Please do not be scared. There are risks to all medical testing. The risks are far less than the outcome if you do not have it done and you do have an AVM. Medical testing has come so far. There is staff on hand to handle any problems that may arise. These people perform Angiograms everyday and do know what they are doing. They are there to help and not hurt you.
it is strange that they never mentioned it??!!! ive never had any procedure or been in hosp for anything before so its all quite scary to me and the unknown is scary. they didnt tell me who would do the angio and what experience they have or anything.i know that avm’s are quite a new thing ( last 10 -12 years ) so they need to know what they are doing exactly.
i think i was one of those who ’ slipped through the net ’ when it came to care. at first they said i wasnt even on the list to have an angio on the morning i was meant to havae it,then it was some random doc who come and spoke to me and just said about sroke or death.wasnt my consultant and didnt tel me the benefits of it or how it would help them find more out. most of what i know is from places like this site and looking on the internet. im at st georges hosp in tooting. anyone know whether they are a good hosp for neuro / avm’s???
We were told that there was a 2% chance of complications with the angiogram. My son has now had 5, and two were within 12 hours of each other. He has had no problems. They are scary, and kind of suck, but are the only way to know for sure if you have an AVM. The MRI-A and the CT-A both have risks, as well. The contrast media they use to see the blood vessels both required two page questionnaires and signed consent forms.
i truly love this site and ALL OF YOU. YOU ARE all so helpful and understanding.
i have had an mri and ct scan but they couldnt get enough info from them thats why they said to have an angiogram.
my partner,family and friends said after i didnt do it that they think i made the right decision and they wouldnt have done it either but im 50 / 50 to be honest.i wonder if i should try again.
i smoke so does that make my risks higher? does it make my vessells less strong?
Jenny this is the scariest craziest time in your life! My AVM was found a year ago and when it happened I just wanted to hide. So many scary choices too many 'bad things' could or could not happen. I don't remember my first angio all that well, but do remember the 6 or 7 after. Yes they are scary and the risks seem so high, but look at the risks of doing nothing at all. You are so young and if this is an AVM you have a better chance to get through all of the tests and if necessary treatments. I was 30 when the monster first showed it's ugly face. Make sure your doctors have done a gazillion angios and know exactly what they are looking for. Skill is the most important thing when it comes to nuero people, but you must also trust they will keep you safe. If not it will make the decisions that much harder. Remember right now you are the one in control of your health. If something happens and you have a bleed you lose that control. I couldn't handle the complete loss of control that would've come if I didn't do anything about my bomb and that is why going from diagnosis to surgery in 2 months was the choice I made. Jan 21st I will be a whole year post-op and couldn't be happier about the choices I have made. Good luck dear and if you need anything we are all here to help.
Yes, smoking makes your risk of a bleed higher. When I asked about risks of bleeding, my husband's neurosurgeon said the only definite risk they know about is cigarette smoke.
People without AVMs really don't have a clue what they are or what the risks are. Personally, I would not rely on advice from family and friends, but on your own feeling and your doctor's advice.
Have you considered contacting an AVM expert at another hospital and asking if he/she will review your MRI and CT films? You can have your hospital send them over, and maybe another neuro will see something your own doctor missed.
jenny mattius said:
i truly love this site and ALL OF YOU. YOU ARE all so helpful and understanding.
i have had an mri and ct scan but they couldnt get enough info from them thats why they said to have an angiogram.
my partner,family and friends said after i didnt do it that they think i made the right decision and they wouldnt have done it either but im 50 / 50 to be honest.i wonder if i should try again.
i smoke so does that make my risks higher? does it make my vessells less strong?
morning all. so i had a follow up with my consultant on fri 10th. she said she understands that i didnt have the angio and said its totally a reasonable decision. she showed me my mri scan and wow my vein is big and long. she said that she will have a meeting with other consultants to see whats best for me to do now. angio or not etc. i asked about calming meds during angiogram and she said they dont give anything,i must be completely awake and with it. she said if im in a real mess then they can give me ...tamazipan?? a very small dose though so im not asleep or anything. is this right???????
they still dont know what exactly my vein is....a avm or abnormality i was born with that harmless!!!.oh well il see what they say after the meeting. thanks again all of you for your help and kind words.xx
Hi Jenny......I can only tell you that my angio is on Dec 20th and they told me that I SHOULD ask for a sedative. They give you the option to take it or not prior to it and the nurse practioner said to take it! They will not knock you out for the procedure, but WILL give you something to stay calm. The whole procedure is bacically an hour long and they have you lay flat for four hours and let you go home. It's really not that bad honey so get it done please. Have a great Christmas and let us know whats going on. God bless!!
are you in the usa?
im in london uk and my doc said they DONT give anything but if i kicked up enough they might give me a small tamazipan but it doesnt do much. then lie flat for a minimum of 6 hours after. ive had mri and ct scan with dye and they still dont know what this vein is etc
hope all goes well with yours on 20th.
Hi Jenny.......I am in Canada and it seems they do things different in the UK. I would simply insist on having a sedative because of your stress level. They can't refuse you and you will feel much more at ease while they do the angio. Eventhough you are unsure about having it done, do you not think you will be more at ease knowing what that vein is? I think your taking a huge risk not doing it and as you have read from many others here, it's really a simple procedure. If it is an AVM the risks are too high, especially for a young lady like yourself, to not get a proper diagnosis. Find your strength through your family, this group, and god to go get this taken care of. We're all praying for you Jenny to get better and get this done. Take care dear, I wish you all the best.
Jenny, I am 32 years old. My name is Tim, from my experience, which was not long ago. I am 4 months post op. In a 4 month period I had 2 angiograms, 3 Embolization’s (which is just like an agio but they inject a glue like substance in the veins to seal them to cut them out.) Finley surgery to cut them out. For me, remember everyone is deferent the worst part was coming out of the anesthesia and sitting in hospital. M first angiogram I was so scared. To the point of sick. It was not bad at all. Just the fear. My doctor wanted to do Gamma Knife. But it was not a guarantee. I wanted it gone even with the risks. I had a high chance of being paralyzed on my left side. I just lost some vision in left eye. I got lucky. I have pics up on my page.
The risk of the angiogram is very small compared to the risk of the AVM. When I had mine, we concentrated on finding a good doctor and hospitlal. By having those who have done angiogram on brains before, they were able to do the test with good results. While it was a tough test and bothered me, it was much better than the AVM. I went throught the whole thing with my wife at my side. That was very important.
Also, I had an AVM that was growing. Once they identified the AVM with the angiogram, they were able to do the surgery quickly.
As was talked about in another thread where we discussed how 'bad' angios are, the worst part of it may very well be the having to lie flat on our backs for 6+ hours.
If that is truly the worst part - and for many of us it is indeed, then it is a small thing compared to having an AVM bleed.
I had at least 10-15 angios, but if you haven't had a mra, maybe that could give them the info they need. There is a risk with the angio, but not nearly as much as with an embolization.
Hi Jen,
Yes, the angiogram is scary but very necessary for them to truly determine what you have. It's a great way to rule out that you don't have an AVM and if you do you can totally make an educated decision on your next steps. I had thoughts about not doing it also, I did tons of research and at the end I felt like I needed to know and the risks were low enough that I felt comfortable with my decision. I still freaked out, but I did it. I asked my neurosurgeon tons of questions. I asked him how many he has done, how many were successful, if not what happened? Just ask questions and find someone you trust and has plenty of experience and an awesome track record. Anyways, I was hoping it was not an AVM, but it was, but knowing this I am empowered by controlling the situation. :)
Read up on what to expect so you are prepared. I even found a video of an actual angiogram to put me at ease. :) It's all good. For me it was easy enough...the laying on the back for hours sucked, but it was worth it just to know. Also, from the angiogram ... if you do have an AVM they can tell you if it's low or high risk. :) Good stuff to know...and I also wanted to know because I wanted to see if I was approved to get pregnant or not. I am. :) Just good stuff to know. I wish you the best of luck. My thoughts and prayers are with you....I'm a little passed my one year point of discovery and I have been exactly where you are right now. Feel free to reach out!! We are all here to support you. My thoughts and prayers are with you.
well i never got to meet the person who was going to do my angio.i asked who it was going to be and they didnt know. this was about an hour before i was meant to get it done. it didnt give me confidence.even on fri i asked my consultant who it was going to be and she wasnt sure.i told her i would want to meet them before hand and know how many times they have done an angio etc but she didnt really say anything and talked about other stuff. she said it could be someone else and they are supervised by an experienced person.i thught no way..i know they have to start somewhere but i dont want to be the practicing guinea pig.
I had all my surgeries at stanford in palo alto. It is a teaching hospital, so it is the same sort of situation. They were very good even though they were learning. I live in San Diego though so we flew up there. I don't think you were unreasonable to want the patient care you were asking for. There are risks. I usually met them after being prepped for the angio. It was usually the same rotation of people, and there is more than 2 people around. I stayed awake, it is interesting to watch. You feel a cold bit, and sometimes a burning sensation. Its a little freaky. Get what you can to keep you calm, but it is important you are alert enough to tell if something is going wrong.
Good luck with what you do, remember that if it is, it can rupture any time. If they couldn't tell from your other testing what was going on, it may be the only thing they can do next.
jenny mattius said:
well i never got to meet the person who was going to do my angio.i asked who it was going to be and they didnt know. this was about an hour before i was meant to get it done. it didnt give me confidence.even on fri i asked my consultant who it was going to be and she wasnt sure.i told her i would want to meet them before hand and know how many times they have done an angio etc but she didnt really say anything and talked about other stuff. she said it could be someone else and they are supervised by an experienced person.i thught no way..i know they have to start somewhere but i dont want to be the practicing guinea pig.
Hi Jenny, let us know how you are making out. You sometimes have to take certain little risks to manage the bigger ones. I hope you will get the tests you need. I will have an angiogram this Thursday just to see how I am healing up after my embolization last September! Bear in mind that they have to tell you that you could die, even though it is statistically almost unheard of for a 28 year old to die from an angiogram. Take care and keep us posted.
Hi Jenny,
Have you had any appointments with a specialist? (I don’t know exactly what a consultant is in the UK…a general doctor?) You’re right to want to meet with the person who will be doing the angio, and you should make an appointment with a neurosurgeon, too, because that’s the most likely person to understand AVMs. Even my husband’s neurologist wasn’t completely clear on what an AVM is. The neurosurgeon was the one who had all the info and did the angiograms himself.
jenny mattius said:
well i never got to meet the person who was going to do my angio.i asked who it was going to be and they didnt know. this was about an hour before i was meant to get it done. it didnt give me confidence.even on fri i asked my consultant who it was going to be and she wasnt sure.i told her i would want to meet them before hand and know how many times they have done an angio etc but she didnt really say anything and talked about other stuff. she said it could be someone else and they are supervised by an experienced person.i thught no way..i know they have to start somewhere but i dont want to be the practicing guinea pig.