In January was having pain above left eye. Dr treated for a sinus infection! Three weeks later went back with more symptoms! Severe neuropathy when coughing or sneezing. Dr ordered an MRI where a 6 to 7 mm aneurysm was found. Went back 5 days later and had an MRA where the report said it was 9mm. Neurosurgeon a week later and he said it was over11mm and once angiogram was done it would show true size. It was 14mm in sinus cavern. Dr Koon a neurosurgeon from John Hopkins did pipeline stent on March 27. A four hour surgery and a successful stent. Now I suffer from severe anxiety over what may be to come! Even though it was a success just can't get over the whole traumatic event.
I had the same, it took me a while to get over the anxiety, I think I started to relax after my follow up angiogram, I am almost 12 months from having my PED and even though I no longer stress it is always on my mind. But now know that I will be monitored for the rest I my life. I wish you well. Hugs Lynn
hi Lucy! we couldn't be more different- i was sah coiled but the ptsd issues are identical. Hopefully these issues will diminish and or resolve. I will never feel normal unless i am normal-completely normal. The new normal is so negative and irritating. Thank God they did the mra after the mri for you! I'm so happy for you re the successful PED, keeping you in thoughts and prayers!
Hi Lucy,
May be’ you already know there’s a PED group inside this site.
Just ask to reach us , i had my stent 3 years ago in Italy.
Take care,
Giovanni
Hello sorry to hear about what you been going through. If you feel up to it can you please tell me how you felt straight after pipeline stent because I am having it done on the 15 April 2013. How did you feel afterwards and ow do you feel now.
I was in Neuro ICU for 24 hours then up to neuro floor. Stayed there two days and was discharged to home. I was very anxious so I stayed in Baltimore area for another two days then went home. Having some head pain and sensations in head but seem to be doing ok. Very Anxious!!!!
where and how do I get to it? How are you doing ? How long before I feel like me?
I just keep praying things will be ok, praying for you! Do you still have head pain. Are you still on Plavix and aspirin?
How long has it been? Keeping you in my prayers!
Go to groups page, log on an join the pipeline embolization device ( PED ) and join, there are over 100 members in this group, fabulous group very informative. Giovanni was a founding member, which we are all glad he has showed us the positive outcome. Lynn
thanks
I have tried but I don't know what I am doing wrong
You are so early in the healing journey...it takes time to minimize the anxiety...as I tell many ... we work towards the procedures and healing...then we must work towards "not letting the Brain aneurysm win..."...
Wishing you a good day ~ Colleen
Hi Lucy and welcome to BAF,
First of all, please know that all of your fears and perfectly normal and that given some time, they will fade away. You are so new to your recovery and those of us who have had our PEDs have all been where you are right now!
I am approaching my 2 year "annie"versary of my PED being placed this coming June. When I received my PED there were only 6 people before me who had it done, so I was one of the first on the East Coast to have the PED placed after the FDA approved it for use here in the US.
Giovanni, our the other Admin of the PED Group, is 3 years post PED and also, in our PED Group, we have a few members who had gotten their PEDS prior to FDA approval. All their stories can be found in the PED Group. I'm glad you were able to find us and join!
As mostly all have said, you will begin to relax probably around the time that your follow up angio will be done once you see that the PED is working doing its job. Some of us heard that our annies were gone at 6 months, while others had to wait a little longer to hear those words.
We are here to help you through this so please feel free to post, either here or in the Group all your fears and anxieties. We will help you through!
Best wishes to you for a speedy recovery!
Linda
Hi Linda,
Thank you for the encouragement with my fears. I just can't seem to relax. I wonder if it is working. Is the aneurysm getting bigger, on and on and on.
lucy
I pray to God that between him and me together we will not let this aneurysm win! Thank you so much for words of encouragement.
Hi Roxanne
I hope I am not jumping the thread,but just to tell you that I had a pipeline stent at the end of January 2013 after being diagnosed in December with a MRA scan which I was sent for because of family history
I also had been experiencing what I can only describe as a fluttering or movement over my left eyebrow brow for quite a while before my scan & diagnosis,as it happened the anyeursm that was the largest & the one they treated was on my right side,connected with optical,I do have a smaller one left side( mirror image) & although the mra showed two,the angiogram I had later has showed a further 2 but these are small
Anyway - to get back to your question about how did it feel...to be honest I have been totally amazed about how good I felt & still feel.
When diagnosed I was anxious,but also relieved that they had been found as I had 2 aunts that had passed away from ruptures in the 1980's
I had never had an operation before in my life & had never been in hospital before
I had my procedure on a Tuesday morning at 9am,I think it took around 3 hours,but I was fairly awake by early afternoon,I was monitored in ITC for several hours,& then moved to a hdi ward on the Tuesday night
I can honestly say I had very mild pain & only minor discomfort,compared to what I had gone through the minor discomfort was easy to deal with...this was mainly round the groin entry sight ( very slight pain)
As soon as they took the catheter out & they allowed me to move,I got out of bed & moved around a little,I tried to sit in the chair beside the bed rather than lie in bed,I would also have a wander around the ward ( I had read before I went into hospital that it was better to move if possible rather than lie down)
I was ready to be discharged on the Thursday,I know everyones recovery is different but for me it was important to get back to normal as soon as possible( I am 49 ) I went out for my first walk on the Saturday & met friends at a cafe ( for some reason it was important to me that my friends & family saw me as being normal as I dislike the well meant sympathy :-)
The following week I felt slightly tired,but listened to my body,every day I walked for a bit & increased the distance slightly every day ( as long as I felt comfortable),7 days after getting out of hospital I went to the theatre in the West end of London & dinner,then 2 weeks after I returned to work
I still feel good,I may get slightly more tired than I used to,but I am not sure if that is because I think I should be feeling something adverse after what has been done?
I have my follow up on 18th April & fingers crossed all will be ok,I had an appointment with my kidney consultant( the one who sent me for the scan in the first place) this month & he was able to look up the result of my MRA scan that I had after the procedure & before I left hospital & he was able to tell me that it had started to shrink already
I have some odd feelings in my head,sometimes a little tightness or peculiar feeling,it lasts for seconds & again I am not sure if this is normal or I am now noticing aches & feelings that I would'nt have paid attention to before
I will run these by my consultant no the 18th & see what he says,but I am not dwelling on them for now
I think my consultant will tell me that I will have to have the one behind my left eye dealt with shortly & if this is the case,based on my experience so far I will not be concerned & will have it dealt with,I was totally amazed how my anxiety disappeared on the morning of my operation & I handed myself over to these talented people
I am sorry I have rambled on a bit( a lot)
It has been so much for you to absorb,but this seems to be a site with great support ( I am a new member myself) I mean to access the ped site also
take care
M
For those of you trying to access the PED Group follow this link: PED Group. We have tons of stories and information for everything regarding the Pipeline Emboblization Device (PED Stent).
Best wishes!
Linda
Linda I was told that you can get a real bad headache when the aneurysm completely occludes. Did this happen to you?
Lucy I was told this also, but it never happened, I only ever get a headache from eating too much dark chocolate. Thinking positive thoughts for you. Hugs Lynn