My new neuroligist is trying to get my meds worked out on getting headaches under control and after the last neededmed change, I got my answer from him,,, ,,,, the annie i had coiled was so big and the repair has so many coils in it that it sometimes gets inflamed,,, causes swellling ,,,it is like the body wants to reject the coil mass in the brain! therefore causes nerve pain ,,, migrains ,, ect,,,, and yes I will have to be on meds for the rest of my life..... I hate taking pills but ,,, the good things are I have a great neuroligist helping me keep it together for my daughter! and If what I add here on this sight can help one person then all this pain is worth it !!!!!!
Hi Julie,
glad to hear that you have found help and will be able to move forward. Sorry about the meds for the rest of your life but if it helps then it's worth it for you and your daughter.
Kimberley
thanks kim,,, was worried that i had another annie or even worse that the original had started to grow again!!!! but the siezures and the headaches i will deal with ,,, just have to find the right med combo,,, and that is what takes the time !!!!! i think of my meds as a" food group" now!!!! there are do many of them and have to take them so often !!!!!
really ashame not alot of post research on coiled anuerysm followup i could find on the net,,,,,, we need a group on that !!!!
info on what on what people experience yrs later and what meds they have to take , ect,,,, would be great help and comfort for patients and caregivers as well!!!!
Hi Julie...glad you are getting help...like you I have a wonderful Neurologist who helps me is somany aspects of this annie journey...
All of it takes time...but eventually things will work out...Hang in there...
Gotcha in my Thoughts...Colleen
Julie...
Your neuro is wonderful to explain so much...connection to the nerves, etc... are you able to explain which drugs were provided to you and for which of the symptoms? Someone here recently said that her neuro told her the symptoms she was experiencing were not related. The neuro who treated me initially told my family my symptoms were not related to his procedure...
Thank you for helping others...
Julie...
Your ideas for Group are great...
Re: for Post-research data...of the facilities...likely to ascertain all patients had paid; for the device supplier... the value of their stock...
For our types of research...all depends on where the coils get implanted and how they are held in place at that location... how many stents are added after the fact, etc. For a period of time, stents were FDA approved for use on wide-neck aneurysms w/coiling...and, were used off-label, sometimes ... off records...Early 2005 a new stent was FDA approved to be used alone in the cerebral arteries... My humor is that the study data supplied to the FDA for approval was likely off the offlabel implants...
When I attepted to secure data from the supplier; I was transferred across country, in both directions...and, escalated to the senior counel in their legal department;
I have never gotten my questions answered...which presumably displays the corporate desire for post-coil or post-stent research...
Please remember, my personal opinions are too platinumbed to be degreed and/or licensed...
Truly hope you get the groups set up...
pat have her contact me so i can get a little info from her ,,, i would be more than happy to help her out! julie
Julie…somehow, I am not comprehending here… which does occasionally happen…
Interesting,
I too contacted a aneruysm clip manufacturer sales office and was referred to someone at another office. The person I contacted returned my call but unfortunately to my voice mail. Subsequent calls and messages were never returned. Something seems amiss, doesn't it?
ty colleen,,,, you are so sweet! and yes it does take time ,,,, and most of all communication!!!! we have to remember our neuroligests are not mind readers! and we can't be shy,,, we need to tell our neuros every symptom we are having no matter how small we think they are !!!!!!!
I forget alot so i keep a daily journal and go over it with my neuro dr at every visit,,, can tell him about every bad day i have had since last visit and what may have brought on the headaches!!!! has helped out with my med changes !!!!!!!! Julie
Hi kim, yes it is worth it , not 100 % yet but getting there! bout 50 now!!! and I am hoping all is well with you and I am keeping you in my prayers!!! huggssss !!! Julie in Delaware
Ed... not at all amiss in corporate policy... an employee likely cannot risk being amiss of their policy... We are not treated as the bottom-line paying customers...
Should you yet want info...try that mfr's website, try the FDA site...track their stock record...where the greatest corporate interest is displayed...
Again, my personal opinion, non-degreed and non-licensed...
P.S...Julie;
I finally comprehend my intent...now, my apology is that I cannot remember her name or the approx date...to try to loook for it...
amen sweety…one person can make a difference,i thank God for this site…