Brain Aneurysm Support Community

New Treatment Options on Horizon

In 2005 I was having localized head pain and eye issues. The Dr. attributed it to stress due to life events. I felt it was something more and continued to complain until he ordered a CAT scan. They immediately sent me for an MRI/MRA and I was referred to a neurosurgeon. They found a large right supraclinoid paraophthalmic aneurysm. I had successful endovascular coiling done in Jan. 2006. Recovery was slow but steady and thru the years I had follow up MRI’s and well as angiograms. On my last test they found it had begun leaking back into the aneurysm. This month I had another surgery, I entered into a clinical trial for F.R.E.D. (Flow Re-Direction Endoluminal Device). Basically a flexible stent that goes over the opening of the aneurysm designed to eliminate it completely. Surgery was again a success, although I had an incident by not responding to the blood thinner and was taken back in for another angiogram. I left the hospital the next day. I go back in 5 months and if all is well it will be gone (it should shrink over the coils). I urge everyone to keep up-to-date on new developments. Here’s hoping for good results! http://www.bafsupport.org/profile/Vicky

That’s great Vicky, hope all continues to go well for you, keep us up to date with your progress :slight_smile:

Thanks for this! X

Hello Vicky,
Im sorry about your discovered aneurysm, but Im glad every thing is working out. After your surgery in 2006 , how long after did your annie started leaking? Did you have any symptoms to lead that conclusion?

I had a Flow Diverter inserted on March 25th! I had a sub arachnoid aneurism (4") burst in the middle of my forehead on Jan. 4th. Almost a year ago. They treated it with the coiling technique. I went on Plavix (blood thinner) on March 22, the Flow Diverter procedure was March 25th. I and stayed on Plavix until I had my follow-up angiogram on Oct. 21. Everything checked out fine and I was allowed to stop taking the Plavix. I will have another angiogram in 6 months.
The Flow Diverter is cool. It looks like a tiny slinky… I held one in my hand! I’m so thankful we are benefitting from these new “inventions”!

We moved and I had to get a new neuro Dr. so, it was found on a routine scheduled MRI. He, however, had a "let's wait and see what happens" approach. What kind of Dr. says that? I immediately contacted my old surgeon who referred me to a great one at MUSC in Charleston, SC. He was amazing........got me in right away.


Knowing said:

Hello Vicky,
Im sorry about your discovered aneurysm, but Im glad every thing is working out. After your surgery in 2006 , how long after did your annie started leaking? Did you have any symptoms to lead that conclusion?

Does anyone know how long this technique has been in use? I have an unruptured 4mm in my right internal carotid artery. It's a bit tricky as it has a wide neck so would need to do coiling with a stent probably...Discovered August 2013. Decided to watch and wait with yearly MRIs. But, if new techniques are getting well established maybe I wait another year or two...everything is so fast! At this point one specialist says do the procedure the other says watch and wait. It looks like the risk of the procedure is about the same as the lifetime risk of the rupture so there are no clear answers in my case.

What great news! Thanks for sharing it and wish you continued healing.

F.R.E.D. is still in the clinical trial phase in the US, I think they started testing in 2012. As of yet, not FDA approved. It has been more widely used in Europe. They are still recruiting for the trial (https://www.clinicaltrials.gov) You can find numerous articles on the web with helpful info.

Petra Bignami said:

Does anyone know how long this technique has been in use? I have an unruptured 4mm in my right internal carotid artery. It's a bit tricky as it has a wide neck so would need to do coiling with a stent probably...Discovered August 2013. Decided to watch and wait with yearly MRIs. But, if new techniques are getting well established maybe I wait another year or two...everything is so fast! At this point one specialist says do the procedure the other says watch and wait. It looks like the risk of the procedure is about the same as the lifetime risk of the rupture so there are no clear answers in my case.

Vicki,

Thanks for sharing your story. It has been three-years since I had my craniotomy surgery for an aneurysm located on my left opthamic artery. Life is a blessing. I wish you healing - You are in my thoughts and prayers.

Vicky,
Thank you, thank you, thank you for sharing! I have had a very similar experience with ruptured subarachnoid Jan. 2006 and FRED in 2011. Had to fight insurance to cover FRED and now I am now medication free except for aspirin and doing amazingly well. I still cannot believe that insurance only wanted.to cover an invasive craniotomy and not FRED at the time. Here’s to continued successes and developments!!!

Good to know - we have started getting in medical bills and it doesn't look as if it is covering the amount it should. How did you solve that?

Thanks for the information. And very glad to hear you're feeling better!

I hate insurance companies - they can be so manipulative. There are usually programs in every state (and sometimes, as in the case in MA, in most counties within the state) that help consumers find help with doctor bills and insurance. In the case in my county, there is a program at the local hospital. I would look to see if there is one available there (call the hospital financial office to inquire).

State representatives and state Senators also usually have someone on their staff to help with insurance problems - or at the very least they can refer you somewhere. I wish you luck!

Thank you for posting info on FRED. It's amazing how so many of these devices have been used in the UK way before the US. Take care,

Sherri


Vicky said:

Good to know - we have started getting in medical bills and it doesn't look as if it is covering the amount it should. How did you solve that?

Vicky, beside the great information Sherri provided, call your insurance company and find out why. My last coiling was a nightmare as the hospital billed me for the full amount. I finally called my insurance carrier and was told I was not responsible for any of it as the hospital forgot to call in for the okay. However, my company doesn’t require prior approval. Nightmare resolved by just a few days work between hospital, employer and insurance company!

I am not sure about FRED but it sounds a lot like the Pipeline Embolization Device from Coviden (http://www.ev3.net/neuro/us/flow-diversion/) approved in the U.S. 3 yrs ago. This PED was used on my Annie (front communicative branch) 2.5 yrs ago. I have had annual angiorams and now the Annie is completely gone. These "little slinky devices redirect the blood in the artery bypassing the aneurism. The tissue apparently just slowing disappears without blood flow. These are great for large aneurisms. My annie was large so the surgeon coupled the device with coiling. The entire procedure is done intravascularly through the groin. My insurance covered all, just the device was $20,000.

A year has passed after F.R.E.D. was placed and I went back in for an angiogram to see if all was working as planned. Happy to report that it has done exactly as it was intended and my anuerysm is no longer taking in blood and is 'shrinking' over the coils. Apparently the clinical trials have gone very well for those of us lucky enough to have it placed. No real side effects and good news all around! Hopefully this procedure can become common-place as the surgery and recovery is much easier.

Great news Vicky! I am doing the happy dance for you!

just wandering if this has been used in canada yet?Haven't heard of FRED but there is so much i don't know and i am sure my neurosurgeon does,thanks



Michele Miller said:

Thanks for the information. And very glad to hear you're feeling better!

Not certain where it is currently being used...definitely worth checking with your doctor. I have had coiling and F.R.E.D. done and there are noticeable differences with the surgery and recovery. It's new but, well worth it!