Some Things Are Worth Waiting For!
16 February 1999
Hi, my name is Terri. I am a 48 year old female who found out on January 14th that I have a Supraclinoid Carotid Artery aneurysm. I have gotten many email notes from people and I am very thankful for them. After about a week of feeling very sorry for myself and wondering what I did to cause my life to be turned upside down, I decided to just find out as much info as I could about aneurysms.
My symptoms started last October with a vision problem. I went to see my eye doctor and he said that I had had a migraine. I have had some form of a headache since I was little and as the catcher on our neighborhood baseball team, got a little to close to the hitter, and got hit in the head. So I know what headaches are! After a couple of months, when my vision did not improve, the Nurse Practitioner that I see suggested that I see a Neurologist. His name is Dr. Stojanov, and he is the most wonderful man in the world.
He ordered an MRI, which showed the aneurysm. Then I had an angiogram which really showed the aneurysm! I have gone through such a range of emotions. Everything from being mad at God, to worrying that if I sneezed the aneurysm would rupture. My family and friends have tried to help, but unless you are going through or have gone through this, it is difficult. There have been days when all I wanted to do was stay on my couch. I began to fear going to work, going out of my house.
This Thursday (18 February, 1999) I have an appointment with Dr. Ogilvy at Mass. General. I am scared, but I know that he is the best Neurosurgeon there is in New England. The 5 hour drive is well worth being able to see him. I am anxious for this to be over, because I want my life back.
Please keep me and anyone else that is going through this in your prayers. Thanks, Terri
Update 19 Feb 99
Yesterday I went to Boston to see Dr. Ogilvy. What an absolute sweetheart. I know now that my head is in the right hands! He seemed quite impressed with the knowledge that I had of aneurysms and procedures. He said that it makes his job a little easier. After discussing options and risks, he and I decided that the clipping surgery would be the best way to deal with my situation. Surgery is tentatively scheduled for March 17th, at Mass General. On the 10th I have to go down for a CT scan, and pre-op stuff. Then after Dr. Ogilvy goes over the results of the scan, he will either say ok to the 17th or no to the 17th. He also said that he didn't feel as though my aneurysm would be causing the visual problems that I am having with my right eye. The aneurysm is pressing against my left optic nerve. So now I have to wonder what is up with that! If anyone has any thoughts or has experienced the same symptoms, please let me know. I am having white lightening streaks ( as I call them), in the peripheral area in my right eye, lots of black streaks floating across the eye itself, squiggly things happening and every know and then, a glossy look.
I am trying to be real positive about the surgery and I really do appreciate all of the responses I have gotten even tho I am not able to reply a lot because I do not have a computer at my home. But thanks everyone, I do enjoy reading and feeling as though I am not alone.
Update 15 Mar 1999
I want to update my narrative, to 1st of all thank everyone who has e-mailed me with their prayers and support. I really could not make it through this without this support group. Last week I was interviewed on a local TV station concerning aneurysms and how I felt when I found out and how I am dealing with it. The story came out really well. The next day after the story was aired, I received a call from a woman who lives the next town over from me who is an aneurysm survivor. We chatted for hours yesterday and I look forward to meeting her when she comes to Boston for a support group meeting on March 26!
My sister and I leave tomorrow morning for Boston, and I have to be at the Mass. General at 6am Wednesday, and my surgery is scheduled for 8am.
I will write again as soon as I can, again, I want to thank everyone for their kindness.
Update 14 Apr 1999
After 23 days in the hospital, I am finally home! I had a very rough time, but Thanks to all of the prayers and best wishes, I made it through. A couple of days after the aneurysm surgery my body started shutting down. I stopped responding, I stopped breathing. I was in critical condition, on a respirator and in ICU. Then I began to recover and I was transferred to Eastern Maine Medical Center in Bangor. It was good to be home.
I have recovered quicker than even the doctors could imagine. I have a few problems to overcome. I have double vision. I have to wear a patch over one eye, which does help. One part of my throat is numb so my swallowing and speech is affected. My balance is a little off and I have a depth perception problem, but I feel so lucky to be alive.
Thank you to everyone who has emailed your prayers, best wishes and the cute cards. I am still working on getting a computer at home so I can keep in touch with this support group.
Again, thanks so much for your support.
Update 20 May 1999
Hi everyone. It has been 2 months and 3 days since my surgery. Everyday brings me hope for the future. My vision is still not the best, but the swallowing and speech are getting better. I have been having a lot of depression , some days good, some days bad. My therapist wants to put me on Zoloft to help stabilize my days.
I am so thankful for the people who have emailed me. Where I live has no support group specifically for brain aneurysms, so being able to communicate with people from the group means the world to me.
One of the very hardest things about this surgery is that I can not drive. I live alone and that is why being able to communicate with other support people is so important to me.
Thanks so much for your help with kind words.
Update 9 Sep 1999
What a summer! It has been 177 days since my aneurysm surgery. Physically I am doing so much better. I have no problems walking, talking, swallowing. My vision still isn't great, but at least it isn't double. My short term memory is just that! Short, but the biggest problem I continue to have is when I am "over stimulated." Any time I am in a place that is noisy, has horrible florescent lights, crowds, people walking by me too fast, or two or three people talking, I get a headache, the left side of my face and neck feel tingly, my eyes feel clouded over, and I feel sick to my stomach.
My Neuropsychologist seems to feel that I might be having brain seizures. I'm on Dilantin, but he feels that there may be another type of medication that is more appropriate for what is happening to me.
I still can not go back to work. I was turned down for disability ( no surprise), and next week I have an appointment with my neurologist who hopefully will put the results of all of the testing I did during August together with the reports from my Neuropsychologist and come up with a plan of treatment. My Neuropsychologist feels that the area of trouble is the left frontal lobe area. Any one else have a problem in this area.
Also, I can not believe how hot I get. When I lay down, the side I lay on gets so hot. I am up several times during the night turning my pillows because they are so hot! And I sweat so bad at night, I wake up sticky.
The doctor still wont let me drive. Can't work, can't drive! What a summer this was.
Update 13 Oct 1999
Good news and bad news. Is that how most days go!! In March I did an interview with a local TV station regarding the diagnosis of my aneurysm, the pending surgery and my plans after that. One of the important things I remember saying is that after the surgery, I wanted to start a Brain Aneurysm Support Group in this area, because when I was diagnosed, I had no idea what an aneurysm was, what to do, who to talk to. There is a brain injury group which has been very helpful, not nothing specifically to brain aneurysms. A woman who lives in the town next to mine, heard about the interview called me and wanted to help get a group started. Well, the good news is, tomorrow night is our first meeting!! I am so happy. Altho I did not have anything to do with the preparations, Gail did that, she tells me that it was my interview, my desire to have a Brain Aneurym Support Group in this area, that encouraged her to do this. Gail is a 7 year survivor of a ruptured aneurysm. We are looking forward to these meetings and being able to reach out to others in this area. We can be there for them every step of the way.
The not so good news (altho everything pales to the news about the support group!) is that I went to see a neurophyciatrist today and my seizure activity is getting worse. Next Monday I am having an EEG and hopefully with new medication I will have this under control. The doctor told me today that I will never be the same person I was before the surgery, that some of the deficits are forever, but there might be ways I can compensate. I cried for a long time. I guess acceptance is the stage of grief I have had the most trouble dealing with. I never understood until today talking to this doctor that the loss I have felt, all the little losses I feel, is like death. I have to grieve and go on. I will never be the same as I was before the surgery, but at least this gives me the chance to be a better person!
Wish us luck.
Update 23 Mar 2000
I passed the one year mark on the 17th. What a year! I am still not able to work or drive as the seizures and muscle jerks continue. No medication seems to help. As the second year begins I ask for your prayers and support. Thanks - Terri
Update 21 May 2001
I'm in my 2nd year since my aneurysm surgery. I moved from where I lived because I was so disappointed in the medical care I was given. Although my physical problems have improved, I still have the muscle twitches. Some of them so bad I bite my tongue. They are more annoying than anything. I still am having problems with well lit areas, and loud noises. I get tired very quickly and find myself resting or sleeping 14 hours daily. I have some noises like swooshing and clicking but not as often.
I was approved for social security which I am thankful for, but I more than anything want to be able to call and tell them that I am able to go back to work. I still get confused easy. I have messed up my checking account and when I had a savings account took out more money than I had in there. I get my appointment times mixed up. And I am getting so sick of saying " I don't remember". Is there any help for me. :*)
I do believe that I have gone thru the darkest times. It does feel so good to be able to email all of you again. I have missed hearing from you. I have a new email address than before. God Bless You all.
Update 16 Aug 2001 (On the 8th of August, Terri's mother, Virginia Tucker, was diagnosed with two aortic aneurysms.)
This has been a very long week. The second aneurysm that was found is somehow interfering with the blood supply to my mom's kidneys and liver. I had to come home Sunday night. I really hated to, but I had no choice. Now every time the phone rings, I feel sick to my stomach. I'm so afraid that the aneurysm in her abdomen will rupture before she is able to have surgery.
On Monday night my mom's blood pressure was finally down so "someone" decided to let her go home. She was only home for overnight and was rushed back to the hospital. I can not imagine why she was allowed to go home. But at least she will know have the surgery sooner than first planned.
I am not going to be able to go to Bangor when she has the surgery. And perhaps this is just as well. When I was there I didn't take good care of myself. I didn't eat or sleep. At least here I am forced to do what I need to do for my own recovery. I want to thank all of the family for the support I have received and for the prayers for my mom.
Update: 21 May 2002
I am so happy to tell you that I am now driving! Something I never thought was going to be possible 3 years ago when I had my brain surgery. I am off all but one of my medications, and besides the deficiets that I have now accepted, my life is so much better than my "old" life. I really reached rock bottom. I was on Prozac and Elivil and I had convinced myself that my life was the way it was going to be and that was that!
This past weekend my 36 year old brother Scotty, graduated college. He is such an inspiration to me and I decided that if he could do it, then so could I. Scotty has epilepsy and had a very rough time growing up and in school. He is now turned his life around and I am so proud of him. Now this transformation of my feelings for my future didn't come overnight. They have been 3 years in the making. I remember when I was in ICU at Mass. General after my surgery and I "came to" and Scotty was standing beside my bed. I rolled over the best I could being hooked up to so many tubes, and told him I wanted to die, that I was so tired. He told me to go back to sleep and that he would be there when I woke up. The next afternoon I came to again, and sure enough he was there holding a teddy bear for me. During these 3 years he has been my inspiration and I truly feel that he is the reason I have tried so hard to come back to wanting a life. No, it wont be my old life, it is going to be better. :)
Thank to all of the family for never giving up. And, if there is anyone who feels like giving up, please don't. There is a rainbow, and on the other side is waiting your pot of gold!!!
Update: 18 Jul 2002
Just when I think that my life after a brain aneurysm can't get any better... I'm going back to college! Many years ago ( I'm not saying how many because then I couldn't lie about my age!), I quit college after 2 years. Then after my brain aneurysm I felt as tho my chances of ever returning to school were over. I can barely remember what I eat from one meal to the next, so how could I ever go back to school!
Then I met a wonderful case manager who has given me so much hope for my future. Not long ago I began to drive again after 3 plus years. Now in August I will be going back to school to finish my degree. Maybe only at 2 classes at a time, maybe only one, but I'm gonna do it.
Even a year ago, I never would have believed that I could have ever been able to have a future. Accepting my limitations, and I have many, has been such a key to my recovery. And meeting people, like my case manager, who can ease me in the direction I really need to go, is so important.
I'm smiling as I write this. My message is to never give up. No matter how small the or slow the step. No matter how many steps backwards. Patience, something I did not have before my surgery. Patience.
I don't know what I would have ever done without this family during these past 3 and 1/2 years. I hope that my words will help someone else, like I have been helped!
Discussion, comments, or questions: Terri Chadbourne
© Copyright 1999 Terri Chadbourne
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