Not what I expected

I went in yesterday to have my aneurysm coiled but it didn't turn out the way I expected. When I was woken up, I was told I had an aneurysm with no neck (I think its a fusiform aneurysm). My dr recommended a newer type of stent that will be approved in the next few months or glue and a balloon. I'm going to met with him in his office to discuss these options in more detail. Does anyone have any knowledge or experience with any of these? Its sounds more experimental to me. I'm depressed and confused and feel like I'm at step 1 again.

Joanne Cirincione

Joanne,

Joanne,
You are educating me on the new procedure regarding the glue/balloon. Please let us know more details on this. I think you will find that many on here have stents - including me - to protect and keep in place the coils. I’m surprised that they expected to do the angiogram immediately followed by the coiling. Don’t be too let down that you didn’t have the coiling done at the same time as the angiogram. My doctor had explained to me that the angiogram is a diagnostic tool used to determine the shape/size of the aneurysm prior to deciding what surgery would be best. Now you and your doctor know what your options are.

Thomasina

Joanne,

Hey, I just underwent the platnium coiling 2 weeks ago. Two of the best 70 docs in the USA who do the coiling, are very experienced in the ONYX procedure, and do the “brain stenting” are here in Ft. Myers, FL!! Less than a dozen major medical centerd offer the ONYX procedure. It is NOT new. ONYX is a putty-like substance used to fill in the aneurysm preventing it from rupturing. Look UP and see another doctor for another opinion, if necessary. I went for 3 opinions. And to think, Indy doesn’t have one of this caliber! In fact, IU has been trying hard to get Dr. Mason; who did my surgery. Don’t think he will leave here.

Here is the contact info:

Cerebrovascular Specialists of Florida
Eric Eskioglu, MD
Brian Mason, MD
9981 S. HealthPark Dr., Suite 120
Ft. Myers, FL 33908

Phone: 239-■■■■■■■■

Fax: 239-■■■■■■■■

www.LeeMemorial.org

Will pray for you! Don’t hesitate to contact me! Sharon Wessler

Hi Joanne, when I had my two annies done, one was large and had a large neck, so I had the coils done and my Dr. also put in a stent…this was done April 1st. I don’t know what kind of stent your doctor is talking about, my doctor already uses stents when there is a large or no neck …

Joanne,

I feel your frustration. My coil that I went in for on 6/21 did not work. I have not heard of these but may when I go see my surgeon on the 27th of this month. As it stands now I will be having a craniotomy. Since this is my second anni, the first one having ruptured, I am not sure if I am a candidate for those. A clip may be my best option. Try to stay positive. Keep planning for the future! I went out and bought my 2011 calender and have been filling it up…lol.
Sherri

thanks for all your support!
Joanne

Hi Joanne,
I had aneurysm stented and coiled at Mass General Hospital In Boston Oct 30,2007.It had a wide neck so they needed to place the stent to hold the coils in.I have a smaller one, not treated.It is fusiform on one side and berry shape on the other,and small so not at a high risk for rupture.Have total faith in your doctors…they know the best treatment for you.I have felt great without any complications. Both my aneurysms are in the internal carotid arteries, in the cavernous part where they supposedly are more protected . Good luck to you.Maryann from Abington MA.

OMG…Joanne,
I have not been on in a long time kinda busy summer and to tell u the truth kinda wish this whole annie thing would just go away…
So u got to make options to think about…I still have not got my apt… yet…but i will…
What are you thinking now?? the dr at stony brook said the glue was an option also…not sure about anything
praying for you
Roseanne xoxo

Hi

I’m pretty freaked out. I’m having it coiled this Monday. Dr. Riina wasn’t comfortable with the glue. He said not many people are using it and from what I read it sounded even scarier to me than the stent. We’re gonna go with the original stent. If it doesn’t last, the pipeline ( the newer stent) will be available in the US by then and that will be an option if I need a second procedure. I wanted to have a second Dr. look at the angiogram so I saw Dr. Berenstein at Beth Isreal. My cousin knows the head of NYU medical center through his work and he said Dr. Riina is “an expert in the field” but this guy is world renound. I saw him last night. First he asked me if anyone suggested just observing it. (Out of 4 Doctors no one did) After looking at the angiogram he told me that he couldn’t see how they were measuring it at 8mm. It looked smaller to him but when he looked closer he saw how they were measuring it at 8 mm. At that point he said Dr. Riina’s approach was a “reasonable” way to proceede. I guess I should have said that I’m sure it’s reasonable but is that was what you’d recommend. My whole meeting with him left me more unsettled and somewhat surprised that he is considered so highly. He also said that there’s a possiblity that I’ll have to be on blood thinners for a very long time. No one else told me that. Wish me luck on Monday. Part of me feels that if I could go back in time & not have the MRI and not know about it I would. I’m sure people who have suffered ruptured aneurysms would give almost anything to find out before hand but it’s just hard to know the right choice to make when no one can tell me for sure that it will rupture & I have no symptoms from it. Sorry to sound so down. I do have faith in Dr. Riina you just caught me on a bad day. Let me know when you get your appointment. Thanks for your prayers.

Joanne

It’s been a long strange trip but I had my aneurysm coiled last monday and I’m so surprised at how good I feel. Went for a mile walk this morning after taking it easy all week. The headaches have all but subsided. Not feeling tired either but I haven’t gotten back to my regular routine yet. I pulled out my back in the shower a day after I got home from the hospital and that gave me more discomfort than anything else. My doctor feels things went better than he thought and he’s hopefull this is a permanent solution. Feeling blessed and cautiously optomistic until my MRI in 6 months. To anyone agonizing over whether to have this procedure or not, I recommended finding a doctor who is an expert. I can only attribute my recover so far to my doctor’s expertise.

Hope you are doing well.
I had my aneurysm coiled last Monday. I feel great & things went better than he thought. I would HIGHLY recommend Dr. Riina

Joanne

Hi, I am so glad you are doing well. I too was surprised at how good I felt after my coiling April 1st. I go for my 6 month angio Oct 6 th. and pray that everything is in place and all is well. My biggest pain issue I had after my coiling, was shooting pains in my head, which was really my scalp which I found out was from the vice that they put your head in to keep it still. I measured my recovering on how many tylenol I had to take in one day… Good luck to you and say a prayer that my 6 month check up is a good one.

You are in my thoughts and prayers. It must be so unnerving as the day approaches. Good luck in October.

Joanne

Joanne, I had an aneursym rupture on 03/19/2009. I was flown to University of Maryland Medical Center in Baltimore. The doctors coiled my ruptured annie and discoverved another two aneursyms. They were able to coiled one of the remaining aneursyms. The other aneusym would be closely monitored. I reached my one year marker and went through a battery of test and a MRI,MRA and CTA. It appears that I have developed an additional aneursym since my original DX. My doctor said these new aneursyms were wide neck and not able to be simply coiled. He suggested a stent that was not ready for release for use by the FDA. He felt the stent will be available soon but not certain when. I should hear from him this week. My doctor gave me product info on the stent. It is called the Cordis Endovascular Reconstructure Stent or the Cordis Enrterprise. The waiting is maddening at times! As a result of my rupture, I had to resign from work because of disability ( Jan.1, 2010). I was a social worker for the state of Maryland for 32 1/2 years. I have had to “change my game…” in retirement. These situations are frustrating, confusing, and yes, depressing! I am grateful I am alive and grateful you are alive! Sometimes in life we repeat Step 1many times over. The good thing is… we are here to share our fears, frustrations, concerns and love.

That was very inspriring and uplifting! Thanks for the positive outlook!

Hi Joanne, Ta
I hope that things are going well for you. I had a ruptured annie in 2005. That was the first experience I had with an aneurysm. I was seen for a follow up angiogram in April of this year. The angio showed a new aneurysm. I was scheduled to have this coiled in July. When I came to in recovery I as given the devastating news that this aneurysm coil would not take, the neck of the annie was just too wide for the coils to adhere to anything. I immediately began to cry because this was not the outcome I had hoped and prayed for. A week ago I went in and had this new annie clipped. While they were in there doing that, they located another small aneurysm. So they put a clip on this one also. I now have 3 titatium clips in my head. I am glad that they were able to find that additional annie and take care of it. Everything happens for a reason. had they just coiled my 2nd annie, I would not have known about the 3rd. Now I have all annies accounted for and clipped for the time being. I do not know what the future holds for me as far as my health goes. I do, however, know that I can make choices still. I choose to continue my life as planned. I will finish my Master’s in nursing program and work for as long as I can and hopefully make enough money to be able to retire at 60. That is my long term plan. Plans are meant to be flexible and my change throughout time but the ultimate goal is still the same. It is okay to be revisiting step one again. Everything will work out the way it is supposed to but maybe not in our frame of time. I hope you can step aside from your fear and uncertainty and find peace with what it happening to you. I will keep you in my prayers. Keep in touch :slight_smile:

Thank you for your prayers,encouraging words and wonderful way of looking at things. I’m sure it will help you in your recovery. I had my aneurysm coiled on August 23. It went better than expected and my Dr. is more positive about the possibility of this being a permanant solution but we won’t know more until my MRI in 6 months but for the time being I’m not thinking about that and just trying to live my life to the fullest that I can. I feel fine & I’m off Plavix in a week and look forward to celebrating that milestone. This ordeal has left me with a greater appreciation for life and the things I am blessed with. It sounds that your experience has done the same for you. All the best!

Joanne

I had the coil procedure done five years ago after a double hemmorage but at my last angiogram they did in July 2008 the doctor recommended I have the procedure done with the glue. It was not available at that time but would be in a few years. That time is now and I am a little nervous about having the procedure done. I also have the aneurysm with no neck. My doctor told me if I was in my 70’s he would leave my aneurysm as it is because it has remained stable but he feels I am too young for it to stay as it is. I guess before I go into this procedure I want to know the pros and cons. I had went into my last angiogram with the idea that I would be able to put this all behind me if things were stable but that does not seem to be the case. I can totally understand how you are feeling Joanne. I am thankful for the doctors and the new procedures that come out to improve our health but it is still scary for us who are facing it.