Well I hadn't thought of that before but choosing only the best that makes a world of sense. If you are trying to justify the use of a new device why would you put itin the hands of the less skilled.
I just got word that the FDA approved its use on me and am scheduled for the procedure on the 14th of this month. Now I hope I can still pass all of their tests to stay qualified.
How is your friend doing that had the operation in February?
I don't know if my surgeon does this procedure but he is one of the top surgeons in Canada and he is out of St.Michales in Toronto. His name is Dr. Julian Spears and this man is amazing!! I actually have to go tomorrow for follow up scans and then an appointment to see him afterwards. If I remember, I can certainly ask him about this?
Sounds like your a fellow canuck. I'm suspect that the PED is more along the lines of a neuro-interventiologist, not a neurosurgeon. I tend to think of them as 2 distinctly different types of doctors. Having said that I think it was St Mikes that was researching the ped at the time I was considered. I may be wrong but I'm sure it was one of the u of t affiliated hospitals. I was very impressed with the neuro team at St. Mikes. I cannot remember the name of dr that consulted on my case but I do remember there was a dept. of the hospital named after his father. The son was a smart guy who reviewed my case and laid it out clearly and simply for me. I was very impressed with everyone and everything at St Mikes. They didn't have the perfect solution for me but at least allowed me to continue on present treatment plan confident that all treatment options were considered.
Fred
Happy yo hear you got a date and I certainly wish you great success. Please keep us up to date on how your doing
I am gettimg a little nervous, I still have to go through a battery of tests to qualify for the surgery and to date none of the tests have been scheduled.
Otherwise I am still quite confident that the device will work and that Dr. Nelson is the best fellow to do it. I will keep you all posted and thanks again for the thoughts, good vibes and prayers.
Fred they only pick the best Dr's for the trials as they only want perfect outcomes, so be confident you have the top 1% in the world! My Dr at Mayo was both a neurosugeon and an interventional radiologist! On ly the elite Dr's and hospitals are on the PED trials. Please send us update when you are able.
The Neuro surgery was completed in only 5 hours last Thursday. I am now he proud owner of two 25 mm long pipelines and a myraid of coils. Dr. Nelson and his team of surgeons performed the operation. What a class outfit. I am truley amazed.
I am pretty weak, they finally let me leave NYU in NYC yesterday and I have been resting a lot. Pretty numb on my whole left side, still have the double vision. Am taking a whole lot of steroids to keep the swelling down in my brain and have recurrent mild headaches.
But for all of that I am really fantastic. My chances of survival to year end were only 20% before the operation. Now that I am out of the hospital and a week into recovery they have moved me up to 90% if I can make it another month that gets me to 92% and then 1% each year after that.
That is FANTASTIC NEWS!!! I’m so so happy for you - things seem to be going heavily in your favor - keep resting, and I hope you can find peace in the facts of how well you are doing. What a wonderful update!
Delighted to read this... for you and so many questions...first, where are you during your reovery time? Then, if you are documenting your recovery / healing process...to be able to provide that info to others as you sought on your arrival here...
Your information will be remarkable for your peers and for the providers...
When you have time / energy, will you share your decison process to be at NYU, which artery/segments your fusiform was /is located, etc? Is the Pipleline the main advancement to coil a fusiform vs surgery?
Again, delighted for you...do let us know where you are during your recovery...
I agree but in the discusson we had in the pre Op meeting I beleive that they really have shared as accurate of an estimate as they could have made for me at the time. It seemed that after Dr. Nelson discussed the odds of my survival he actualy expected me to back out of the operation. I feel he was pulling no punches and not covering himself in the least.
What has been even more amazed for me to understand is just how humble all of the Doctors are on Dr. Nelson's team were. This past Wednesday, the day I finally was able to leave NYC, three of the 5 were there to meet with my wife and me.
I was trying to tell them just how thankfulI was that they agreeded to take me on as a patient and attempt the very complicated repair.
Dr. Nelson responded and said, (I'll try to get this quote as accurate as possible)
'We are just technicians who are trying to learn how to do this procedure best but you have put your life on the line, we want to thank you'.
I was just amazed.
Thanks again for all of your support and encouragement.
WOW! This is so remarkable! I am waiting to get approval from my insurance co for out of state PIPELINE treatment of my 8.3 fusiform aneurysm which is ony left internal carotid artery . Thank you so much go sharing. I have experienced the same symptoms, but also loss sight in my right eye. I’m so happy that you were able to get the surgery and it was a success. I am having mine done at SUNY (Stoney Brook) by Dr David Fiorella, God be willing. My NeuroiSurgeon/Radiologist here in MI referred me & has appealed the initial denial by my insurance for the procedure. Thanks again Fred.
Thank you so much for sharing your experience Fred. Do you now have to take Plavix & aspirin since having PED surgery? If so, for how long do you know?
God Bless you!
Be well!
Audrey
Where are you located? if there is a facility near you?
I know that Dr. Peter Kim Nelson travels all over the world to do these pipelines. His team flew to Arizona to repair a ruptures anuerism in a woman who was able to get FDA Compassionat Use in only three days.
The day before the did me they did another fellow at NYU, someting in the next week or two the team is flying to Madrid to repair a person or people in Spain.
Perhaps even Dr. David Fiorella would come to you. The only real criteria would be if there is an acceptable facility in your state.
I wish you a speedy resoltion and a very quick recovery. I am still amazed how quickly i am feeing better.
Yes I now take a Plavix every morning with food and a regular 325 mg asprin every evening before I go to bed. I seem to have no problems with them at all.
I will have to take them until it is verified that the anuerism has totally thrombosed and that may take over a year because of the length of the two pipelines placed in series. Or it may never happen; and I see no downside to continuing that regimen forever. It does not seem to bother me in any way.
Audrey, Dr Fiorella did the very 1st pipeline and is the very best there is! Congratulations and I am very happy for you! Mine was on right internal carotid and hitting eye nerves, 100% success with 4 stents.
My operation installing the PED's and the coils was 20 days ago.
I've started the 'Dose Pack' to come down off of the strong steroids I have been on since the operation. This is the third day of the Dose Pack and have slowly developed a headache that is just getting worse and worse.
Three Ultrams and an adult asprin haven't taken the edge off of it. Does anyone have any suggestions?
Hi Fred...I am not sure how some of these posts work...I left you a note somewhere ... the day of your surgery...you had my prayers...I haven't stopped thinking about you since and glad you are back to posting...
How r u? I am confused to which was the last note to this post...doesn't take much to confuse me...
The best way I have found it to look at the first line of each post it tell you how long ago the post was posted. it also seems like the most recent is at the end except if someone goes back into the history of a forum and replies there then the response is nested back into that location(I think).
Perhaps one of the WebMasters can help us to understnd how the site works a little more?
How are you today?
I checked back with my Docs up at NYU and they reissued a different regimen to get me off of the steriods, now it will take 2 weeks instead of 6 days but I am confident I will now have a softer landing.