How our Group has Grown!

Hello my fellow PED recipients and soon to be PED recipients!

As you can all see, we are now 20 members strong and I am amazed that just a short time ago, it was me and Giovanni in the Group!! Times they are changing fast!!

I just wanted to welcome all the new Members to our elite group and encourage them to post questions, feelings and whatever comes to mind so that our members can help them by sharing our own experiences with our PED surgery stories.

As most of you know, I was the 7th recipient of the PED in the PHiladelphia area back in June, 2011 just after it was FDA Approved. Giovanni, who lives in Italy, has had the PED for quite some time as they approved it overseas well before the US did.

My NS, Pascal Jabbour, who is with Thomas Jefferson Hospital for Neurosciences is one of 6 surgeons who are proctoring the PED surgery across the US and I told him when I spoke with him last week that that info gives me bragging rights!!! He laughed and said brag away!! Chances are 1 in 6 that Dr. Jabbour has taught your surgeon how to do the PED surgery! How's that for bragging!!

As you all may know, the PED was approved for use in the US to help out the millions of people with annies that were inoperable due to a wide neck/mouth or because of its location in the internal carotid artery area. I see that it is already extending to different uses outside of the ICA and that just makes me so happy to see that others will benefit from the use of the PED. You can all read about the original FDA approval of the PED here http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/DeviceApprovalsandClearances/Recently-ApprovedDevices/ucm252130.htm

I for one am so thankful that the FDA made their approval on April 6, 2011 as my annies were discovered on May 25, 2011 and my PED surgery was on June 8, 2011 after an attempt at coiling my 9mm right ICA annie failed due to its wide neck. One night stay in ICU and home the next day and my surgery was a "success".

I am scheduled on Tuesday, December 27th for my 6 month follow up angio to check ont he stent to make sure it's doing its job and to also check my left side 3mm ICA annie to make sure it's not growing any. Hopefully, as I told Dr. Jabbour last week, I would love to have him lean over that bed when I wake up and tell me my annie has occluded and it is gone and the PED did it's job!! That will be the best xmas gift I could ask for!

I encourage everyone to share their stories both mine and Giovanni are detailed at the beginning of the forum.

BAF Support saved my life... I was a lost soul searching for answers I might never find until I found BAF! I hope that this Group will do the same for each of you!

Happiest of Holidays to all and best wishes for continued healing to everyone!
Linda

xxxxx

I had 4 PED's in Dec 09 after my Dr got FDA compassionate Use approval, Mayo Clinic was doing trials on PED's but I was too late so Dr had to ask for special approval. Aneurysm (11x31mm) was gone at 6 months! Mine was internal carotid and a few months after Plavix was stopped I experienced intermittant blindness in right eye for a few weeks, blood clots were stopping blood flow to eye, and after Plavix restarted vision is good again. Chronic migraines and neuropathy they can't figure out still but aneurysm is GONE!

Wow Rick that is awesome! You are indeed a true survivor! Thank God you were able to get compassionate use approval for what has become the new life saving device that has saved us all!

It's interesting that regarding the clotting issue that you had. Are you now still on Plavix and if so, will you have to remain on it the rest of your life?

It's a great feeling knowing that your annie is gone isn't it? I wish I could have recorded by NS saying it's gone so I could replay it over and over!

Best wishes for a continued recovery!

Linda

HI Rick. I was wondering if you had any migraines of neuropathy prior to your procedure?

Hi Stephanie, No migraines or neuropathy prior to anuerysm, mine was huge and hitting the trigemenal nerve behind eye. Dr's think it may be permanent nerve damage? Trying everything and only thing that gives me any relief is Botox! Plavix has burned ulcers in my stomach and duodeum, trying to figure out how to manage that too. The pipeline 100% fixed my aneurysm and it is the BEST solution for inoperable aneurysm's!