Hi everybody.I am from South Africa ,Durban.I was diagnosed with an inoperable fusiform brain aneurysm in December 2008 .It has grown from ,when found ,9,4 mm to last measured in October 2011 at 24mm wide by 39 mm long.I am told that there are no options but to wait for it to pop and say goodbye.Well by the grace of God I am still here against all odds and will not give up.I am constantly researching new methods .I have stopped working,having sold my business and now concentrate mainly on hobbies,home affairs ,a bit of travel etc.I do believe that with prayers there will be a positive answer.If not then God has called me.
This has placed a huge emotional toll on my family and close friends who have been very supportive .I would appreciate any advice in this regard from anybody who has been or is in a similar situation.
I to had a fusiform aneurysm though mine was only 8 mm. Still be enough to bleed out. I had it on the right carotid artery. I had a pipeline stent put in January. I am due my 6 month angio. I had it done by the Hospital for neurology and neurosurgery, queens square, London. They have been treating fusiform aneurysms for nearly three years now. My Surgeon was Mr Neil Kitchen. I suggest you e-mail him. His sec is. ■■■■■■■■■■■■■■■■■■■■■■.
He will be able to take it forward for you. He will know if there is anyone he can recommend in Durban. The neuro surgeons are good at telling you the risks. But each and everyone of us had to take a risk because we were all between a rock and a hard place.
thank you for your mail,it is appreciated.this site is amazing,I shouldhave joined ages ago and received more advice.It is thru sites and wonderful people like you that gives us the will to live and to know that there are experts out there in every field.I will make contact but I doubt that there is anybody in Durban.Thats irrelevant because I will go to Cape Town or London for that matted.Thank you and I hope that all goes extremely well for you.lesc
I looked through the literature I received as it states" flow diverting stents also allows us to successfully treat large,wide-necked fusiform aneurysms. These particular aneurysms have been difficult or impossible to treat in the past." What have you got to loose Les? send Mr Kitchen a copy of the CT scan and see what he and his team have to say.
Just so you know, Queens Square is the doctors choice it the best in the UK. It is an entire square devoted to neurology. It is also attached to Great Ormond Street. Childrens Hospital. People come from all over the world to be treated here. So dont be afraid to at least get an opinion.
I too had a giant fusiform aneurysm which wasn't operable. A flow diverting stent was considered, but because my aneurysm was so big it was thought it would be technically difficult and as the procedure is so new and the long term outcome uncertain at this time I elected to have a more conventional treatment. The interventional vascular neuroradiologist was able to coil the aneurysm and block of the carotid artery, the feeder. This was possible because my aneurysm didn't involve any of the important branch arteries. Where is your aneurysm? Have you seen a specialist vascular neuroradiologist?
As I've come across posts from several people with giant aneurysms in the last few days I've started a group. Would you like to join? If yes follow the link for groups on the menu above and go to page 2. I hope we will discover more people on the BAF site so we can share experiences and knowledge as well as encouraging each other.
Hi Jennifer.Hope all is well .I have contacted Dr.Kitchen and he has agreed to have a look at my case as soon as I send a new MRI which I will do in the next week.He did state that there currently is not much that can be done due to the position and type but will look is there is a possibility of stenting.Have to try.Thank you again.Les
I am glad you contacted Mr Kitchen. It certainly is worth a go. You never know unless you try. Mr Kitchen will soon tell you if there is a chance. IF he cant do it, ask him if there is anyone he knows with experience in dealing with your type of Annie. He will know I am sure, this is the Institute they have the top people in the Country working there and are in contact with the top specialists from all around the world.
So pleased for you Les, at least he did not say no. I will keep my fingers crossed that he can help you. Huggs X Keep me informed. I will be seeing him soon myself.
Les you are in my prayers; I pray that with new technologies and medical advances that a solution will come soon .... or better yet, that one of the referrals you receive from friends on this great site with bring someone who can help. The kind Dr. Jason Wenderoth in Australia recently joined this site as well; you might post to him and see if he could take a look at your file. John Matsukes on here is in similar shoes of trying to get new opinions on a said inoperable annie; perhaps you and he can connect and share experiences, resources. I know it has got to be a terribly difficult situation and I suspect talking to someone who relates so directly may be helpful. I must say, you are a true inspiration with your positive attitude and perseverance. Please do keep us posted.
Hello Cindy.Thanks for your prayers and advice.I thought I had posted something for John,but then that may have been in my thoughts only!!!!I will do so now.Thank you.les