Finding the Right Surgeon?

[fapp]

Hi,

My wife discovered she has a 6 mm unruptured aneurysm in the middle cerebral artery. She doesn't feel she can live with having a "time-bomb" in her head and wants to have it clipped. The research I have read seems to suggest that the risks of surgery outweigh the risk of rupture for one this size. My wife is 36 years old and the two surgeons we have seen have recommended clipping over coiling. I believe we are only hearing part of the story from the surgeons and would very much appreciate comments from anyone that has had a MCA clipped or coiled for that matter. What will she truly be facing after surgery as far as deficits??

Also, we are very frustrated with the process of finding a surgeon. We have seen Dr. Harry Van Loveren at Tampa General Hospital and Dr. Stephen Lewis at Shands in Gainesville, Florida. Does anyone have experience with either doctor?

Any help or information will be greatly appreciated.

[Lyn]

OK, take a deep breath and calm down. I know you are scared for your wife (and, naturally for yourself), but I have to admit, I tend to agree with her.

I am not a doctor, I can only speak from my own experience, but small aneurysms can rupture too. I had a 5 mm annie clipped two years ago and although it was a long recovery and it does have some risk, I am very glad I did. I have seen photos of my annie that were taken during surgery, and showed just how thin and fragile the artery was. My doctor told me it would only have been a matter of time before my kids came home and found me dead on the floor.

The stress of having a time bomb in your head is so huge - you are afraid to sneeze, to well, get intimate with your partner, to run, to strain in any way. And even if you are sure you haven't stressed your body, the fear of it happening spontaneously is still there.

I guess what I am saying is that it is something you don't have any control over - and for me, that was not an option. I felt that the reason they found it was so that they could fix it.

Having said that, I know there are lots of people who go through their whole lives with an annie and never even know about it. I know that there are lots of board members here that just monitor their aneurysms.

My annie was in a place where coiling was not an option, and for the doctors to recommend one procedure over another, I have to wonder if it is not the same reason. Clipping, although certainly more invasive, and with a longer recovery time, is more of a 'permanent' fix. Sometimes coils have to be refilled and the ongoing monitoring (angiogram) is not without risk in itself.

Do you trust your doctor? That is essential, and the surgeon you get should me someone that you have loads of faith and trust in. When you do, be guided by what he/she says, if you need to, get a second opinion. After all, they want to have a high success rate too.

Please know that I am thinking of you, and ask your wife to come and join us as well. I don't doubt she has lots of questions too.

Let us know how you get on.

Cheers

Lyn :)

[ChrisC]

Fapp, I too, was a "discovered" aneurysm. I could not wait to have it fixed! I'm also in FL and had my surgery at University of Miami, Jackson Memorial. My physician was Dr. Roberto Heros. My interventional neuroradiologost (who did the coiling) was Dr. Wakhloo, but he has since moved to MA. The doc that I last saw for my final angiogram was Dr. Zauner. All of my docs were phenomenal. Shands is also a great place, as a matter of fact, a recent poster mentioned Dr. Hoh at Shands, and seemed to be very impressed with him. Shands was an option for me too, but our son lives in Miami so we went there.

I had a clipping attempt, which didn't work out, and then 2 weeks later, was coiled successfully. They found your wife's aneurysm, like Lyn said - to fix it, and I would go with what the docs recommend. IF you trust them, fine, if not, then find one you absolutely trust. Don't put off what can help her because of risks.......there's risks in everything you do - from crossing the street to having brain surgery. The effects of a rupture are devastating too. Find what your comfortable with. Get 2 or more opinions if that makes you feel more confident and informed; but let your wife and the physician make the decision. It's not easy at ALL living day to day knowing that you have a time bomb in your head - I did it for 4 months - between diagnosis and surgery, and I wished every day that the surgery was then and not later. I do not regret for one second that I had to have 2 surgeries for my annie, and I would do it again in a heartbeat if I had to.

I wish your wife the best and I will keep her in my prayers. Let us know what happens.

Chris

[jordal]

welcome, glad u have come to this forum, its very helpful. i have a 5mm anniebehind my right eye. they found it in may this year, i waited til aug to see neuro surgeon he then told me that he believes it has bled already (y i was in hospital and complications after) he also said if it has bled once it will bleed again. he alsotold me that 50% of people who have hemorage die before they even reach the hospital, and he wanted to do some more tests to figure out what opperation will best suit me personally, stability and exact location of annie. i see him again nov 6 for results.
iv been living with this ticking time bomb for 5 monthes now, and im kinda glad i had to wait because it gave me the oppertunity to research and think. if i have a choice i will get mine clipped. im only 30 and have alot of life left to live... especially with my 2 boys 6 and 8 years old. i want to know its fixed. iv been to the hospital twice since it was discovered. i am a headache and migrane sufferer and when i have a terrible wont go away headache it scares me so much its not even funny. im alsays thinking, today? this week? this month? when? if? it freaks me out. even though i dont always show it it scares the crap out of me and i think about it all the time. if i get it clipped i have confidence knowing im allowed to live. i wont have to have spinal tap every time my really bad headaches wont go away. i personally need the perminance of a clip. the surgery wont be as bad as the antisipation or if the annie severly ruptures. nothing in life comes easy but to work twards my peace of mind and future it is totally worth it. if your wife is serious and making an informed decision, u should try to support her and think how ud feel if it were you how would u feel and how do you think she would react?
the best question u can ask a n.s. in my oppinion, is what would u do if this was your mother or your child... how would you treat them?
all the best to you and your wife, i hope everything works out the best for both of you... dont forget... right now you need each other more then ever. jordal

[annie2105]

:eek: Hi! My own personal experience with coiling was poor and it had to be clipped anyway. I am 26 now and I listened to my doctors who said "you are too young...clip it". I am glad I did. Find a doctor you trust and listen to him/her...that is my advice.

[Craig]

I just want to jump in and say there is an argument for monitoring. The big giant heads are the best guys to spell out the pros and cons of surgery vs. monitor and help you with your decision on what to do. In my case I'm monitoring a 5.2mm uncoilable aneurism presently and went through a rupture end of 2004. My Dr's suggesting that the risk of rupture is less than the risk of the operation for me presently. Every situation is unique with many other factors having to be considered. I get the impression that it's easier to clip when it's a little bigger, but I'm not sure it's true. I expect if I pushed him he would operate but I want his educated opinion to weigh in strong. It definitely takes a unique personality to live with the time bomb ticking and it's not easy but I'm managing so far. Every person has to decide for themselves with there medical pros but there is validity in monitoring in some situations. There are days I think I'm crazy since I expect it's inevitable it will have to get done sooner or later. For me, for now, I'm monitoring per my Dr's advice. It's not for everyone that's for sure. I actually think I'm the exception for being able to monitor relatively comfortably - at least for now... I reserve the right to change my mind!


Craig

[Happydaze]

Welcome -
I'm sorry about what you are going through but I'm glad you found this board-there is alot of good information here. I had a rupture and a coiling in 2003 and I have another small 3mm one that they are currently monitoring every six months (so far-no change). The best advice I can give you is exactly what you are trying to do. Find a nuerosurgeon you trust and get his opinion on the best treatment and then make your decision. (I'm not in your area so I can't help you picking a good NS) I'm not crazy about having one monitored but it has been explained to me that this is best for now. I absolutely trust my NS but I also have no problem asking him questions and making sure I understand exactly the whys and wherefores of his decisions. Let us know how everything goes.

__________________
Happydaze

[FireflyR7]

:o Hi hun and I am very sorry about your wife!! I know that you are going through so much right now emotionally just knowing. I am sorry you guys are having to go through this too!! I know how she feels, I went through a lot before I got a diagnosis& surgeries. My name is Tricia, I am 47 now (F). Married 18 years, I was a firefighter until the day I had a ruptured aneurysm with no warning 7/79/05. My husband Bernie has been a F.F. for 33 years & he is also Leutenant. He is also a full time EMT.
Anyway, I was lucky to survive because mine went mis-diagnosed for a while, LONG story! I went to the ER 3 times before I finally found a NS and didn't have my first surgery until Sept. 05. I had a stent put in then, I threw a clot & essentially died for a moment. So, I had to have the coiling done in Oct. 05. I am very lucky to be here, but mine is a rare incident. so I have a exstended recovery.
My aneurysm was only 4mm after rupture though!! I worry when I read post that say they are too small, keep an eye on them??? I don't think there is one too small!! :confused: My NS told me that he was amazed I survived before the surgeries?? Mine is next to my left optical artery, 4mm, stented & coiled through my groin artery. I did not have to have a crainiotomy!!

***Finding the right surgeon is the most important thing!!! See which hospital has the best brain aneurysm facility and find a Dr. through them. You want one who does this a lot. You want one who is going to explain everything to you and talks to you and listens to your questions and concerns!! This is all my NS does!! They are vascular specialist. My NS gave us his cell & home phone number. He showed great concern, was honest and very genuinely caring. Don't get one that treats you like he is doing you some favor, he is working for you!! You have a right to make informed decisions and have a good repore with them!! This is not some simple proceedure!! Try to find one with a great reputation, ask for a patient recommendation to talk to. Mine is awesome!!! The right Dr. makes a huge difference in the whole process!!!! She deserves the best!! This is going to be someone you will be spending a lot of time with and putting a lot of faith into, she must feel comfortable with them!! I hope I have been helpful??? I will keep you guys in my prayers!! Please keep us informed!! God bless you both!! If she need someone to talk to, I am here!! Love Tricia / Firefly :cool:

[Scared and depressed]

Dr. Hoh at Shands Hospital in Gainesville did my ruptured aneurysm on my brain stem - he was the best I could have asked for. I live in Tampa and the trip up there was the smartest thing I'll ever do. I had 5 coils put in and was reading the newspaper the next morning. Truly. 15 days I was home. I would recommend him to my closest of friends. Good luck. Margie

[cindybear]

defiantly get it fixed, if you have a choice, I'm in the small group that can't. We are inoperable,,,When my monster started to grow, Yes, we attempted a surgery- stent with coiling - Nuerosurgeon started to put in stent amd wham-Had a stroke...So they gave me lots of blood thinners..And finnished puttung in the stent..It didn't even cover the distance of the aneurysm ( I need another stent placed ) but It was to riskt to go any further,,They stopped my surgery to save my life...That was allmost 2 years ago. I stiil have my monster..Have had allmost 6 years...It is not any way for anyone to have to live..Get it fixed, Then let it be a memory, Not an everyday agony..Hugs, Cindy

[fapp]

Thanks to everyone that has shared their personal stories and perspectives on treatment....very very helpful. Lyn, your message really hit home with me and my wife related to your comments immediately. Craig, I started out in the monitoring camp and have slowly been converted to the "take care of it side". The studies suggest that doing nothing with the small ones is less risky than surgery so I understand the logic in your choice. I really don't know what I would do but I will support my wife with her decision to have it clipped.

Margie, we have not met Dr. Hoh but have talked to Dr. Lewis at Shands. Lewis only does clippings and Hoh does clipping and coiling. Lewis said he clipped 140 last year! Has anyone used Lewis?

Chris, I noticed that Roberto Heros in Miami is in the book of America's Top Surgeons. I actually tried to contact his office but ended up playing phone tag with his office.

We are looking at maybe getting a 3rd opinion out of our region and have considered some of the high volume hospitals like Johns Hopkins in Baltimore MD, Massachusetts General, and Columbia-Presbyterian in New York. My wife doesn't think it's practical traveling too far and would like to stay local. Any thoughts or experiences with traveling a distance away from home for a clipping?

Frank

[mercylee]

I'm from FL also
Just like ChrisC, I had my surgeries at Jackson Memorial in Miami.
As funny as it sound, our story is pretty much the same and we live like 5miles from each other.
My annie was (is) huge. I had a clipping attempt, but Dr. Heros decide not to perform because clipping would of been life treathning. Two weeks later I had a successful coiling perform by Dr. Zauner.
I'm since doing very well.

Wish you the best
Mercy;)

[Craig]

I can understand your reluctance to monitor. I'm presently monitoring after my Dr's advice to do so but I am kind of reluctantly. I chose not to push for the operation after thinking it over for a while. I get the feeling he would of attempted a procedure if I expressed a strong wish for him to do so. It's not easy to have the ticking bomb all the time but one day at a time helps. 5.2 mm is not huge but having had one rupture already makes me a little uneasy. If his decision to suggest monitoring has been influenced by problems within the Ontario Hospital Insurance Plan I would be most dissapointed. Hopefully his decision is based strictly upon medical risks and benefits rather than funding or availability of services. I really have no way of knowing for sure. I do know that there has been no growth in last 6 months so perhaps the period of growth has stopped. I wish you success with your health struggle and hopefully you can both say all fixed soon.

Craig

[Nancy D]

I too have a 5mm unruptured aneurysm in my middle cerebral artery. After talking with the experts and learning as much as I could, I came to the decision to have the surgery. Everyone is different, so your case is unique, but let me tell you my thinking in my case. I'm 57 years old (still considered young). The younger one is, the greater chance of having a rupture in one's lifetime. Your wife, at age 36, is more likely to have a rupture than I am at age 57. I only have 20 years left in my life, whereas your wife has 40+years.

I also considered that I would do better medically having this surgery at age 57 instead of 67 or 77. Another consideration, if God forbid I loose some function, my recovery would be better at age 57 than 67 or 77.

I totally relate to your wife's concern about having the ticking time bomb. It is real. Every twitch, every sinus headache, every sneeze, cough, moment of stress is the thought "is this it?" Your wife is probably thinking; should I drive on the freeway; is it fair to the other drivers? What about driving with the kids? How far can I travel from my Doctor? When we plan a vacation, the first thought is not where do we want to go, but where is the closest hospital. Do they have a major neursurgery department? Are neurosurgeons on staff?

It is true that your wife's aneurysm may never rupture, but she will ALWAYS be thinkig it might. The outcome from a rupture is very devestating. Remember those you hear from on this message board are the ones who survived. Sadly, we don't hear from the ones who didn't survive.

[agt]

Hi Frank,

I had mine clipped at age 44. I realized that I couldn't live with the unknown. I was also told the coils sometimes had to be redone and I didn't want to have to have treatment a second time.

I'm glad I did have the clipping because the doctor said my artery was in really bad shape when he did the surgery.

While the procedure is invasive, I was up and out of the house 2 weeks after surgery and back at work at 8 weeks.

The worst part of it for me has been the emotional side - wondering if I'll get another and wondering if every ache and pain is something serious.

Good luck with whatever you decide and as others have said, find a doctor your trust.

Anne

[ben]

Before my father had surgery, we went to www.ratemds.com to see if there were any ratings on his surgeon. The doctor had some pretty decent ratings. I saw that there were quite a few doctors who put their patients through some very difficult experiences.
Good luck!

[Lyn]

Hi again Frank

The hospital I had my clipping in was five hours drive from home - I live in country NSW, Australia and it was the nearest major hospital. The drive was huge, and really uncomfortable on the way home, but I would have travelled any distance to have the fantastic surgeon I had.

But, the choice was not mine to make. If you are planning on going further afield for your surgery you will have to find somewhere close by to stay while your wife is in hospital. Also if you have kids you will need to have someone who can stay with them. I stayed in hospital for nearly two weeks, although my only complication was a little heart scare and small cognitive problems. I think the doc kept me in longer because I lived in an isolated area.

Bottom line? Go with the doctor you feel most confident with - this is a life changing event.

Take care and I am glad you are both getting your feelings and ideas sorted out.

Let us know how you get on

Lyn :)