jaw stiffens and sometimes my left arm/hand goes numb, and sometimes my lips get tingly. If anyone has any information about the possible causes of this or anything they can add, I would welcome it. I can't bear the thought of having to tell my kids about another dangerous surgery. I have an appointment with my neurosurgeon in about 2 weeks, but those 2 weeks are going so slow. I know I am lucky, and I feel almost guilty for being so scared knowing how much others have gone through who've had them rupture.
Update 29 May 1999
I was scheduled to see my nuero-surgeon on May 25, 1999 to have something finally done about my anuerysm. On Saturday May 22 (I think it was) I became the luckiest person alive. I was very excited about winning a poetry contest and jokingly said to a friend "my head is killing me and my chest feels like i'm having a heart attack! But it feels so good!" I was referring to how good it felt winning the contest. All of a sudden I felt funny. The right side of my head had such a pain in it. I tried sitting down but nothing helped it. It got worse and worse until I was in tears.
The pain finally spread to the right back side of my neck and I knew what was happening. I made my husband bring me to the emergency room at the local hospital. Once at the emergency room, I muttered what I could to the triage nurse and was told to sit and wait. I was amazed! They made me sit for 6 HOURS!!! while they called in everyone and their brother who had minor scraps and belly aches. Once it was finally my turn to be seen, the doctor asked what brought me there. Being in so much pain all I could manage to say was my head. They gave me painkillers, which helped a little, took some blood and some history on me. After what seemed like forever, they did a spinal tap.
There was blood in my spinal fluid. Now they are falling over themseleves trying to get me transported to a bigger, more modern hospital. After about an hour I reach the bigger hospital. They immediately do another spinal tap to be sure of the results. (they said there may be a chance that the last doctor hit a vessel and the blood could be from that) But sure enough, there is blood in this spinal tap as well.
To make a long story short, I spent 4 days in the hospital...had 5 needles stuck in my spine, had 2 angio-grams (I say two because they couldnt get the catheterr into my right side because of vasospasms, so they had to move to the left side), a CT scan, an MRI and numerous bruises on my body because my arteries spasmed so much that they couldn't even get blood from me most of the time. And then my doctor tells me that they dont think my anuerysm has leaked.
I lost every bit of faith I had in doctors that day. My doctor even admitted to me that he "really didnt want to deal with this anuerysm again". But no one can explain why I had the typical "gunshot" headache and why I had blood in my spinal fluid (after two draws). I know in my heart what happened to me and I know the doctors know also. But why wont they fix this? I know I am lucky to not have any neurological impairments after this, but I really dont want to have to face this again. Is it because I DID have no impairments that they are not taking this seriously?
I left the hospital not even being able to lift my head off of my pillow without the aid of major painkillers, because I had a "spinal headache" Why did they even bother taking the spinal fluid from me if they werent even going to use the results from it? I feel like I was just a big joke to them. And at the expense of my family. My family is very mad at how my situation was handled. I just dont know anymore, like I said, my faith in doctors is gone.
I am now only left with the knowledge that my doctor is referring me to a headache specialist. I was told to get a second opinion...but to tell the truth, I am tired. I'm not even recovered from my hospital stay yet. I am not awake more than 2 hours at a time and I'm so tired that I have to take a nap. My head hurts and my body is sore. Not to mention the financial strain we are having from my husband missing work to be with me at the hospital. Right now, I just feel like giving up.
Update 2 Nov 1999
Well what can I say? Everytime I try to get past this anuerysm thing, it shows it's ugly face yet one more time to remind me that it's there.
Recently, I requested my medical records from my primary care physician concerning my emergency room visit and hospital stay from May of 99. They pretty much told me a bunch of things that I already knew: That I had a severe headache, That I had two bloody spinal taps and That I was sent home. But it also told me one thing that I did not know, that the neck of my anuerysm has gotten bigger. That must have been one of those things that my nuero-surgeon had told me while I was under the influence of pain killers. As a matter of fact, I remember him telling me something, although I don't know what it was, and then he finished by saying that he was going to talk to the neuro-radiologist to see if he could try to get a couple more coils in. But of course, this never happened.
I am scared knowing that this thing is growing. And I am scared to have anything done to fix it. I don't even know if I can find another nuerosurgeon that will WANT to fix it. But I am in the process of findng a new neurosurgeon for a second opinion. The only problem is, I want to find one that is not in the same "group" as the one I currently have. I have even considered going out of state, if my insurance would cover it.
I have a lot of stress in my personal life lately and at times it just all seems so overwhelming. But I do know that eventually, this will all have closure and I know that I will have a happy ending. I have made it this far and I don't plan on giving up until I get that closure AND happy ending. I will update as soon as I learn more.
Update 5 Nov 1999
Well, I did it! I found a neuro-surgeon who gives a damn. I saw him yesterday and he explained a lot of things to me. He tells me my original coiling was botched right from the get-go and that they should have taken care of it long ago. He told my story to another neuro-surgeon in Buffalo, NY (about 150 miles from me) and this guy wants to see me tomorrow for emergency surgery on this anuerysm. I also found out that I may have a second, smaller anuerysm. I am happy that it is finally going to be over....but scared that it is getting treated.
My anuerysm has appeantly doubled in size since a year ago and I have not had an angiogram in over six months, so I cannot say whether it has gotten even bigger still. I will know all tomorrow I guess. Thank god I have family and friends to help me out on such short notice. And thank god I have all of you to support me and lead me in the right directions.
I will update when I get home and let you all know about my "closure"......at last!!!
Update 24 Nov 1999
Well, after six hours and 23 stitches in my head, my surgery is done! I owe my new doctor my life and eternal thanks for listening to my symptoms, fears and for his own concerns of my health. Here are a few things I found out after my surgery:
The doctor was barely able to clip this pesky anuerysm because of how much it had grown. I am told it grew from it's original size of 10mm when it was first diagnosed to an alarming size of 20+mm.
The doctor had to kind of "reconstruct" other parts of the artery because they were so thin. So does this mean that I will potentially have more anuerysms in the future to worry about? I should hope not, but if it does happen, I am at least very confident in my doctor to keep me safe and healthy.
And lastly I was told that the coils that were placed in my anuerysm back in 2/97 would have never stayed in. He beleives that they would have fallen out into the artery because the neck had grown so large. I'm not sure what that would have meant as far as my health is concerned but I am happy to know that I won't have to worry about it now.
The first night home from the hospital My kids saw me. The whole rightside of my face was swollen and my stitches on the side of my head were very visible. My daughter was afraid of me and my son said I looked like Frankenstein. I beleive that if anyone else had said that, I would have broke down and cried. But I didn't, instead I hugged him and laughed.
This support family is trully amazing. It is such a big help in dealing with these terrible sitautions. Even if I did not receive email from other members in the family, just being able to post my story, my fears, angers and happinesses makes it so much better. Like a weight being lifted. I would not wish an anuerysm on anyone...but if it had to be, then I hope they are lucky enough to stumble upon this site as I have. Many thanks and even more hugs to everyone!
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