I am wondering if any of you, when you know that you have it, feel all of a sudden different, like well it doesn't worth anymore to plan anything, like you are not all together in this world, but one foot here, and the other foot in the aftermath. Very strange feeling !
And I am feeling more and more depressed and I have some weird pains that the doctors here in France say are not related.
Thanks for your reply.
AND GOOD LUCK TO YOU ALL
MICHELE
Isn't that a good thing, to know before it ruptures? Then you can elect to treat it and spare the damage and potential death from having it rupture and bleed all over the inside of your brain. Am I wrong? Isn't that why they sometimes tell family members to get checked out? Or at least to watch for symptoms that should be investigated.
When I told my doctor that an event inside my eyeball had been shown to be a harbinger of stroke or heart attach and that my temples felt like I had a caliper being applied to my head, she suggested I get a mouth guard to prevent me from hurting my teeth! Doctors are not really taught about understanding body sensations.
I feel like it was an incredible blessing to have the aneurysm discovered. It was told to me that most are undiscovered until it is too late (death or vegetative state). I may be a Pollyanna of sorts but i am also pro-active in treatment.
I always had sinus headaches and migraines but now I am getting odd pains where I perceive the aneurysm to be. I don't think it is psychosomatic because I will wake up to the pain in that area, I am not sure the doctors know the feelings associated with the aneurysm because they don't have one(hopefully). These forums allow you the opportunity to talk to those who actually have them and can share their experiences.
Good luck to you. Hope you can be a bit more optimistic and that your procedure is soon so you can move forward.
Hi Troy: Thanks for your reply. Yes of course it is a good thing but I am reading a lot about it and opinions are very divergent. For example, here in France, most don't want to do the surgery because they say I have a 5mm only and that I don't smoke and have no high blood pressure. But I do have ischemic (small strokes should we call them ?). This is what I read about treatment on http://www.ninds.nih.gov/disorders/cerebral_aneurysm. Go to the paragraph called: "How are cerebral aneurysms treated?
So here they want to use a coil, so it seems that this procedure is not perfect. I might have to do it again, and again. It is very scary indeed ! I read your discussion page and you do have the same questions I have and you are right !!!
Hi Diana: Thank you and good luck to you too. I tried to go to your profile and see what kind of aneurysm you have, but I didn't find anything. But I am new at this, so perhaps I missed it.
Yes, doctors, for example, say that my ischemic vessels accidents (I don't know how to say this in english and I hope you understand) and a frontal atrophy are not important. I feel it is weird. Ischemic .... are small strokes, so how can it be not important ? Also, I do have so sinus problems too,(I have like dried matter that obstructs and is very anoying) but here also they say it's nothing ! And for many years, I feel pain in my chest, like lacking of oxygen that goes to my brain and compresses it, and my ears seem clocked: and here again they say it is all in my brain ! So, it's because here they don't listen to you at all that I feel I can trust no one ! Tell us about your experience. Thanks and good luck to you.
Hi Jo: Thank you. Well, it seems that it is difficult to decide what to do in this still not well known illness. I will be more confident if I was in the States, but here I don't trust the social system. I think I am going to another country to have a different opinion. Hugs to you Jo.
I felt relief that there was an explanation for my symptoms. I went to a solicitor to write my will the next day! Dying intestate in the UK is pretty awkward for the relatives and I didn't want them to have to go through that. I then went through a couple of weeks of investigations, angios etc while they decided what to do. I only made tentative plans for the next year etc until I was post successful procedure. I made sure as soon as I saw the neurosurgical team that I understood what the risk of bleeding was (in my case fairly reassuring) and what the future plan was. I too had a number of symptoms dismissed, but I think that is because the Docs rely on published research and in the research available no-one had explored symptoms in depth. Most of the research dealing with symptoms is about ruptured aneurysms and studies of unruptured only deal with measurable things such as risk of rupture, double vision etc.
Neurosurgeons subspecialise, so for the best care I suggest you try to make sure you are being looked after by a neurosurgeon with a special interest in neurovascular problems who works with a neurovascular interventional radiologist. If you don't think that is the case ask to be referred to a bigger centre with a neurovascular interest.
Judith
Hi Judith:
I am happy you wrote me because being in England, well you are in Europe, yet not quite. I was thinking of going to England and try to be treated there. I wonder if the fact that I am european, my insurance in France would work.
I never heard of a specialized neurovascular in France. In America yes, and you are telling me that in England, it is the same. But in France they tell you nothing. They consult with you for 10mn. It is the worst health care system.
So, please, tell me would you give me the name of your neuro surgeon, and perhaps I can talk to him. I feel so scared because I find no one here that I can trust.
I am happy that your procedure was successful. Do you know what he did exactly. Was it a coiling or clipping or else ?
When you say you have an explanation for your symptoms: What are you refering to ? About what I said or your doctors ? And if it is from me, which symptoms exactly because I have several.
Thanks July for your kind reply. Good luck and I am so happy for you !
Cordially
Michele
I also feel blessed to have had my annie discovered before a rupture. I never had any symptoms of my aneurysm and was checked only after my sister died of a rupture. After I had the angiogram, to further examine the annie, I experiences some headaches (more like pangs) where my annie was located. I wonder if just the effects of the dye and going into that area is what caused them. It was several weeks after the angiogram before I had the PED. Then several weeks after the procedure I no longer had the headaches or pangs in that area. Did you start having the pain after the angiogram?
Hi Susan: Thank you for your info. My problem is that I didn't have it because I was scared ! I have another appointment on the 29th, but still I am scared. My aneuysm is small (5mm) and is located in the terminus internal carotid, so I want to know how easy it is to access it and what are the best procedures ?
I am still investigating. This is why I open this discussion: I am very scared and don't know if I want to go through or not.
I am sorry I cannot answer you. By the way what is a PED ? I am very new at this. I just found out that I had this anny. Where is yours located and how big it is ?
Good luck Susan. God bless you.
Michele
Hi Michele,
I believe you attended the webinar this afternoon. The doctor impressed me with two comments. I am paraphrasing here but this is what I understood.
Dr. Cohen also commented that it’s not possible to live a risk free life. For me this means that despite our diagnoses and whatever else befalls us, we should try to live each day to the fullest. Make plans, take risks, enjoy, laugh and love. Tomorrow is not promised to anyone. All we have to do is to look at the paper or TV to see all how lives are changed in a twinkling of an eye.
This not to say that we can get through life or face our diagnosis without some worry, regret or anxiousness. The goal is to try to focus more on the positives and to expect the best. Try not to put your life on hold.
I’ve lived with unruptured aneurysms all of my adult life. I also had a ruptured aneurysm successfully clipped. Like you and others, I get pains and sensations that doctors can’t explain. If I would let it, my imagination would drive me crazy with all the possible things that might be wrong. It’s sort of like being in your house alone without the TV or radio on. You begin to hear all sorts of groanings and creaks that you weren’t aware of which start to create anxiety in you. (We’ve all seen and read too many mysteries and hospital dramas.) Eventually, you learn to manage your anxiety level as you begin to recognize what is “normal” for you. When the normal ones come you are able to dismiss them. You also gain an awareness of why the noises, pangs and sounds that you should be alert to and give be immediate attention. Stuff happens. We recently had to cancel our anniversary trip only 4 hours before the taxi was to pick us up because I came down with a virus. It was because I noticed a symptom that I’d learned, over the years, meant impending illness for me that we realized that I wasn’t going to be able to travel,
Please try to fight off letting your diagnosis cause you to be depressed by expecting the best. As you gatther information, have tests and consultations, do try to take sometime to enjoy each day. May God’s peace be with you.
Carole
Hello Michelle it's normal to feel depressed because you feel you're not the same person any more.
There's no need to be frightened. I had head aches too, my Doctor said it was un related as well.
Just know you are still the same Michelle, just haveto go through this hurdle. I felt like you do after my surgery.
But that's all in the past now. I'm sure you will start to accept this and you will deal with it. Sometimes in life things happen to us that we never knew would happen, so we go in shock mode.
God bless love
Nikki xx
Michele, You brought to light a few things. That there are different types of aneurysms that create different sensations. I am new to this site -only 2 or3 days so I am finding my way. i have a large bi-lobed aneurysm in my coradid artery very near to my optical nerve of my left eye. I had a hemoragatic stroke that is how my aneurysm was discovered. I feel pretty good about the medical advice that I have received. I go to a group at Columbia Presbyterian in NYC. I don't know where you are located but I think you have to have confidence in what they tell you or maybe you should investigate another dr. I hope you get a full work up on your heart so they can rule out other issues. Maybe you can print out other people's complaints that match yours and bring it to the dr's so you can show them you are not alone in these sensations. I am a silver lining type of person and in no way am I trying to minimize your experience just trying to shed some positive light. Your experience is valid and the doctors should be giving a bit more support. Are you scheduled for surgery or any other treatment? I wish you well and hope you keep me posted.
Hi Michele,
If you would consider going to Brussels for a consult, I can suggest contacting Jacques Brotchi at Hopital Erasme. http://www.erasme.ulb.ac.be/users.asp?idUser=1269&idLayout=0 He will probably refer you to someone as he’s a consultant now. He is the neurosurgeon in whose care I was entrusted when we moved to Belgium. The facilities and the modes of treatment were on par with major US hospitals.
Good luck.
Carole
Hi Carole:
Thank you very much. Yes I am considering going in another country to have a different opinion. Why ? Because france, with its socialistic health care doesn't cure you anymore. I am trying to write a book about the social health care.
But to the point, yes, I'd like to consult with your doctor. Do you have a phone number for him ?
You are in Belgium I suppose. If so, do you know if, as european, we get health care anywhere in Europe with our health care system from our country. But, I'll look to it.
I tried to go to your site and read about your aneurysm but didn't find anything. But I am new here, so perhaps I missed it. Please let me know about you.
Thank you. I'll wait for your reply.
Cordially
Michele
Hi Carole.
Thanks I'll contact him. Can I tell me that you refered him to me ? and if so, I might need your last name.
Yes, I can explain what's going on here in France, and it is far from being beautiful, especially when they know you are french. They imagine because it's a social system, they are doing you a favor. But they are not because we pay 10 times more for everything than in the states. But that is another story. I'd love to let americans know that they still have the best care.
I understand you are american. I lived in New York for 20 years and I cannot adapt to france any longer. It is killing me !
Sorry to be so negative, but I wanted to explain why I don't want to be treated in France and why I do not trust them.
Thanks again. Are you ok with your aneurysm now ?
Bye. Hugs
Michele
Hi Michelle,
My Neuro told me that everyone gets small strokes as they get older ( they show up as white spots on the scan) They are not harmful so dont worry about that. I think the sooner you get a proper, written opinion the happier you will feel. It is not good to read so much research, except to get a general understanding. You simply wont understand it or the impact of the article in your particular case. Each person and Annie is unique. They can only act as a general guide.
I believe your feelings of being unworldly are due to this matter being unresolved and the fear that you are creating. It is scary, but you have to move on and not leave yourself in a position of fear. The one thing that No doctor can tell you is" when it will bleed out", irrespective of size.
Michelle, You must find a Neuro that you trust and let him help you to decide on your particular Case. You make the decision and this will help you.
Jennifer
Dear Jennifer:
Thank you very much for your kind concern. The reason I read so much about it it's because in France, doctors feel they are gods and they tell you nothing. They decide for you, they make you sign a paper saying you accept the surgery and that you agree with everything, and if something goes wrong, well it's too bad but it's the end of it. You have to live in France to understand how much this health care and the whole hypocritical system is corrupt.
Plus, I know they have older machines for their MRA and everything: For example, my MRA has been done on a 1.5t TOF and the site I read and that I sent you say that in America they are using 3D and 3T and not TOF because it's not reliable. They cannot lie on that because what I read comes from scientific sources.
So, I am scared for only one reason: I have no trust in my country. And I have good news: I am Jewish and I am going to Israel to live and be treated. They have wonderful doctors and work very much like americans do. Plus I will have sunshine all year long (almost) and there would be no antisemitism like it exists in France.
So I thank you all, because reading about how wonderfully you have been treated, and all the knowledge you have been given by your doctors, I understood that I am in danger in France.
I didn't want to talk politics, but I didn't want you either to think I am some kind of a neurotic. I am not. It's living in France that made me sound this way. If you were here, you'll understand. Most americans I know who live in France, they don't really live in France for their health care or anything: They are eternally tourists.
But thank you because you helped me, without knowing it, to go and live where I belong: Israel. Unfortunately I don't have my green card anymore in America, so I cannot go there as a resident. So my best second choice is Israel.
Good luck to you and please forgive me if I chocked you speaking like I did about France. I am writing a book about all the things that are wrong in this country. There is a list as long as from France to Tombouctou.
Kisses
Michele
Hi Michelle,
I am really pleased for you. Not only have you made a decision about your treatment but you have also made a life changing decision to re-locate to Israel. Good on you! I dont think anyone on the site thought you were neurotic. All of us here are going through a challenging journey with good and bad periods.
Good Luck Michelle and I hope everything goes well for you.
Jennifer X
Hi Jenny:
Thank you. I was afraid I had shocked you with my negative assessments on my country. I have a tendency to say what I think, sometimes without thinking of the consequences. Is it in my jewish blood ? (lol).
But yes, I have started to look for a place to live in Israel. so I think October will be a good month to start. It would give me time to plan.
However, I did write to your doctor and he answered with an out of office reply saying that he was on holidays until August 19th.
Yes, I suppose we all have our ups and down. I do have a daughter and a son (although they are away from France) and I just wrote to my daughter and asked her to check hers and her son's brains.
I know it is very difficult and distressing for the people who had the surgery or waiting for one ! Reading everyone history makes me feel, after all, lucky for now ! And it is true that as long as there is life, everything and anything is possible ! The doctor yesterday at the conference (did you attend it ?) said something, as Carol told me, very true: we can cross a street, or drive our car, and boum, we are not in this world anymore ! Unfortunately that's life but we have to take the best of it.
I was wondering if it safe (not for me but for the others) to drive. What if I had a rupture while driving ? I might kill people, might I not ?
To tell the truth, I think I might have been depressed lately and frustrated and especially when I didn't know anything about the aneurysm.
Now that I know quite a bit, I feel much better and more confident in a way: I know now what questions to ask and what to expect. This would have been easy for the French to explain, but well, it is not in them I suppose !
And I repeat, if it was not for you Jennifer, and all the members, I wouldn't have learned as much. If it was not for BAF, I wouldn't have join the meeting yesterday with Dr. Cohen and I wouldn't have learned even more ! Before finding BAF (which I found by chance thanks to my google.com and not google.fr), I felt totally alone with this bomb over my head !
So thank you all and to you Jennifer, who has been so patient explaining everything and giving me different avenues to look at.
Please let me know about your next Angio.
Hugs
Michele