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Susanne - 24 November 2002
28 April 2001
In January 2001 I went to a neurologist, because I had since a half year a lot of headaches. They make a MRI and they found one aneurysm, after that they made an angiogram and found a second one and they thought about a third one. I was shocked.
On the 23 March they coiled the biggest aneurysm, they needed 5 hours for the coiling. Now I can not find a doc who operate the second one, because the second one could not coiled. I was going to two doctors, but they say, that a surgery by clipping is to risk, because the 2nd aneurysm is in the middle of the brain at the carotid internal left extradural and the 3rd is at the basilar artery. This is a really bad feeling to know you can not do anything with this two unruptured aneurysm without coil and clip.
In the next week I go to my work and I will see, if it possible for me to live a normal life. I do not know it. In August/September I have a control angiogram for the coiled aneurysm and the other ones. If the other ones will be bigger, they want to do a surgery or coiling.
I am the second one in my family with an aneurysm, my sister has a big one (2,8 cm), they coiled it in 1997. I am 34 years old and come from Germany. Sorry about my bad english, but it is a long time ago the school. If someone is in the same position as me, maybe we can correspondent together. I think it is a big help this site for all aneurysm-patients.
Update 19 Jun 2001
My cousin has an aneurysm at her neck, the surgery will be in January in Berlin. I hope it will be good! My mother and my brother was going to the MRT, because my mother had trouble on her right eye, they thought, it could be an aneurysm. But it is great, she has not an aneurysm and my brother has not an aneurysm too.
In the next week I go to a cure in a health resort at the Eastsea. I hope it will be help to have a better life and future and will giving a new joy in living. Last week I had a bad headache over the left eye, I was frightened to have a rupture, but the next day, the headache was gone and I was lucky.
Update 4 Aug 2001
The cure was over 5 weeks long. On the first day I met Bettina. She was having an aneurysm too. The surgery of her was only 2 hours long by clipping. She was without pain and other things. This is a hope for all aneurysm-patients. In the next week I have a control angiogram in the University Clinic, and I hope a coiling for the second aneurysm.
Update 13 Aug 2001
Last week I was in hospital. On monday they make a MRT with contrast, on Thursday an angiogram. The coil in the biggest aneurysm is optimally placed! The third aneurysm is not an aneurysm, I have in the back of my brain more arteries than a normal human. But the second is the problem, it seems bigger than in march.
Two days later I have a coiling for this aneurysm, first they think about a stent, but the artery has a curve and in this curve, there is the aneurysm, that is a problem to place a stent. They think about a balloon helping to keep the coil into this aneurysm, but it can not help, the coil can not place into the aneurysm. A surgery by clipping is too risky, because the aneurysm is too deep in the brain. Now I must wait and hope it will not rupture in my life.
In one year I have a control and maybe the third coiling and I hope it will be lucky than. In hospital I meet a women, who had a rupture in February, she was in coma for three weeks, now she is ok, but she has more unruptured aneurysm in her brain, two more than in February. I think it is the best to make every year a control by MRA/MRI for new aneurysm.
Update 24 Jan 2002
The 22 January 2001, one year ago, the MRI-Doc said to me "You have a brain aneurysm". It was a big shock for me. Now, the biggest one is coiled, but the second aneurysm, where two coil-surgery had fail, makes me often problems. In november 2001 I get a very bad headaches, I was only lay on my bed, because, when I was get up, I was falling in sickness. 3 weeks later I got a MRI, but the aneurysm was ok. They thought about a lumbar-puncture, but I did not want to go into hospital again. But since this time I felt a lump on my head. One month later I went to my doc, they made a CT and found out, that the head-bone is thin, they called it "post-traumatic". But it seems to be not so bad. I do not know, but I hope it!
The last year was very bad and an experience, but I want to see the world, my dream is to see New Orleans. In April I fly with a friend to Atlanta for three weeks, we have rent a car and want to see the south of the states. If then my second aneurysm will rupture in the plane or on the tour, I am in America and I think with the best doc's for aneurysm (In Germany no one will make a clip-surgery). See you all in April, my friends!
Update: 11 Jul 2002
On Monday the 08th of July, I was to the control examination in the university hospital clinic again. The right paraophthalmic carotid aneurysm is closed completely, the left, inoperable small Aneurysm has not grown. The doctors have suggested to me a control examination in a year with the indication to a renewed coiling, in the hope which is available then a suitable material for closing small aneurysm.
That is a good news that the small aneurysm has not grown, because I journed to the states with flying in May. It was a great journey with my girlfriend. We have met Bill and his family, it was very nice! And We have seen a lot in the south east in the 3 weeks, we traveled there. And I am so lucky, that I have done this trip to Bill and the states!
I think, this all was helped me, to have more trust to my life with aneurysm and it takes my Fear better away. Now I will hope, that the headaches, that I have often, are "normal" headaches and in the next year, I hope the doctors can close the second small aneurysm.
Update: 20 Jul 2002
After I had read the doctor's report from the control MRT, I wanted to wait till the next year. Then I phoned Anette, she also suffered from an inoperable Aneurysm. She would, meanwhile, successfully became operated for clipping the aneurysm by a cut over the Eyebrow. I have never heard before about this surgery over the eyebrow. But the doctor says, that is the short way. It is realy true. I have send my aneurysm pictures to another clinic, who have a magnificent call as the best hospital for clipping surgery. Maybe they can help me?!
Since the last 2 weeks I have daily headaches over the eyes, and a few days ago, I have found a brown spot on the eye. I went to an eye doc and it is a mole, a Birthmark on the left eye, the eye, which has the small aneurysm near it. Not many people get a mole on the eye, but it seems to be my destiny to get rare illness.
When the other clinic response me, I inform you all. Thanks a lot!
Update: 20 Aug 2002
From the hospital: the International Neuroscience Institute (INI) in Hannover, Germany, I have an information that they send my aneurysm pictures to Prof. Dr. Moret in Paris. He makes the coiling surgery in the INI, but I have write in my letter to the INI, that I want to have a clipping surgery. The small aneurysm is saccular and has a small narrow neck, this neck is too small for a coil, that is the reason, two coiling surgery last year has failed. I do not know, what I can do, I wait for an answer from the INI about therapy methods.
Yesterday I have telephone with a young man, 30 years old, he had e-mailing me 3 months ago, in the mail he asked about a good hospital for aneurysm surgery. I told him the University Clinic in Essen, Germany. He was there for coiling surgery, his aneurysm was small (5 mm), and during the coiling surgery, the aneurysm ruptured. He is well, but has many bad headaches now.
It was hard to hear this, but he is ok, that is good, but so often the doc`s tells, that small aneurysm under 7 or 10 mm does not rupture. That is wrong, it is individual and so different! I think all aneurysm, that found, should be therapy!
My biggest aneurysm, (I have study my pictures before sending to hospital) has a big wide neck (over 10 mm), it looks like a half ball on the artery. It is really a performance, the coiling of this aneurym, I hope the coil stay in the aneurysm and makes not problem in my future like dropping back into the artery.
In one week, I fly with my friend Anja for holiday to Malta, I have no fear to fly or for a rupture. The life is too short and great to be always afraid of my aneurysm.
I hope you all enjoy the great life and every day and time like a present!!! It is a present, every day!!!"
Update: 19 Sep 2002
I have get no response from the International Neuroscience Institute (INI) in Hannover. I called them by telephone and with letters. They did not know, if my DSA-Pictures were in Paris or Hannover. Then I wished the pictures back, I got them yesterday. I found out, that they had send me pictures from another person. What an organisation is the INI? Terrible!!!
Today I send my pictures to the Mainz University Clinic, in the hope to get an (good!!!) answer, and maybe a clipping surgery.
Update: 10 Oct 2002
I can not believe it, but it seems to be reality. Prof Perneczky from the University-Clinik Mainz think, that he can and would make a surgery for my small aneurym. In 12 days I meet him in Mainz for a speaking about the therapy. I hope it will be a good date. It has surprise me, because the INI had write to me, that they only do maybe a coiling produce.
Prof. Perneczky ist the first Neurosurgeon, who gives me hope and I am very lucky, but can't believe and trust this, maybe when I have the surgery date in my hand.
Update: 25 Oct 2002
I was in the University Clinic Mainz and met Professor Perneczky. He was in a surgery, then I went with his secretary to the surgery-room and he came with the surgery dress like the doc`s in the film "emergency room", Some blood stuck to his clothes. He told me, that the problem for a clipping could be the bone in the near of my aneurysm. In a week or two weeks I go to the clinic and we make a MRT and CT for the anatomy of the bone, if this is ok, the surgery can follow. If the bone with the aneurysm is too difficult, I think, nobody can do a surgery in any time of my life!
But Professor Perneczky is a very good aneurysm-operateur, a clip has got his name! The pain about the left eye, comes unambiguously from this aneurysm, he thinks! The first doctor who takes seriously my small aneurysm!
I hope the anatomy isn't so difficult for a clip-surgery, then I am the happiest one of the world. Prof Perneczky has on the same day birthday as me, and he thinks, that is a big reason too, to help, that told his secretary to me. That can gives me luck?!
Update: 7 Jan 2003
My second aneurysm is clipped, the surgery was at 19th of November. During the surgery, my doc, the excellent Doc Perneczky, found a new aneurysm at the artery ophthalmic. He wrapped it, because clipping was not going on. He made a eyebrow-surgery. After the surgery I lost some brain water. They made a liquer dranaige for a few days. Now I was for 5 weeks in rehab, but sometimes I have headaches, but not so much as after the surgery.
In a few days I have a control-angiographie and I hope it will be ending with aneurysm. Now I have 3 aneurysms: one coiled, one clipped and one wrapped, that is enough for my life.
Thank you all for praying and thanks to the famous Doc Perneczky from the university-clinic Mainz in Germany!!!
Update: 27 Mar 2003
In January I was at my checkup angiogram, the aneurysms operated are ok. At the Basilar is still seen uniting vessel expansion, this must be watched as well as the wrapped aneurysm. In a week I start again to work by the hour, it is for reintegration. On some days I feel very good to others of some. I often have a headache in the forehead area, I also have a fazialisparese (paralysis of the face musculature in the supply area of the 7th cranial nerve)there. I can in front of out seen since the pains are then increased sudden changes in the weather.
But I am very glad, which gone well is the operation and I could have an operation. The 11-19-2002 is like my second birthday. My sister had her Coiling in 1997, but some blood still ran into her big aneurysm (2.8 cm), at the last one control has one established the Aneurysm has closed. It is a wonder, one suspects which could be connected with the multiple-sklerose medicine which she must take because of her multiple sklerose.
Two weeks ago, a woman from my work, the Post Goverment in Germany, 22 years old, died suddenly from an aneurysm. This is hard to hear, that people died so young with an aneurysm. I know my aneurysms since I was 34 years old, now I am 36 years old and I live with three aneurysms. This is a big luck I can not believe sometimes.
Update: 28 Apr 2003
Since the first of April I am working half the time, in May I will work full time. Three weeks ago my nose was leaking, I got a test-strip from the pharmacy to look for glucose (sugar) in my nose. The test-stripes was green for ten days, yellow was ok, but green, it looks like cerebralspinal fluid.
I got a catscan, but it is difficult to see anything, because I have many artefacts from my coil, clip and the titan in my forehead. Now I have problems with my right eye, where the surgery was, with eye inflammation. I have problems to lay, when my head is down, now I have take the head side of my bed high, sometimes I nearly sit in my bed. I think it is the intracranial pressure. Often I forget names and things, what I have done in the past. Have someone the same problems? But I am lucky, that I had have this surgery for the rest of my life.
Update: 14 Jul 2003
The report from my last angiogram has reach me: The coiled and clipped aneuryms are ok. The wrapped aneurysm must check up. But I have a Suspicion of an aneurysm at the basilar artery point in the near of the Superior cerebellar artery (the 4th???) and an unusual sling at the posterior cerebral artery. My next check-up I have at the first of september.
Sometimes I feel really good and sometimes I have often pain, where the surgery was. In June I was on holiday for two weeks on the Canary Islands. There I was feeling very good, but now when I working and have stress, I am often very tired and have often pain in my head.
In a week I go for a cure in a rehab center at the North Sea in Germany. I hope it will help to have a better long time memory.
Update: 22 Nov 2003
My cure at the North-Sea was fine. After the cure I was to control examination in the university hospital clinic Essen, who coiled my biggest aneurysm. The doc's could not believe, that my left aneurysm was clipped and that there was found another aneurysm at the ophalmic artery (wrapped). I had a MRA/MRI, in my head is a big dark hole to see, this comes from the clip and coil and it is very difficult to see there anything from the arteries. On the side, where they make the craniotomy is a dark hole too, because the bone is fasten with titanium. The clinic made no utterance about the two treat aneurysm.
In September I had very often pain in my head, where the bone with titanium is. In october I got a therapy with akupuntur and craniosakral therapy. This therapy was help me to have not so often teribble headeaches. My employer was sending me to a doc, this doc wants to send me in pension, but I am now 37 years old, I dont want to go in pension, I will work. Since 3 weeks I have a task/job by my employer. I am now a trainer for the apprentice in the post office, who wants to be a postal clerk. I like this job and don't sit all the time before the computer, because this is very strenuous for me. I hope, I will be a good trainer and this new task is not so strenuous for me and my head!
Update: 29 May 2004
My new Job is ok and makes often happy. In april I had often infections and must always take antibiotics. I found glucose in my nose and it seems to be a csf fistula.
They found in the computertomography a defect in the skull base at the sinus sphenoidalis. But in the moment the leak is closed. The next time my nose is leaking I must suddenly go to hospital. They want to make tests to see the location of the fistula, then they decide, if I get a surgery.
This leaking was the second time after my aneurysm surgery in november 2002. And I think, it was not the last time. But I hope it will be better with no infections.
Update: 29 July 2004
In the last time i had have so much trouble with my head, that i had often vergot, that i have a body and not only a brain. In June i had pain in my belly, i went to my Gynecologist and he sends me to the hospital. They made a surgery, but i had luck, it was all okay. Then they made a scan of my breast an they believe about a cancer of the breast. They made a biopsy, last week i got the Result, it was okay! Befor they made the biopsy, i was driven to the canary islands to made holiday one week.
Now i am very happy about the good results! In this time, my brain was making no problems!!! I hope it will in such a way remain with my brain and my breast!!
Update: 7 May 2005
Since beginning of the year 2005 am not I so well. Recently I could not look any longer to the right side with my right eye, then I fell without reason. I had problems with my Thyroid.
Two weeks ago I had an angiography then in the university clinic, with the aneurysms am everything correct. With the angiography I had a arterie spasm. Probably I worked simply too much and had stress. I hope, it will be better in the next time.
Update: 27 February 2007
In the last two years I had many problems with my Health, some surgery because of woman diseases and thyroid, problems because of head and spinal column.
Two weeks ago I was to control MRI in hospital, two brain arteries are elongated. My Blood pressure is sometimes very high, than very low and the cause seems to be the elongated arteries (basilaris and vertrebral).
Many greetings from Susanne.
Update: 18 October 2007
My blood preasure is sometimes very high, when I am working. In a few days I will be 41 years old and at the end of this year, 2007, I will be retired. I hope the suspicious arteries won't grow, because I am reducing my stress and I now will have many good years of Health.
Update: 17 April 2008
Since march 2008 i`am retired.With my homepage in germany i meet many aneurysm-patients, since 2005 i have an brain-aneurysm-forum, where we can help us together. The story about my brain aneurysms have i now write in a book call: "Diganose: Hirn-Aneurysma" (diagnosis: brain Aneurysm).
Many greetings from germany, Susanne Fedeler
Discussion, comments, or questions: Susanne Fedeler
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Fedeler
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