To make a long story short, I went to the hospital for extreme vertigo. They found an annie 2cm in size on the left side of my head. I went to stanford for a second opinion and then 2 mths later for the pipeline procedure and when I woke up he said the neck was too wide for the stent and at this time the company isn't making bigger size. I thought the pipeline stent was made for the larger anuerysm? I did speak with the company and she said they make different sizes? So now he wants to do the balloon procedure and I'm very disappointed and nervous I've been dealing with this since April, I'm sure I'm not alone and welcome your comments.
Hi Louise...Glad you were able to get onto the "Main Forum"...you will see notes come in through the weekend...
~ Colleen
Thanks for getting back to me. I have 14 views no replies, yet! I've talked to the company and they infact said the pipeline stent can be made longer they fit into each other. Why not rather than sacrifice the carotid artery?
Hi, I too have one in Ica right side but mine is small, 5mm. I’m having mine coiled July 11th. I would look for a doctor that you are comfortable with. It took me 4 opinions before I found the right doctor for me. I’ll be praying for you.
Deanna
why are you not opting for the pipeline stent? thank you for writing me I've been going coo coo. I was in the hospital for severe vertigo and found this. Waited for a second opinion at stanford, he went in and said the neck was too wide. But the company said they link together in the artery, I'm confused, I would think that would be better than sacrificing the artery. Best of luck to you.
Hi, my doctor said mine is too small for pipeline. Pipeline was made for large aneurisms. I trust my doctor very much. I hope you find the right doctor for you. I’ve been dealing with this for 5 years.
Deanna
I wish you the best, I'm going to see the doctor again on monday and find out what he is talking about.
Hi Louise,
I have (now had) a right ICA aneurysm. It was 5.6 cm wide necked and my neurosurgeon filled it with Onyx HD 500 (liquid embolization). It has been one year today and the "glue" is sticking. I had an angiogram 2 weeks ago make sure it was still good. You might want to check out this procedure. It is used for wide necked annies.
Karen
Hi Louise, I have a 14mm left inner carotid aneurysm, mine was also found from severe vertigo. Mine had a 4,5 mm wide neck, they had to place two stents telescoped inside each other to cover the opening, one stent is 10mm the other is 12mm, so it is double thickness at the neck of the aneurysm. I am recovering quiet well. The stent I had was called an ev3 I don’t know if that makes a difference. I hope you get an answer soon. My thoughts are with you.
Hugs
Lynn
Thank you so much for the feed back I so greatly appreciate this.
Louise...welcome and prayers for your upcoming success...
I have images of my left internal carotid artery (L ICA) that I plan to publish...it reflects the basis for the design of the Pipeline...and, please remember that is my personal opinion with no expertise... it is the old "a pictue is worth a thousand words...yet, one picture will not tell the full story".
My 6mm saccular aneurysm did not have a wideneck; thus, it generates a high percentage of those 1000 words...it is something I have wanted to share with the Pipeline group...I need my tech tol load the image(s) to FB...
I pray that you have made contact with the Pipeline group...they have the tremendosu successes, the reasonable and the oopsies...
Prayers for your success...and that you keep us updated...
Pat
Hi Karen,
Remember me? I can't believe its been a year already. My doctor said he would coil or use onyx. He will make that decision when he gets in there. He said this because I told him I really don't like the idea of having coils in my head. July 11th is the big day. I'll let ya know.
Deanna
The glue, I'm one of those people who react to many things, make ups, adhesive, I get blisters, novacaine. Did they test you for the Onyx before using it? Everyone here so far has all had mm for size not cm accept for yours. I will put together a good questionnaire on monday and see what I can find out. I know Stanford is suppose to be one of the best, but I wasn't thrilled with my preop treatment nor afterwards. It remains to be seen huh? Thank you for your support.
Hi Louise and welcome to BAF,
I had my PEDs (pipeline embolization device) put in on June 8, 2011, over 1 year ago for a right side ICA annie that was 9mm and very wide mouthed. I myself have two PEDs which are telescoped together to cover the mouth of my annie since the coiling that was attempted failed. I also have a 3mm left side ICA annie that is a watch and wait.
My PED was put in about a month after the FDA approved the use of the PED here in the US. The FDA originally approved the PED for large, uncoilable wide-mouthed annies located in the internal carotid artery. Since it's approval, the PED has also been used by a few docs in the basilar artery. We have couple members in the PED Group http://www.bafsupport.org/group/pipeline-embolization-device-ped <<< which can be found here, who have had their PEDs telescoped, in the ICA and also in the basilar tip. We also have a few outside of the US who have had their PEDs for longer than most of us from the US. I invite you to join the PED Group where we have posted lots of information regarding the PED and its use and growth since its approval. As for me, my surgeon was one of the original to use the PED and he has also proctored many many PED surgeries across the US.
Please feel free to look throughout the PED Group and post any questions you have for the PED members who can maybe give you some assistance in your upcoming journey.
I will keep you in my thoughts and prayers and hope that you are able to get your PED surgery soon and begin your journey of being a survivor!
Best wishes,
Linda
thank you so much for all the info.
I wasn't tested for any allergies for the onyx before it was done. I've never had any health problems until the annie popped up in my head. Mine is a 5.6 cm. I noticed that most are measured in mm's. I guess I just have to be different..lol...I have not found many on this site that have had the liquid embolization either. I have a wonderful neurosurgeoun in Nashville that gave me great confidence in this procedure. I do suffer from migraines, but, they say they are not related to the aneurysm. Keep us posted on your progress. The BAF community is very helpful, encouraging and supportive.
Karen
Hi Deanna!! I'll message you!! Keep me posted and I'll be praying for you on the 11th that you dr. makes the right decision!!
xoxo
Karen