They decided to monitor my Annie

[SeekingHim]

Hi everyone,
I saw the neurosurgeon team last week and they have decided that they will monitor my annie. He believes the risk is much higher to do the surgery than to watch it. I am not sure how I feel about this, still processing it all. :confused: The annie is 4 mm along the right carotid area mostly below the optic trunk.(carotid cave). It is mostly extradural from what they can see. My fear is the family history of rupture is several generations. They will recheck me in one year. My question is this: Does this sound reasonable, or should I request a 2nd opinion? Your input is greatly appreciated. I am not sure what to do next. Or should I just ignore the annie and go on as before I knew it was there?

The past 6 weeks have been really hard, as I was loosing my short term memory, severe vision issues, hallucinations, nightmares, severe fatigue, and so on. These horrible headaches have been almost everyday since Christmas and the Dr.'s had me on so much medication. I have been off work and pretty much in bed for 6 months, but nothing was helping. After research I convinced the doc to let me go off the topamax and most of the symtpoms disappeared, except of course the headaches. The neuroteam is convinced that the headaches are nothing to do with the annie. They are migraines and/or rebound headaches. After going off the topamax within 24 hours my memory starting improve, almost all the other symptoms are gone and I had 4 (almost) headache free days. Today it is back with a vengence!

Any advise on what to do next is welcome. I guess I am just scared, knowing what an annie can do, and with this pain, how will i know if something is wrong?

Thanks for letting me ramble on. You are all such a blessing to me!

[sarahin]

Hi,
I have a 11mm annie on the right carotid by the opthalmic artery. My doctor doesn't want to treat it. I, personally, have made arrangements for a second opinion. If it is better to not to treat it I'll deal with it. A second opinion is worth it to ease my mind that I'm doing the right thing. My best wishes to you. I know how stressful it is.

Sarah
Treated annie clipped March '07

[ChrisC]

I agree, I don't think it's a bad idea at all to have a second, third or fourth opinion.........then go with what you feel most comfortable with. My prayers are with you.

[snapdragon]

(((HUGS))) sweetie ,I know this is so hard , and a second opp is something I feel is wise , you need to feel as comfortable with the course of treatment as possiable hun and by asking for a second opp it helps in more ways than one , it also puts you back in the drivers seat so to speek . When we find out about our annies I think we all feel so over whelmed we loose that feeling ,and feel we have no choices & feel at the mircey of our DR.s to know what is best for us , but having more than one Dr. telling you the same thing is best for you can ease the mind and you will feel you have done your part in getting the answers . IMO that helps alot .I will keep you in my prayers sweetie . Sending posative vibes your way , take care .

[Chris B]

I feel for you, my annie is in pretty much the same spot, and I've been experiencing pulsing in my left ear/head side and acute sound sensitivity on that side, even to my own voice. After I found out about the annie, I spent a year going to various specialists to find out if I had a hearing problem or something else going on, and the answer was no. In the middle, I went to another neurosurgeon for advice as I was just going to be monitored, and he concurred with first neurosurgeon, to monitor. This was about an 8 month period. Then they had me in to the first neurosurgeon for a consultation and I had to be very clear about how this annie has affected my life, giving up my music (second source of income), trouble sleeping due to the pulsing, and the sound sensitivity. I think based on those issues, and the fact that I really did try to find another cause for the symptoms, they decided to offer a surgery, they'll be going in through the neck and putting a covered stent inside the artery, blocking off the blood flow to the poofed out artery/aneurysm and the idea will be that without a blood supply it should shrivel up. They can't guarantee my symptoms will go away, but I think they will. It was a long road from March 2006 to today, I go for the pre-admission blood tests/xrays and then will have the procedure end of June or early July. If I didn't have the symptoms, I wonder if I could have lived with the idea of the aneurysm, it's like they were constant reminders and it was driving me nuts mentally, let alone the symptoms themselves. I realized early on from the great people here, that you have to be your own advocate. Please keep us posted.

xoxo
Chris B

[pamuk]

Hi

I believe if you dont feel totally comfortable with a decision or a neurosurgeon then yes get a second opinion (or a third or fourth if necessary). I feel that if you are trusting your brain with someone you need to feel totally sure about their decisions.

I have had a 7mm annie coiled in the right internal carotid artery and a 6.5 mm annie coiled. in the left internal carotid artery (both were unruptured found by accident) I also have an annie less than 5mm in the left carotid artery which they are monitoring, they are also monitoring another three annies in different areas.- I have a total of 7 annies, three have been treated, four remain untreated. My neurosurgeon tells me that to treat these four would be more riskier than leaving them and monitoring them. It has taken me a while to accept this and my neurosurgeon has been very good and explained about each annie in detail and his reasons for not operating on each annie right now. I am being closely monitored, by this I mean annual scans and I feel ok about it.

If you decide not to get a second opinion then maybe you could ask your neurosurgeon to explain his decision to you and to explain why, rather than just saying it is more risky to operate than to leave the annie, with a better understanding of his reasons then maybe you will be reassured.

Best wishes

pam from england

[silverfern]

Definately agree, I would seek a 2nd opinion, if he's a good doctor he won't have an issue with that
Good Luck
Catherine x

[BLopez]

I agree about a second opinion. I was diagnosed with a 10 mm annie in the carotid artery, behind my right eye.
I was first told by a neurosurgeon is Dallas that the risk was too great and also that the headaches, dizziness, off balance feelings were not associated with the annie. Hmmmppphh!
I was told by family, friends and coworkers to get a second opinion. After going to two other neuros, that looked at my x-ray and told me that the risk was too great and couldnt' do anything for me, I found a third neuro that advised me that it could be done and very much needed to be dealt.
He sent me to a surgeon in Ft Worth, TX that specialized in coiling surgeries with great success.
I feel sooooo much better after having the annie coiled. I have the occasional headaches and a few migraines on busy days. But I can definitely tell the difference. It's like night and day.
Had I listened to the first neuro in Dallas, I would have had to live with the thought of losing my right eye permanently and God knows what other complictions would of arose if the annie ruptured.

Good luck, you will be in my prayers!
Barb

[cindybear]

I had 6 opinions about my aneurysm...All the same..inoperable..to dangerous..All within 24 months...Then it started to grow...Then they said Had to try....To dangerous to leave...Now I have a stent, It still is not treated.( Blood is still geting to the aneurysm at every heart beat ) Could not get coils at the time when stent was placed..Had a stroke..They stoped and saved my life..Now I am back at being inoperable...To dangerous to touch...And at each level..I had to except it..To go on...This is what you have to do..Whatever you have to do, How many opionions it takes..Whatever it is going to make you feel you have done everything you can, and that you can live with it, and exceppt. Which is a very hard thing to except..A potential time bomb in your head. But you have to be hapy with whatever decision you make !! Hugs., Cindy

[Kyria Dylan]

Hi everyone,
I saw the neurosurgeon team last week and they have decided that they will monitor my annie. He believes the risk is much higher to do the surgery than to watch it. I am not sure how I feel about this, still processing it all. :confused: The annie is 4 mm along the right carotid area mostly below the optic trunk.(carotid cave). It is mostly extradural from what they can see. My fear is the family history of rupture is several generations. They will recheck me in one year. My question is this: Does this sound reasonable, or should I request a 2nd opinion? Your input is greatly appreciated. I am not sure what to do next. Or should I just ignore the annie and go on as before I knew it was there?

The past 6 weeks have been really hard, as I was loosing my short term memory, severe vision issues, hallucinations, nightmares, severe fatigue, and so on. These horrible headaches have been almost everyday since Christmas and the Dr.'s had me on so much medication. I have been off work and pretty much in bed for 6 months, but nothing was helping. After research I convinced the doc to let me go off the topamax and most of the symtpoms disappeared, except of course the headaches. The neuroteam is convinced that the headaches are nothing to do with the annie. They are migraines and/or rebound headaches. After going off the topamax within 24 hours my memory starting improve, almost all the other symptoms are gone and I had 4 (almost) headache free days. Today it is back with a vengence!

Any advise on what to do next is welcome. I guess I am just scared, knowing what an annie can do, and with this pain, how will i know if something is wrong?

Thanks for letting me ramble on. You are all such a blessing to me!

It has been awhile since your post and i am wondering what you decided to do,did you go for another opinion? are you still having the headaches? i hope all is going well for you and look forward to an update.........

[MarieT]

A second opinion is always good. I to have an unruptured 3mm annie. They found it during the coiling of my 7mm ruptured annie. I do believe that they can cause headaches. I am still suffereing from them on a daily basis. You are going to find that many docs don't believe us. I still have them to this day but thankfully I do have a doc that believes it. One major important thing is-find a doctor that is knowledgeable about annies, believes you about the headaches and that you feel you can trust with your life. Good luck to you. You are never alone in this. Tina

[sarahin]

Saw my neurosurgeon Friday and talked to him about my carotid annie that he doesn't recommend treating. He told me the risk of rupture was low and the more likely problem was future troubles due to the pressure of the annie causing "symptoms". The annie is currently 11mm. I asked him if it should be monitored and so he ordered a MRI for 2 years from now. I currently am having problems with that eyelid that I am told is unrelated- it's due to Bell's Palsey. I have a doctor at Stanford who I sent my films to for a second opinion. I'm also seeing a neuro-opthalmologist. Did you decide to get a second opinion? How are you doing?
Sarah

[Lauren]

Hi

I have a 3 mm annie in the left carotid artery, just behind the optic nerve. I too received the recommendation to monitor vs. clip/coil because the risk profile of interventiuon outweighed the risk profile of rupture. I had mixed emotions about the recommendation (as it sounds you do too). Having researched my doc very well and getting additional opinions from his colleagues/staff, I feel as good as one can feel about the plan. There are times, however, that I wish it was treated so that I'd feel less "unsettled". That said, since the risk of having more increases by the mere presence of one, I'm not sure I'd go back to my pre-dx self. One major difference between us -- I appear to be largely asymptomatic with only occasional (all be it horific) headaches.

Best to you,
Lauren

[ChrisC]

Wait and see is an option that EVERYONE has the right to choose if they so desire. It's totally up to the patient and the doctor - - - the patient being the most important. If the patient is not comfortable with the original choices, then it's okay to go to a second, third or fourth doctor - and go with the one that you feel the most comfortable with, who has your best interest at heart, and one who you trust the most.

<Deleted>

[sarahin]

Seems that there are a few of us with carotid artery annies sitting just below the brain that have been advised that they aren't worth the risk of treating. My surgeon has been horrible about explaining why that is or anything else. He seems quite miffed that I ask and doesn't really answer me. There is obviously a rationale for not treating them. Seeing that it's me , not him, that has the large untreated annie I'm wanting to find somebody that will explain it to me.
Needed to vent *ack -
Sarah

[Gabrielli]

Wait and see is an option that EVERYONE has the right to choose if they so desire. It's totally up to the patient and the doctor - - - the patient being the most important. If the patient is not comfortable with the original choices, then it's okay to go to a second, third or fourth doctor - and go with the one that you feel the most comfortable with, who has your best interest at heart, and one who you trust the most.

<Deleted>

<Deleted>
I heard a lot of things about topamax and it seems this is a nasty drug...glad to hear you're off of it. I had two 4mm annie's that I was also told they could watch...it was my choice to have the surgery as this is yours.
In my thoughts
ooxx
mimi