Scared

[tchadwick1]

Hi:

I'm new to this board and I'm so glad that I found it! I was recently diagnosed with a brain aneursym. My aneursym is less than 5mm and has not ruptured. I went to see the neurosurgen on Monday. He has told me that I have two surgery options: clipping or coiling. He also told me that I could wait to have this surgery after the holidays. I'm very frightened. He even told me not to worry and to live my life like I was before. Well, that is so easy for him to say! He kept on throwing statistics at me and it was very overwhelming. I still need to have an angiogram, and I'm very frightened about that. He has told me that he could do the coiling at the same time as the anigogram... as long as my aneursym was the right kind! If not, then he will have to do clipping.

My questions here are: 1) - Has anyone here had either procedure and did they have a good outcome? 2) - Has anyone ever waited that long for surgery? 3) - I'm worried about the angiogram, could someone tell me how that experience was for them?

I appreciate any answers! I'm an emotional wreck right now and trying to hold it all together! It is extremly hard!

Thanks!

[pamuk]

Hi, welcome to our board, we are all here to help you and we understand how you feel. I do understand how you feel, I was diagnosed with five unruptured annies just over 2 years ago and I will never forget the fear and shock I felt in those first few months after diagnosis. Yes my doctors too told me just to carry on with life as normal, but it is hard to do isnt it, I was frightened to do so in case I had a rupture.

I understand your anxieties about whether the surgery can go wrong or the success rates,I had three of my annies coiled under two seperate procedures and the ops went smoothly, and the annies were totally occluded. A scan one year later showed all three remain occluded and I dont expect any problems from them in the future. What you need to remind yourself of is that your doctors want the best for you and that your op will be carried out in planned controlled circumstances, the wont take any unnecessary risks and they will inform you beforehand of all risks, just keep reminding yourself of this I did and it helps.

I also have two more annies under 5mm and my doctor wont treat them, he says they are too small to cause any problems (I wish he would as it isnt half difficult living with the knowledge they are there), so it is good that your doctor is prepared to treat them.

Re the angiogram it is a procedure that currently is the best way of showing the blood vessels, they put a line into the groin (they freeze the groin first) and through that they pass dye into the line and that hightlights the blood vessels, I was awake throughout but prepared for a general anaesthetic just in case they decided to do an annie op that day, but in my case they decided just to do the angiogram. If you want to know the finer details of the angiogram procedure let me know and I will tell you.

After my angiogram I waited three months for my first op to coil one annie, then after that one was coiled I waited another four months for the second op. I think doctors know when it is safe to leave a patient and when they need immediate surgery.

Try not to worry too much, the waiting time after diagnosis is very stressful I found to be worse than the actual surgeries,

If you need any more info please dont hesitate to contact me


pam from UK

[Craig]

Please - Slow down, take a deep breath and relax. Lots of us are "been there done that..." The advice of your neurosurgeon does not surprise me. There are many people who have aneurisms of your size and simply never discover them and die of other things at a ripe old age. Having said that 5mm is a size to pay attention to but the great news it is unruptured. If your aneurism ruptures it's a whole new game and it can be very difficult to recover well from. You are one of the fortunate to have a chance at getting it fixed. Most rupture undiscovered.

Don't sweat the angio - it's a peice of cake. Having a tooth worked on is far more difficult as far as I'm concerned. not all aneurisms can be coiled but if yours can it's a simple procedure and nothing to get too worried about. The coiling is pretty easy as well. Clipping is a much bigger evasive operation and not to be agreed to without a lot of questions.

I have had numerous angiograms and am sitting with a 5.2mm aneurism now. It is my second aneurism. My first burst in Oct 2004. I survived the burst and slowly overcame all the deficit I was left with. The burst annie was finally considered finished after 3 coilings (all on same Annie) It's not common to have to do it three times but twice is a realistic possibility - check with your Dr. My present situation is to monitor the unruptured aneurism before jumping into a clipping procedure (my second aneurism cannot be coiled due to location). Even though I have ruptured before (which make a second rupture a even bigger possibility) my neurosurgeon thinks the risk of a burst while monitoring is less than the risk of a clipping procedure.

I'm not sure where you are from but up here in Canada a clipping procedure could easily wait that long on a non-emergency surgery. If there was a huge risk with waiting the procedure would be done quickly up here. I have to conclude that your Dr. does not consider the procedure a huge emergency for you.

I hope I have calmed you a bit. Many of us have been where you are and in fact in far worse conditions. We can understand your terror now but please don't let it torment you. Try to remain calm and feel free to ask any more questions you have. I'll check back in a bit. Relax, we know it's hard but stay calm. It won't help to get all worked up about it. We all know it's hard but I also know it gets easier with time. You will too soon.

Craig C.

PS Very interesting name....

[annie2105]

I have had 2 clippings and a coiling. Recovery was much quicker from coiling but my annie continued to grow which is unusual I guess. I would listen to your doctor and get a second opinion then I would go with that. I had two doctors on my case and thankfully they agreed. Pray about it and then take a Xanax and relax...hehe. That is what I had to do while waiting! We are all here for you! Blessings on your journey. *hugs*
Lisa

[Diane118]

Welcome to the board! It is true, you have come to the right place, because many of us have been where you are right now. We know exactly how you feel. Yes, it can be very overwhelming to be thrown into the medical world of aneurysm diagnosis and repair. Alot of new information you are being bombarded with - it can be scary. But we are here to assure you that, as Pam noted, you are lucky to be able to have your aneurysm repaired under controlled circumstances, where the chances of a positive outcome are much greater.

My 10mm unruptured annie was diagnosed incidentally after I had a minor stroke (unrelated to the aneurysm), in June 2001. Between October and December of 2001, two attempted coilings failed, due to the location, and my neurosurgeon advised that clipping was not an option for me. I was told to monitor it for 3-5 years. In the fall of 2004, they decided it was time, so I scheduled the coiling for January 2005. Success this time!! Surgery one day, overnight stay in the hospital, and discharge the next day. I had a serious headache for a week, but once that subsided, my head only hurt when I was exhausted. No other pain, though.

I agree with Craig, the coiling procedure is less invasive than the clipping surgery and the recovery is much quicker. However, it is still a form of surgery performed under general anesthesia and should be not be agreed to without alot of serious thought and careful consideration and consultation with your doctors.

I had some of the typical problems others here have had, afterwards: fatigue that never seems to end, short term memory problems (still have some of that), and depression (that too), but otherwise, I'm alive and fine. In fact, I just got a promotion at my job - high pressure, local government job!

Come here often with any questions you have. We wil be here to offer support, assistance, and answers.

Diane

[Lyn]

Hi
Nice to meet you. Of course you are scared and probably a bit confused about your options at the moment. It isn't like being diagnosed with the flu!

I had a 5 mm pericallosal aneurysm clipped two and a half years ago, and I was terrified. I won't lie - clipping is an invasive, and pretty huge operation, but I got through it without any major dramas, and NO major deficits. The good thing about clipping is that it is a 'permanent' option, whereas sometimes coils compact and have to be adjusted/refilled.

As others have said, the most important thing is that you will have a chance to get this before it gets you. Statistically, the odds of survival or complete recovery after rupture are NOT good, so given an opportunity it is a good idea to get it fixed before any damage is done.

My annie was found six months before my doctor even told me it existed. He just wanted me to monitor it. I sought a second opinion and he recommended clipping (wide neck and poor location for coiling). By the time I had it done, it was more than a year between discovery and surgery.

It was an incredibly difficult time - not knowing if the bomb was going to go off, and not knowing what would happen with the surgery. So, I do understand your fears.

It was a long recovery time, BUT I would do it again tomorrow if they find another one - it was not as bad as I expected it would be.

Please feel free to ask any questions, either here or you can PM (private message) me. It helps to have someone around who actually knows what you are feeling.

Keep us posted on whatever you decide to do

Cheers

Lyn :)

[nicd]

I was and probably still am terrified when I woke up in the hospital in London, On and was told by my husband I had had a ruptured aneurysm. (A what???)
I was coiled because the aneurysms ( I have 2) where, on my brain stem, is a dangerous place to attempt clipping. Thank God the coils worked and I feel wonderful to be alive. My Neurosurgeon will forever hold a special place in my heart. My girls are 9 and 7 and were terrified that there mom was gone for 3 weeks but my parents took good care of them. Please be brave although it was easy for me because everything was done before I knew it. Am thinking of you.

Nic

[tchadwick1]

I just wanted to thank all of you for your support and information! You don't know how much it helped to hear from people who have been through this. I went and saw my regular doctor today and she has suggested that I get a second opnion. I made an appointment right away with the 2nd Neurosurgeon for next Thursday. She also reasurred me that this is not an emergent situation, but it does need to be taken care of.

Yes, I am very lucky that they found this now! I didn't think that way when I was first diagnosed! But, I have come to realize that I have a chance to get this thing before it gets me.

I still have my moments, but it is getting a bit better.

I will keep everyone here in my thoughts and prayers as well!

I will let you know what the 2nd neurosurgeon tells me!

[karen47karen]

Hi:

I'm new to this board and I'm so glad that I found it! I was recently diagnosed with a brain aneursym. My aneursym is less than 5mm and has not ruptured. I went to see the neurosurgen on Monday. He has told me that I have two surgery options: clipping or coiling. He also told me that I could wait to have this surgery after the holidays. I'm very frightened. He even told me not to worry and to live my life like I was before. Well, that is so easy for him to say! He kept on throwing statistics at me and it was very overwhelming. I still need to have an angiogram, and I'm very frightened about that. He has told me that he could do the coiling at the same time as the anigogram... as long as my aneursym was the right kind! If not, then he will have to do clipping.

My questions here are: 1) - Has anyone here had either procedure and did they have a good outcome? 2) - Has anyone ever waited that long for surgery? 3) - I'm worried about the angiogram, could someone tell me how that experience was for them?

I appreciate any answers! I'm an emotional wreck right now and trying to hold it all together! It is extremly hard!

Thanks!
Hi Scared,

My name is Karen and I had a brain Aneurysm on Nov. 21, 2006. I had the coil surgery and had a 10% change of coming out of this alive. It's been nine weeks and I'm doing "Great" . The only thing I'm having problems with is my eye sight seems worse than before. I'm still scared that it will happn again. I had family and friends from th east coast to the west coast praying for me the day this happen. Without there prayers I would have never made it. The fear may never go away but I get a second change on life which I will not take lightly. I'll prayer for you!!! Take Care and keep me posted. If I can answer any of your questions please email me.

[karen47karen]

Welcome to the board! It is true, you have come to the right place, because many of us have been where you are right now. We know exactly how you feel. Yes, it can be very overwhelming to be thrown into the medical world of aneurysm diagnosis and repair. Alot of new information you are being bombarded with - it can be scary. But we are here to assure you that, as Pam noted, you are lucky to be able to have your aneurysm repaired under controlled circumstances, where the chances of a positive outcome are much greater.

My 10mm unruptured annie was diagnosed incidentally after I had a minor stroke (unrelated to the aneurysm), in June 2001. Between October and December of 2001, two attempted coilings failed, due to the location, and my neurosurgeon advised that clipping was not an option for me. I was told to monitor it for 3-5 years. In the fall of 2004, they decided it was time, so I scheduled the coiling for January 2005. Success this time!! Surgery one day, overnight stay in the hospital, and discharge the next day. I had a serious headache for a week, but once that subsided, my head only hurt when I was exhausted. No other pain, though.

I agree with Craig, the coiling procedure is less invasive than the clipping surgery and the recovery is much quicker. However, it is still a form of surgery performed under general anesthesia and should be not be agreed to without alot of serious thought and careful consideration and consultation with your doctors.

I had some of the typical problems others here have had, afterwards: fatigue that never seems to end, short term memory problems (still have some of that), and depression (that too), but otherwise, I'm alive and fine. In fact, I just got a promotion at my job - high pressure, local government job!

Come here often with any questions you have. We wil be here to offer support, assistance, and answers.

Diane
Diane,

I have a couple of questions for you.

1. How long did it take for the fatigue stop?

2. I'm in a high presure job also and need to know did you think about leaving your position. I have another surgery that may cause me to spend more time out of work.

3. When did you get to go back full time?

Thank you,
Karen

[silverfern]

Hi there,
I have an 8mm unruptured aneurysm and will be having it coiled next month. I know how scared you are feeling but I find it helps to rationalise the situation and put things in perspective. It's true I get wave of terror sometimes but I find coming on here helps with that plus these thoughts.....
1) It's been there for a while ( I have known for 6 months but the Dr.s have known for 4 years..another story!)
2) loads of people have them and never know and as Craig said....die of something else.
3) On the whole I feel fit & Well
4) I am so lucky it has been found - UNRUPTURED and something can be done
ABOUT IT.
You only have to read the stories on here to realise how devestating a rupture can be.

Please relax and take these messages on board. I was told the biggest factor in a rupture is STRESS, so please try and not stress too much
This site is a lifeline for you and your questions.
As for the agio I had my first last week, read my post 'Angio - a piece of cake', I think most people agree root canals are worse!
Keep coming here and you will find the support you need
Take care
LOL
Catherine

[MikeS.]

Hi,

I will be getting the clipping procedure done (electively) on Wednesday. Much of what you are going through happened to me since my annie is now 5mm. Sooooo many variables go into making a decision on what to do, so I thought I would share some of my experiences:

1. Every Dr. I have met over the past two months (GP's, anesthesiologists, neuros of every kind, etc.) have all told me one thing..... The difference maker in whatever you do is the neuro who works on you. Answer: Get the best if you can!!

2. I had a very good experience at a major center and teaching hospital since they take a team approach. One Dr. should not perform either a coiling or a clipping....it should be a Dr. that specializes in one or the other.

3. Monitoring it is fine if it does not disturb your life. If it does...fix it!! UCLA monitors 200 annie patients, and they have found that over a two year period, 17% of annies grew in size. Obviously growth is not good. Factors such as age, shape and location of aneurysm, are you hypertensive, do you smoke, do you have symptoms (headaches, fatigue, dizziness), should all be factors in deciding what to do.

4. Ask Dr.'s what the statistics are for your outcome if you decide to have surgery.

5. Keep getting opinions and asking questions until you are satisfied! If someone bullies you, then walk out and find someone else if you can.... The good Dr.'s care, and will weigh all the factors....

6. Ask about new tests that are less invasive, as accurate, and release less radiation such as the 4D-CT angiogram (non-invasive and takes 15 minutes).

7. Keep asking questions....and then ask some more!!

Good luck,

Mike