Hi All, I have just been diagnosed with an aneurysm and don't have my consultation untill Febuary 2012. I really don't know what to expect, can anyone enlighten me please?
Let me say first that I am so sorry you have been introduced to our group for the reasons that you have been but now that you have been diagnosed your in the right place for support :-)
Your neuro will tell you what all your options are and what he feels is the best course of action then the decissions are up to you. I have had my annie clipped so the other ways of dealing with an annie I can't give you an opinion on. My words to you are do the best you can to make sure you get all the facts and if your not comfortable get a second opinion.
Thoughts & prayers
Hi Caroline...Are you seeing a Neurologist or a Neurosurgeon? Hard to say what to expect, except they should review records and tell you the next and best plan of action...not sure if I helped you...but hopefully, you will get more information from others...just that they are waiting until February...makes me think they are not as concerned...but you must ask your Doctors now...about any limitations...
Gotcha in my Thoughts...Colleen
Hi Caroline, I am sorry for your news! I was diagnosed last week so I understand the shock and the roller coaster ride you are on! I’m a terribly anxious waiter- which I’m sure most people are in this situation-but I think I would have a heart attack waiting!I also agree that if it were a big problem they would not be waiting so long, however, with that said… I would call around and try to find someone to see you sooner. Hopefully a different neurologist could give you answers sooner. Good luck! I found that docs really want to keep you as their patient so maybe you could use that as leverage- I don’t know- im sorry for how scared and frustrated you must be!
Hi Carolanne and welcome to BAF, the best support group that none of us want to be members of, but are glad we have found each other! -- You will soon understand what I mean by that statement.
First of all is your consult with a surgeon or a neurologist? And, what is the reason they gave you for waiting so long for the consult? How was your annie found? and where is it? Most here will refer to their annies by size and location and what surgery they have/are having done.
I had a 9mm right side internal carotid artery annie in which 2 telescoped PEDs were implanted due to the wide neck of my annie (an attempt at coiling my annie failed because of the wide neck). I also have a left side ICA annie which is 2mm and is on the watch and wait. Most surgeons will not do surgery on annies under 5mm as they find it's too dangerous to attempt repair when they are that small.
As far as what to expect, once you have gotten all the info regarding your annie, the best advise is to read, ask questions, read some more, ask more questions and arm yourself with as much info as you can. Then make a list of questions to talk to your surgeon about prior to surgery -- remember he works for you!
Best wishes and please keep us posted!
Hi All, Thank you all for your kind words. I can now see that I will be logging in here on a daily basis to help me come to terms with my news.
I was under the ENT consultant who refered me for a MRI. I had 4 done over the past 12 months and recieved a letter about 8 weeks ago saying I had the Annie and that it was a low risk one but they wanted me to attend Oxford for a MRA. I had that and that resulted in me recieving a letter that I was CC'd into. The letter was from the Neuroradiologist to the Neurosurgeon. When I called the Neurosurgeons secetary she said that there was a long waiting list and it would be very unlikely that I would see any one before June 2012. I couldnt believe that they sent me this letter and then were saying thay wouldnt see me until then! but she called me back a few days later and gave me a date in Febuary. I don't know what size or the location. I didn't even get an information sheet to advise me of any side effects ect.
One of the first things I done was google it and got so much conflicts information that I didn't know if I was coming or going with it so I was very impressed when I found this site.
Could you all please share with me things that they have been told to aviod doing. I know lifting heavy objects is one. I was booked to go to Kenya in December and when I informed the surgeons secetary she told me that I would need to cancel as he would not give me the ok to fly. I have read on here about people still flying with an Annie. I now feel as though i have been done out of a holiday as I cancelled as soon as the secetary told me.
I now feel as though I'm in limbo really. I don't know what to do from here. Will my GP be able to tell me more about my case or not?
Thank you all
well they will tell you what should be done, when and how. Follow all instructions and stay positive, you'll be fine.And no heavy lifting, get babied, lol.
Carolanne -- I just received my diagnosis last Friday, so I can definitely relate. I was given the news by my neurologist, who had ordered the MRA to check on some other things, and found the annie that way. It was totally unexpected, as I don't have high blood pressure problems, nor has anyone in my family ever had an aneurysm. But there it was, clear as day. He showed me the pictures, which was both interesting and unsettling.
I quickly got online, googled the condition, and found this group among other sites that helped to explain what was going on. I figure since I can't DO anything about the aneurysm, the least I can do is get myself educated about the possible risks, treatments, outcomes, doctors in my general area, etc.
I'm still waiting for a referral to a cerebrovascular neurosurgeon. Hopefully, I'll hear something early next week.
I agree with some of the others: it would seem to me that if there was immediate concern, your appointment would be much sooner. I'm hoping to be able to see SOMEONE before I leave to spend the holidays with family.
As for restrictions, I would DEFINITELY talk with your primary care physician. All I was told by my neurologist was to keep track of my blood pressure and make sure it stays low; no heavy lifting or "bearing down" - things that can cause blood pressure to spike. I don't smoke, so no problem there. I may have to switch some of my asthma meds, as one of them is known to cause a spike in blood pressure. Those are the kinds of things your primary care physician should be able to help you with.
I'm planning a long train trip to visit my brother/family for Christmas, leaving Dec. 18 and returning Jan. 10. No one has said NOT to go, so go I will. Train travel is much more relaxing for me than plane anyway, and I just did a similar trip last August, so I think I should be OK.
Good luck -- this group has been great in listening and answering questions.
Often due to lawsuits, etc., Doctors don't give lists of "do and don'ts" basically common sense...ok here is what my Neurologist said to me...no heavy lifting...High Bp has to be controlled (which it is with meds)...no smoking, no heavy drinking ( a glass of wine or beer here and there ok ), keeping stress at bay...
Hope this helps Carolanne...
I fly because my annie is very small...and my big one is coiled...so flying ok...but before my coiling on my big annie...I was told they wouldn't let me fly...more due to the possibility of rupture and being in the air with no resources...
Colleen, can I ask what size both your small and larger Annie's were?
I'm not sure as to what is a small etc. I have now found out that I have 2, 1 of them being 4mm.
My aneurysm (large one) 9mm, and the (smaller one) is 2mm
Sorry that you have 2 annie's Carolanne...seems more than not ... we all don't just have one, but two, three, etc.,
Anything else you need...ask away...Cyber~thoughts...Colleen