TALK TO A
Established April 15, 1995
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I'm 45 years old, married (second marriage) and have three daughters, two step daughters, a step son, a girl I took in as my own, and two grandsons and a granddaughter. I had a cerebral aneurysm clipped in September 1995, and just found this site a couple of months ago, as we didn't have the internet until February 2000. I have been reading the narratives, and still have not yet finished reading all of them, but thought I should try to write my own at this time. The details are a little sketchy, as it was almost five years ago, but I'll do my best to tell you of my story. I'll try not to make it too long. I think I have learned more and had more of my questions answered from this site, than any of the doctors, but I still have questions and concerns.
9 July 2000
In April 1995 I was getting terrible sharp pains in my head. I told the doctor that I wouldn't call it a headache, but sharp pains. They were only about 2 seconds long, but about every five minutes. He prescribed several different pain medications, but nothing helped. I finally just took so many, that I could at least sleep even though the pain didn't go away. I missed work for an entire week, which was very unlike me. I had been at my job for seven years, and not taken one sick day.
The doctor then sent me to a neurologist for an MRI. When the neurologist called me, he said that they didn't see anything that would be causing me this pain, but they thought they might have seen an aneurysm, so he wanted me to have a MRA. By this time, the pains were gone. On May 6, 1995, the MRA confirmed the presence of an approximately 6 mm anterior communicating artery aneurysm. So he sent me to a neurosurgeon, Dr. Thomas Lansen.
My husband and I went to Dr. Lansen, who confirmed the aneurysm, and said that he felt my "head pains" probably were from a sentinel bleed. He also said that the aneurysm was closer to 8 mm and it was at that size that they felt it should be clipped. I was told by several people, that the neurosurgeons are the "cream of the crop" and didn't really talk to the patients very much. I certainly didn't find this to be so in my case, as I made two more visits to Dr. Lansen, one with my sister present also, and he never minded going through all the explanations again.
I had suffered with headaches all my life, and just learned to deal with them. Although I could recall two episodes of having "the worst headache of my life" which Dr. Lansen said were also probably sentinel bleeds. We discussed the options, which were to just wait, or go ahead with the craniotomy. We finally decided to have the surgery done, after I asked Dr. Lansen if he were a Christian, and he held his hands up and said "do you think that I could work on people's brains with these hands without the help of Him?"
But, I had a tremendous amount of stress in my life at that time, and explained it to Dr. Lansen. We were battling the court system in regard to my youngest daughter who had decided to take complete control of her own life, and was doing whatever she pleased, which was putting her in grave danger (she was only 14.) And my two older daughters were getting ready to go off to college. I told the doctor that I needed to make sure that my youngest was safe, and the older two were off to school before I could have the surgery. He agreed saying that when a person is undergoing brain surgery, they must be in the right frame of mind to recover well. He explained to us that it would be a long recovery of a total of about nine months. He said the first three months I would feel like I was ok, but my family would think, maybe she's not ok. Then the next three months, my family would say, yes she is coming around, but I would think that I wasn't ok. Then the last three months we would all see that I was going to be ok. And he was right! So, I waited with the time bomb ticking away in my head, until all my children were as safe as I could possible think they could be. My step children were all older, and on their own.
My two older daughters went off to college in August, and my youngest daughter was placed in an acceptable residential school in September. I had my aneurysm clipped on September 12, 1995. I went into the hospital on September 11, 1995, and had an angiogram. They gave me a medication to help with the pain of the procedure, but it didn't work, they said it was not effective on me. In my opinion, the pain of the angiogram was the worst pain I had throughout the entire surgery. Of course, the angiogram confirmed the size and location of the aneurysm, and I was off to surgery the next morning.
I have to tell you that I was never even a little frightened. I was prepared for the worst, as the Dr. had explained all the possible risks of stroke, paralysis, and even death. I wrote a letter to my children and family to be read in the event of my death, but I had an amazing sense of peace. I'm sure I owe that all to the wonderful friends and family who were praying for me. A group of our friends stayed at the hospital, with my family throughout my entire surgery praying for me. I left them to go to the OR and didn't return to them until 7 1/2 hours later! And Thank God, I did not have a stroke during or after the surgery, and all had gone very well. It was just a matter of going through the recovery period now.
I was in intensive care for only two days, and then put in a regular room on the neurosurgery floor. I think part of the reason may have been, that I was extremely agitated in ICU, and they wanted me to be calmer. You see, I am a nurse, and I was a bit paranoid that they might do something wrong, as I know of so many mistakes made in hospitals! Of course, my memory of most of this is not clear, but I have gotten several accounts of what was going on from my family members. My husband says that one poor nurse that I yelled at left and got her supervisor to come in, and never returned herself! And, we certainly had our laughs when I came home, as I would dial my brother on the phone, and then say "oh, never mind, I forgot what I was calling you for!" Of course, every time I forgot what I was saying in mid sentence, we would all laugh and say "it's that brain surgery." (Which came in handy when I was better, and forgot to do something.) I did go through a serious depression, and my emotions were running high. I was concerned that I would never be the same, and be able to function at the same level again.
I was also put on Dilantin to prevent seizures. After about a month, I developed a severe itching with my entire torso being covered in a huge welt. I had a friend of mine come to my house and draw my blood, and sure enough, my Dilantin level was much too high! (Something I thought a doctor should have ordered!) The doctor told me to immediately stop the Dilantin, which I had already done, and it was off the the emergency room with me.
I was in the ER for a total of 8 hours, and nothing they did could relieve my itching. They gave me shot after shot of Benadryl, which did nothing. They also did a nasopharangeal scooping (they put a thin tube in your nose and down your throat) to make sure the allergic reaction was not affecting my breathing in any way. So, for the next two days, I cried and scratched myself till I almost bled. That was horrible! The rash lasted for about a week.
Christmas was coming, and the bills were mounting up. The doctor gave me the ok to go back to work part time. When I called my office, the doctors wife told me "it's not to our best interest to have you come back to work!" I couldn't believe my ears, after seven years, and being told that I was the best worker they ever had! The bills continued to pile up, and we had to put our house on the market to sell it. People were delivering food to us in paper bags on the porch. Thank God for friends! I lost all confidence in myself, and sunk into a deep depression. I was also feeling the "sudden" empty nest syndrome, as all my children were gone, and I knew that my youngest really belonged at home.
My depression finally lifted, when I got a job in February 1996. I have changed jobs a few times now, and I finally have a job I really like, and they are also very glad to have me. We were never able to recover financially, and finally sold our house (at a loss) a year ago. It has been almost five years now, and I did regain most of my self-confidence. There are still times, when I question if I've forgotten something because of the surgery, or just because that sometimes happens, but I'd say I am back to my old self about 98%.
To bring my story up to date, I started having some pains in my head again, in April (5 years after the last time.) I called my neurosurgeon, who sent me for a CT scan. I'm told I can't have an MRI because of the clip, which is confusing to me, as I see that other people have had MRI's after their clipping, and mine is a titanium clip. Unfortunately, my faith in the medical profession is not unfounded, as the CT scan was inconclusive. The doctor ordered a "double" contrast study. The report says that the double contrast was attempted without success. It also says that they could not see a definite aneurysm, but due to the tortuosity of the vessels, that an aneurysm could not be ruled out either!! Dr. Lansen said that we have two choices. The first one is to put this on the back shelf, and wait to see what happens, and the second is to have an angiogram. He says he is not "married to the idea of an angiogram" as it does have side effects. I told him that I figured he would say that, and I had thought a lot about it, and I have decided to wait and see. If the pains get worse, or continues, then I will decide if I want to have an angiogram or not. He agreed. Those pains have stopped, but I have just gotten over a headache that I had on and off for two weeks now, and I have to admit, that sometimes I get a little scared that it could end up being a second aneurysm. Dr. Lansen said that there is only 1 in a 1,000 chance that an aneurysm could have formed near the clip. I would have felt much better if he had said a 1 in a million chance!
If anyone has any comments, answers, or questions please feel free to contact me. In reading most of these narratives, I do feel as though I have been greatly blessed, and I certainly do look at life from a different perspective after my survival. God bless each and every one of you, and keep the faith!
By the way, the neurosurgeon is no longer in my health care plan, and if I need to have any further surgery, I will have to find another doctor!! Another HMO product!!!
Update: 24 September 2009
I still get the "sharp pains" in my head and have come to find out that they had nothing to do with the aneurysm They are from what's call "TMJ" (tempomandibular joint disease), which is caused by clenching (grinding) your teeth (stress). Taking just regular Advil relieves the pains. However, the sharp pains were the reason I went to get checked out and found the aneurysm......guess everything does happen for a reason! God bless you all.
Update: 28 October 2011
Here We Go Again.....16 years later!
As you can see from my original narrative I had an aneurysm clipped in 1995 that was found coincidentally. My recovery from that was quite amazing as I knew then and know even better now.
On July 23, 2011 I suddenly had "the worst headache" in my life. I immediately knew what it was. I was at a friends house shampooing her carpets, as I was about to move from Las Vegas, NV to NC with my husband two weeks later. I turned off the carpet cleaner and told my friend about my headache and convinced her that it would be best for me to call my husband and tell him I had a bad headache and my friend Stacy could then drive our car to our house to pick him up and he could come down and drive me home as I didn't want to drive. (I was afraid if I told him how bad my headache was, he would be scared and rush to get me and have an accident.) I waited a while and tried to figure out what I should do. Mean while, I went outside to smoke a cigarette, which made me nauseous and I vomited. Stacy left to get my husband, and I went out again to attempt to smoke, which again made me vomit. I called the "on call nurse" at my insurance company and she told me to call 911. I kept telling her I did not want to call them that my husband was coming and he could drive me to the hospital, but she kept insisting that I call 911. She convinced me and I hung up with her and called 911, in the mean time Stacy and my husband finally arrived and I had her call our boss (a nurse practitioner) to see which was the best hospital to go to. The paramedics arrived and then the ambulance and off to the hospital I went. This was now 2 hours after my headache began. Most of the rest of this will be from what I was told, as I do not remember much of it. I guess I knew I had no choice but to "let go" of the control I had and "let God".
I was taken to the hospital of my choice where they performed a CT scan and found a subarachnoid bleed and sent me VIA ambulance to another hospital that could handle this situation. The second hospital did an angiogram to confirm the bleed. Yes, I did indeed have a ruptured aneurysm and three smaller ones too that had not ruptured yet! I was scheduled for surgery in the morning to clip the one that had bled.
My husband contacted our children in NY and NC. One from NY and the one from NC made arrangements to fly out to us asap. After all, my prognosis was not good and my husband would be alone to tend to me and get the house packed for the moving truck in two weeks.
I was told I had surgery and did pretty well until I developed fluid and they had to drain the fluid from my right lung (350 cc's). I developed severe double pneumonia and had to be intubated and put on life support (respirator). And was on triple H (a lot of I.V. fluids) as I was struggling with that for about 9 days. I was finally extubated and then developed a blood infection which they feared might be MRSA. It was not, thank God, and was cleared with antibiotics. The doctors decided to coil one of the other aneurysms I had on the right side of my brain (2mm), because of the one that bled which was only at 4mm. Unfortunately, after the radiologist had placed the first coil and the stent, he attempted to place a second coil, which made the first placed coil dislodge and fall into a different artery so the procedure was aborted. He did, mistakenly, tell my daughter and husband that I had a seizure during the procedure and they would not know how bad the effects would be yet. Thank God he was wrong about this and I did NOT have a seizure!
Then I was bleeding from the site in my groin where they attempted the coiling. The nurse wanted to use a certain procedure she felt would work first, but the MD insisted on trying two other procedures, which did NOT work. The nurse (bless her) called the MD in the middle of the night and told him these two procedures did not work and could she now use the one she felt would work and he said yes. After she applied this procedure, I finally stopped bleeding after 14 hours and having a blood count of 6.2 (normal being above 12) and needing two units of blood transfused to me. This proceudre was extremely painful, but had to be done. I was finally discharged from the hospital 4 days later, after being in ICU for three weeks!
Our house had been sold and our furniture was on a moving truck to NC. We stayed at my friend Stacy's house for about a week and then I was permitted to fly to NC, but I could not drive with my husband, so my husband (74 yrs old) had to drive from NV to NC alone and my middle daughter from NY flew with me to NC. My oldest daughter and her two sons came down to NC to see me and we were all together for about a week, but I have very few memories of this time.
I still see many doctors and go to P.T. twice a week, my balance is still off, my memory is terrible and I get dizzy. I am on blood thinners (Plavix and ASA 325mg) which cause me to bruise very easily. I am taking Keppra (anti seizure med) which could possibly cause dizziness and balance and memory problems, but I cannot go off it yet even though I have not had any seizures. I had an EEG and it showed "irritability" (spikes) in my brain where the bleed was so I have to stay on the med for another six months (to prevent any seizures) and repeat the EEG to see if it gets better so I can go off this med to see if IT could possibly be the cause of the dizziness and memory problems or if they are from the brain injury. I can, however, reduce for two weeks on Nov 11th and then stop my Plavix , hopefully getting a lot less "purple" bruises when I fall or bump into things and worry less about possibly braking a hip when I fall (I also have osteoporosis). So, other than being confused, forgetful, dizzy, weak, unbalanced and having a distorted sense of taste, I am doing quite well for all I've been through. I am on disability from my job at this point and the future remains to be seen?
I have not, nor will not smoke again, as I feel like I at least owe that to my children who, without hesitation, dropped everything going on in their lives to be with me when I needed them. I tried many, many things to stop smoking unsuccessfully, nothing worked, but this has given me the strength to do it. I researched and found out that someone who has aneurysms and smokes, has a 50% more chance of rupturing their aneurysms!! And I do have three more that may even grow. I miss my smoking very much, but really feel I owe my girls! I have to have a CT scan six months from my surgery to see if there are any changes. I was never aware after my first clipping in 1995 that I had or could have any other aneurysms, and therefore was not advised to f/u with a neurosurgeon in the future. I will now f/u with a neurosurgeon even if they don't advise it!!
There may be more details, but that is all I am aware of right now, so I will close and thank you all in advance for your thoughts and prayers. God bless you all.
PS For all you smokers, remember that 50% More chance of rupturing an aneurysm that I didn't know about!!
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