scared and depressed

[Scared and depressed]

Hi,
I just had a ruptured aneurysm in my brain stem on 8/25/06 and had 5 coils inserted. I was very blessed with very little damage - such as some memory problems, coordination, and now alot of depression. I do remember Dr. Hoh; a wonderful Neurosurgeon at Shands Hospital in Gainesville, Florida; sitting at my bedside and telling me that this aneurysm was never going to bother me again - ever. Now; 6 weeks later; I'm being told that I need to have several angiograms over the next few years to check it for re-bleeding and other problems. I am totally petrified of having another angiogram. The possibility of stroke - even death - AGAIN - is just too much for me to deal with. Is there any uninvasive procedure that I could have done that would be able to check the coils and bleeding without an angiogram???? Thanks for listening. Where does the blood that is still inside the aneurysm when they coil it go???? Does it stay in it????? Marge Hinckley

[nicd]

I am going through the same feelings you have. I had a rupture on my brain stem In April 2006. I had the aneurysms (there were 2) coiled and am doing wonderful now. I am facing an angiogram in December to check the aneurysms so please don't feel alone in this. This site is wonderful for having others who are going through the same thing as you to talk to. As for the medical questions I can't answer them but hopefully somebody will know.
Hang in there. I had some of my questions answered on this site and everybody is very helpful!!!

Am thinking of you and pray for you

Hugs Nic

[Scared and depressed]

[B]Thank you sooo much for your answer. Sometimes you feel so alone with your thoughts and fears. This site is a life-saver. I know your angiogram in December will go just fine; and my prayers and thoughts will be right there with you. Will you write and let me know how it went???? If you're brave enough to deal with it; I can be too. We're too young to give up now!!!!!! Thanks again/

[Lyn]

I am so sorry that you are having to go through this ordeal. I never had a rupture, I had an unruptured annie clipped a couple of years ago. Luckily for me, I have never had to have an angiogram - doesn't sound like much fun at all - not to mention risky.

I only have to have CTA scans, but I was told that if I had coiling I would have to have an angiogram at least once a year.

Anyhow, I just wanted to say Hi and let you know that I sympathise with what you are going through.

Cheers

Lyn

[pamuk]

Hi there, welcome to the board, we are all here to help you so post as much as you want and congratulations on becoming another annie survivor

I have had three aneurysms coiled, I had a angiogram to diagnose them, since treatment I have had two check ups, four months post op and one year post op but these have done by MRA, an MRA scan is an MRI scan with contrast - the contrast highlights the blood vessels, it is far less invasive than an angiogram, for an MRA they will put the dye through a vein in your hand. They can also check for bleeding using a CT scan - I had a CT scan done a couple of days after my first surgery.although angiograms are considered the very best for showing everything and everything in the blood vessels they do carry a very small risk, an MRA and CT scan are less invasive.

Re where the blood goes in the coiled annie - I am pretty sure it embolises around the coils.

I live in the UK and the Brain and Spine Foundation in London have an excellent website, on that website you will find a booklet on Coiling which you can view online or download free of charge, it tells you absolutely everything about the procedure from start to finish and it should reassure you. They also produce other booklets you can download/view on MRI Scans, MRA Scans CT Scans and Angiograms, this should give you the information you need. I always believe knowledge is power! then if you still have concerns you can ask your neurosurgeon about the angiogram plans and tell him/her your fears, and ask if another procedure would be possible for you. The website address is www.brainandspine.org.uk

Take care

pam from england

[Happydaze]

Hi Marge and welcome. I'm sorry you are going through such a tough time. It takes alot of time to recover from what you just went through and I understand first hand how you are feeling. - I also had a rupture coiled and they are monitoring another small one just using MRI/MRA's as I am unable to have an angio. My NS seems to think that this is adequate and I'm a 3yr survivor. Get tons of rest and talk to your doctor if you feel really down as there are RX's that will help with that-take care of yourself and let us know how things are going.

_______________
Happydaze

[ChrisC]

Marge, congratulations on your survival. That's THE most important thing - you came thru this ordeal! For that you can be truly thankful! I was coiled too, 3 years ago, and just had my 3 year followup angio (my second since my surgery) and was 100% occluded, so I never have to have another angio! I have to have MRA's every 5 years from now on. One thing I had to keep reminding myself about was that the followup angios were only checking their work.......they weren't deliberately trying to find anything else. That helped a bit. Coiling is not quite as permanent as clipping and they have to keep a closer eye on those of us who've had it done.

The blood that's in the annie is actually quite a small amount and as the coils enter and recoil (they're straight when they go in but are like little hairs and recoil when released from the guide) they displace most of the blood and the rest just clots (which is what it's supposed to do).

I'm also in FL - not far from you! Both our kids went to UF, so I'm familiar with that great institution! I was given Shands as an option, but opted for University of Miami (our son lives there).

Don't stress the future tests, as your anxiety will diminish over the following months. We're here for you, always will be, and we'll be your crutch when your angio time gets closer. (We're known to get on the "cyber" angio table with you and make sure you're ok.) My prayers are with you!

Chris

[Kathie]

Hi Marge
I also had coiling done post rupture of a basilar annie in May '04.
I know how frightening the mere thought of an angio is, I've had a few myself :eek: . My next follow-up will be an MRI/MRA. :D
Although your right that the angio does have risks, I believe they are only minimal. It's their job to inform you that there may be risks, no matter how small.
Chris is right, we're often present, if only in spirit, at each others follow-ups. This site has been a Godsend to me and to many other members. I hope you find the same comfort here.

[mercylee]

Hi,
I'm also from Florida, actually not too far from ChrisC (less than 5miles).
I had my coiling at Jackson Memorial Hospital in Miami in November 2004.
After my coiling, I went for an angiogram not long after and then a year after.
I went for the angiogram a few months before schedule because I was not feeling well, everything turn out to be fine.
When I went back in April they told me I did not have to go for another 2 years unless complication.


All my thoughts with you
Mercy

[cindybear]

Hi,
Last year alone I had 4 angiograms...To check my inoperable aneurysm and for growth and a stent they had placed in...It hadn't grown that year..So I haven;t had to have one this year yet,,Will have one in Jan..To check for growth and stent placement...It is allways scary...But it's the waiting that allways gets me..The actual procedure.isn't that bad...I've had 8 since I've been diagnosed..They say since I got the stent in, it is hard to see it unless I have the angiogram...The stent makes it really blurry...???? Just know we are here for you and your not alone...Hugs, Cindy

[Scared and depressed]

[B]Thanks for all the support and info. I feel much better now that I've read all your comments. I feel that I'm not alone anymore. Having an aneurysm is the scariest health scare I've ever been through. I'm a breast cancer survivor for 5 years now - had a masectomy. That wasn't as scary to me as this was. Maybe because I knew so many people who had gone through it that I had so much support. Having this; I knew of noone who had been through it and all I heard were comments such as "I can't believe you lived" or "aren't you scared of having coils inside your brain???". I know I'm strong enough to go through another angio with your support. I've told myself that I am very blessed to be doing so well and that if I continue to worry about things that I can't control happening; then I'm wasting whatever precious time God is giving me. So many of you are far worse than I and you show such bravery and conviction. Scared still???? Oh yes; but alittle calmer now!!!! Thank you so very much. Chris: you told me alot about the coiling that I was concerned about. I think my first angio will be in January or February; so we'll se just how brave I am!!!!!!!

[cindybear]

We wll be brave together !! Mine is due in Jan 2007, Which it hasn't been checked for a year..So I'm pretty scared it has growed ( since it has growed before ) That is my worse fear, (besidea a burst ),,Even though it's my 9th one, It still makes me very nervous...Huds, Cindy

[jazzyk726]

Hello,

My Father is a Brain Stem Annie Survivor, 11 years now, he has gone through much of what you are going through.. You are not alone!!. The scared and depressed feelings are normal but never loose your sense of humor, my dad didn't, he always cracking jokes even after loosing his balance and falling into the bushes, that catapolted him into the Denny's Restraunt wall. His first response to the employees was " now that I have your attention, I want the finest table in your resturant." Unfortuanately, he had to settle for beside service for braking his ankle.

Hang in there,
Jazzyk726:) :) :) :)

[Scared and depressed]

Why is it that coiling is not as permanent??? Do you eventually have to have another procedure or clipping??? Just wondering. Thanks, Margie

[Craig]

Yes - I agree with Chris, the important thing is how far you have come. The risk with angios are minimul and they are a simple procedure that after having 4 of them I don't worry about the procedure itself. I also think the idea of the stress of waiting does dissipate some with time. Try the one day at a time bit for a while. Lots of people around here for support if you need it. I'm an example of sometimes having to go back for re-coils. Now I'm fine with the aneurism that was involved. Sometimes it takes "practice" to make perfect.

Craig

[ChrisC]

Marge, clipping is sealing the neck of the annie from the outside - just like a potato chip bag clip (sorry for the rotten comparison!) and the clip immediately stops the blood from entering the annie. Coiling is done from the inside and fills it up with platinum hair like wires. Sometimes the coils can shift, or get smaller in it's little ball like state (called compaction) and more coils need to be added to completely fill the annie. The objective is to keep ALL the blood out so it doesn't grow. Coiling is much less invasive and you heal alot faster with sometimes fewer deficits, whereas the clipping involves open brain surgery and manipulation to get where they need to go. Not everyone is a candidate for coiling - if the neck of the annie is too wide, the coils won't stay. On the other hand, not everyone is a candidate for clipping, if the annie has no neck. All depends on the patient, the annie and the surgeon. Hope this helps a bit.

[young and depressed]

Hey Marge,

I just went through my first 6 month angiogram since the rupture. I too was terrified. I think my fear was more of the results than of the procedure itself. However, so you know, it was quick and completely painless. Most of all, the results were fine. Now I only have to go back on the anniversary and then every year after that. The angiogram was painless and I no longer have the fear as I once had. As far as where the blood goes...? I'm not completely sure, but I assume that everyone is different. In my case I had a great deal of fluid in my spine which forced me to have a drain in my back for the last 10 days I was in the hospital (EXTREMELY painful). But again, I assume everyone is different. Stay in close contact with your doctors and dont hesitate to bug them. They need to know. Good Luck!!

Fawn
Albany, NY

[young and depressed]

Hi ChrisC
I've had my aneurysm coiled. Thanks for the information.

Fawn
Albany, NY

[Scared and depressed]

Chris,
Thanks so much for the info. That explained alot for me. I couldn't understand why coiling sometimes has to be re-done. Does the aneurysm ever shrink up and completely go away??? Thanks again friend. Margie

[Scared and depressed]

Craig,
When you go back for re-coiling; do you have the same operation as the first time and have to stay in the hospital for 14 days again???? Thanks, Margie

[FireflyR7]

:o I was only in the hospital for 4 days with both of my surgeries to have a stent & coils put in through my groin artery. Everyone is different & where the Annie is located make a diff. too! I had a rupture that went undiagnosed for a while so I have a long recovery!! Mine was only 4mm after rupture. No they never go away and have to be monitored after & check for more sometimes. No matter what proceedure, sometimes there is a risk of future surgeries if the coils move... Even clipping is not a guaranteed fix. This is a life changing situation that needs to be monitored. It is also a genetic disease and many family members can have them too. :confused: If you need to talk please feel free to call me, I will call you back if you do not have free long distance!!
(636) 933-9464 I am 47 years old, one year post surgeries & being monitored. I hope this has helped?? I will keep you in my prayers!! ;) Tricia