40 year old Female, have had 2 months of vertigo, dizziness /aura sensations, left eye pressure,etc. went through all the ENT testing, labs are normal, eventually went and got an MRI/MRA and have a 4mm and a 7mm extradural internal carotid artery aneurysms. Just saw a specialist and he suggested a PED, in research mode, have 2 little boys and kind of in the freaking out phase I guess. Took me 3 weeks to get an appointment want to get more advice and second opinions. He says he can't rule out that the symptoms are unrelated to the aneurysms since he has seen many patients with similar symptoms. I swear they are related even though every other practitioner seems to think they are asymptomatic. Just frustrated and want some answers and suggestions on some next steps! Any advice?
Hi Denise and welcome to BAF,
I invite you to join our PED Group, which can be found here: PED Group. We have loads of stories and info from members who have had their PED surgery. I had my PED surgery over 15 months ago just after the PED was FDA approved for use here in the US. I also have a sister who has gone through a clipping surgery for an annie and between the two of us, I much rather would have had the PED. It was not nearly as invasive as a clipping.
Please join the PED Group where you will get many answers to any questions you may have, and again, welcome to BAF.
Best wishes,
Linda
Thanks Linda, this is so new, not sure whether to treat or not or whether to wait only knowing it will get bigger and I will get older. I am eager to learn more. We live in Charlotte, NC and Joe Bernard is the Neurosurgeon I did my initial consult with. He said he one of the 15 people that travels the country teaching other physicians how to perform the PED procedure. I was still in kind of a shock state so to speak when talking with him and have of course so many questions since then. Where to go for a follow up? When and if I should get something done? where to go, who to go to, etc? I am really glad I have this forum to at least vent some frustration and hopefully get some answers. I know it could be a whole lot worse, was afraid I had a brain tumor. He did say that I would not be a good candidate for clipping for the location, so I am just wondering if the earlier and the smaller in size my chances of a better outcome are for PED.
P. S. Meant to say unruptered, but can't seem to edit my discussion title:):)
http://www.bafsupport.org/forum/topics/finding-an-unruptured-aneurysm
A lot of us with unruptured annies were told that our symptoms had nothing to do with our aneurysms. Read the thread mentioned and I think you'll see some similarities. If you are thinking of getting the PED, do join the group that Linda linked -- you'll find a lot of support from those of us that went through with the surgery, and lots of threads for you to read through for advice.
Tara
I had an unruptured annie 10 yrs. ago. I went to Emory in Atlanta and had clipping done because they had just been doing the coiling procedure and I wasn't too sure about having those in my head,although I do have screws and a titanium clip. With any procedure you are not sure of the outcome as you can see on this site. There are good recovery stories and not so good. If you want a good neurosurgeon in Atlanta Dr. Dan Barrows is excellent in his field. Emory is a teaching hospital and I had excellent care there. I am from Charlotte but live in Anderson, SC now so Emory is closer for me. I chose clipping because I knew once it was clipped I didn't have to go once a year(which is what they were doing 10 yrs ago) for arteriogram. You just have to do what you feel in your heart is best for you. You have come to the right place. There are such good people on this site to inform and pray for you. Just feel at ease that they found them and you like many of us who have unruptured annie's are most likely still here for a reason. I too had dizziness off and on for years before mine was found. Mine was behind my right eye and was not found by MRI/MRA. People on this site are living with annies that have not been fixed yet. I know it is freakie to know you have something like that in your brain. Hang in there and try not to worry.
What a small world, Denise, my doctor, Pascal Jabbour, is also a proctor for the PED. He and his team at Jefferson Hospital for Neuroscience in Philadelphia have lead the country in endovascular surgeries, including the PED. I received my PED just about 5 weeks after the FDA approved it for use herein the US.
When you read our stories in the PED Group, you will see that most of us were back to work, between 2 to 3 weeks after our surgery and the worst part was lying flat for 4 to 6 hours after the angios and after the surgery. Some had minor pain at the groin area which is where they put the catheter so it can go up the femoral artery and into the brain.
I took the plavix and aspirin for 10 days before my surgery, then for 6 months until my angio then I went off the plavix and will continue the low dose aspirin for life. At my 6 month angio, my NS said that the PED was doing its job and that my annie was fully occluded. Was great news. For follow up, I will have an MRA every year to check the PED and also because I have a 3mm annie that is being watched for growth. At my 1 year MRA everything was wonderful, and no growth on the 2nd annie!
I had absolutely no symptoms, but rather went to the ER for some arm pain and my annies were found because they were trying to find the source of my arm pain. Started at the top of my head and got no further before they put me into an ambulance and sent me to another hospital.
Both of my annies are in the internal carotid artery (ICA) and both close to my ophthalmic artery so clipping was not an option for me. Coiling failed when they did the first angio because my annie was wide-necked. The PED was my only other option, if not for that, my annie would have been inoperable!
If you need any more info re the PED, post it in the Group and I promise you will get tons of answers!
Denise B. A very familiar story. Even after my PED was placed and I had several symtoms, the doctors always want to say it is "not related to the PED".."not related to the aneurysm". It can be frustrating and your mind is so busy looking for answers it doesnt take time to relax. Stress and anxiety is the biggest hurdle. In my experience I dont want to be told anything is stress related, but I will have to admit I am full of anxiety and my thoughts move at 100 mph. I was diagosed 10 years ago with a 7-8 mm, but it was a 10 when they went in to see it on the angio. It was a wideneck aneurysm so I could not do anything until the PED. I could have waited, but everyday I was getting older and I couldnt stand that it was in my head lurking, waiting, bugging me EVERYDAY! I went to JohnsHopkins in Balt. and I am fine, I havent had my 6 month to see if it is gone. Plavix is my biggest issue, it makes me a little sick in my stomach, and the bruising is bad.Ask me anything Denise. I would ask how many PED's you dr. has placed.
Hi Denise, I had the PED placed in Apr, 2012. I was having really bad head pain on the right side.. it hurt behind my ear and my eye.. The Doctors also told me they could not for sure tell me if it was from my Annie.. I had a 6X6mm Annie behind my right eye.. I still struggle with headaches almost everyday.. Some days worse than other.. I also have three little ones and it scares me to death... I would have it fixed just because if it ruptures it could be a lot worse.. Your young and you need to be here for your kids:)
Hi Denise,
I had the dizziness, vertigo, and then had a double vision episode, which sent me to the ER and the diagnosis of a 3.5 in my right carotid artery. After 2 angiograms and 14 weeks later the annie was filled with a glue like substance called onyx hd 500. However, my annie grew to 5.6 during the 14 weeks after discovery. The onyx could be an option. It has worked for me and saved my life. My annie grew very fast, not the norm, and it can't be explained.
This community is a great resource and will help you find information to make a decision or ask the right questions to your surgeon.
Karen
So glad you found us here! Lots of great info to be had here, and of course a great place to vent. It took me two months to go from diagnosis to treatment, and way too much red tape with my insurance, and I understand the madness of the waiting! Research all your treatment options, asking for personal experiences on each from folks here, and do what’s best for you. The PED is a great new option, with lots of great results reported right here! Remember too that all options have risks. Please keep us informed of your decisions and outcomes!
Good Luck ... Medical Professionals often they fix us...but don't help with the after~care...~ Colleen
I had the same symptoms last year, vertigo, ringing in ear, dizziness, went to ENT, then ran MRI, CTA with contrast and found out that I had Chiari Malformation and a 7mm aneurysm. We did the wait and watch for a year and just had my yearly follow-up. Nothing has changed still a 7mm aneurysm, but where it is located they would like to do Endovascular (coiling) can not do the clipping. I also went and got other opinions and will possibly get another. I have an 18 year old daughter and a 4 year old son. I myself freaking out, scared!! I earned alot from researching and several appointments. I know that wasnt much of an answer but I know it can be scarey.
when do they recommend PED?
"When is it used? The PED is intended to treat adults with large or giant, wide-necked brain aneurysms of the major artery supplying the front of the brain called the internal carotid artery.5 It is a less open (invasive) treatment, performed with the use of a catheter6 placed inside the blood vessel, compared to an open surgical procedure with the use of clips to block the aneurysm. It is an alternative to placing materials such coils or a liquid embolic to treat the aneurysm."
This is from the FDA's page. I know when I got it done the FDA was saying to use it only in aneuysms of 10mm and up, but mine was safely placed anyway on what they thought was a 7mm going in, but what turned out only to be a 5mm.
What made you decide to have the procedure done? I guess that is the ? Mine is 7mm ( I also have a 4mm on right ICA) and I know they say that is on the borderline on when to get treatment, but it is in the ICA in the Cavernous Sinus which they say they a lot of people usually don't treat. I am sure my symptoms are related to this and feel at first I wasn't going to do anything and just follow up with a MRA in 6 months to see if it has grown. I am also not a good candidate for Clipping because of the location so I feel that since I am only 40 and it it still relatively small and wide necked and most likely causing symptoms I should maybe consider the procedure. Just don't want to be one of those small % of bad outcomes
I suffered a TIA in my small town, was rushed to Johns Hopkins in Baltimore, and my neurosurgeon Dr. Coon told me the statitics for rupture if I left it untreated. He compared it to winning the lottery in a bad way. I have a two-year-old at home, an adoring and adorable husband, and a weimaraner, and I'm 42. I wanted to ensure I'd be around for a while. Dr. Coon also said that most folks that get the PED recovery extremely quickly (back to work in around 2-3 weeks), and though it was only approved in the US by the FDA this year, it has been used in Europe since 2006. Granted, I'm a teacher, I had this happen in mid July and had the surgery July 31st. If I only had the aneurysm/pipeline to contend with, I'm sure I would have started the school year, but the reason they found the aneurysm is because I had head pain on the opposite side of my head which currently is being diagnosed as trigeminal or occipital neuralgia.... though I really don't know if it's related to the aneurysm or not, things are getting better recently. Doctors are very confusing sometimes. lol In any case, I figured better fix this now at 42 than be 55ish or later because I'll heal faster now, and I'd worry if I didn't.
Thanks, so much for sharing your story, I may try to schedule something with Dr. Coon, My in-laws live in Baltimore and looked him up from other things I've seen on this website. Do you recommend him? Just looking for a second opinion. I like the surgeon here in Charlotte and think he is on top of things, just want some reassurance before moving forward. I know I am getting personal but are or were you a smoker, I tend to be a closet smoker, maybe 4-5 a day, and I keep beating myself up that this is why I am going through this right now. ugghh! I think the stress is going to make me have to get something done and the symptoms are not getting better, some days are better than others, but just want to be normal again. :(
Oh, also, my surgeon said same thing about 10mm for PED, did your insurance cover it even though it was less than 10mm? Also, where was yours? mine is cavernous sinus,(which I here a lot of times they won't do anything about, but I think that is when you are a lot older than us,think for sure its going to grow, right?) internal carotid artery close to ophthalmic artery (which is why I think symptoms are related) and he says clipping is not an option. Which is why I think as well, while I am young and it is small I want to get rid of it. I just think of the risks and think of what they don't know about the long-term affects of having the stent in our brain. what are the risks of it dislodging? etc. Sorry , I know major overload, major anxiety!
Yes, I would recommend Dr. Coon. He can come off a little cockey, but he probably deserves to be. ;) lol Just make sure you have a GP or someone local to help you with after care. Dr. Coon, and I'm guessing most/all surgeons, don't deal with this. Dr. Coon teaches others how to do this and has for some time. If I recall, and maybe Collen remembers, I think Dr. Coon said he's one of 6 doctors that were trained in Europe to do the proceedure and now flys around the country teaching others how to do the procedure.
Yes, I was a smoker. I smoked about a 1/2 pack - 1 pack a day before I found out I was pregnant, and then I started again last November, smoking around the same amount as you, 3-5 a day. I quit in the hospital the night of my TIA, and have only had one since. The mystique and the nicotine high are non-existant. I'm on Nortriptyline for my neralgia, and it is wonderful for quitting smoking as well.
Insurance did cover it, but you'll want to ask whomever your surgeon/and/or/the hospital is to look this up for you prior to your going ahead with the surgery.
My aneurysm was on the right opthalmic arterty, where the carotid artery branches into the opthalmic.
My husband was laughing over my shoulder with your posts... you have exactly the same concerns I had. Dr. Coon told me that the Pipeline is made out of a material that helps your brain to build an artery basically -- your arterial wall builds itself through the mesh of the pipeline and blocks off the blood flow to the aneurysm. The aneurysm then has no blood flow and over time starts to grow smaller and smaller until it disappears. There's a video somewhere on you tube: http://www.youtube.com/watch?v=2oksKBwYAKs Here it is. Watching this helped me significantly. I don't believe any have dislodged, but I have read that some people needed more than one placed due to mutiple aneurysms. You might ask that in the PED Group: http://www.bafsupport.org/group/pipeline-embolization-device-ped
Join it, there's quite a bit of info there and everyone's open to questions.
Also, go here: http://www.bafsupport.org/forum/topics/finding-an-unruptured-aneurysm I think you'll be surprised by the symptoms a lot of people have had that doctors say aren't related.
As for the risk, when I weighted it, I simply thought that I wouldn't want to be recoiled and I didn't want to risk having a long recovery time from the clipping. I'm the main provider in the family (hubby's a stay at home dad & webdeveloper), so I need to work to keep the insurance and the money going. ;) Ultimately you have to do what is right for you, and you'll know it when you decide on it.
Hi Linda,
I would like to join PED group, please let me know how. I have been scheduled to have 2 PED surgeries for my 3 annies on june 2nd and june 14th 2017 at John Hopkins for 4.2mm, 3mm and 2mm sizes respectively