So my 6 month angio was August 9th and doc said everything looked amazing. Annie was totally gone. I have a copy of the report. All wonderful blood flow to my brain cells! Yeah!
The day of the angio, during the procedure, doc told me it looked good and we actually discussed right there mid-angio about me going off aspirin forever. Lol…how’s THAT for being awake and not sedated enough?!
My family asked him once I got back to the holding room too. Then when they came to do a final talk with me to send me home, we clarified with him (third time we discussed it today) and even his nurse practioner restated that I could go off the aspirin forever.
Fast forward a week. I get my baseline MRA done. They used it to compare to angio results and plan on doing only MRA annually. MRA shows tortuous internal carotid arteries in neck and head. Also residual annie of 2mm. Started at 10mm with 8mm wide neck.
So I call the office as a general follow to get results faxed to my house since I’m having an ear surgery in a few days, and the nurse practioner gets on the phone and says “sorry, unfortunately we want you on a baby aspirin as soon as your ear surgeon will allow it.” No explanation as to why. The nurse practioner did that to me with the Plavix dosing also. Doctor said 3 months and she calls me at home and says “no we changed our minds with you. We want to be cautious with you and do 6 months Plavix”. Now I’m totally frustrated since obviously they can’t keep their stories,ideas,orders straight and on the same page with one another.
I realize taking a baby aspirin is really not a major deal…but I just as well not take it if I don’t really need to. Ugh!!!
I had my PEDs implanted over 14 months ago. I was put on aspirin 81 mg and Plavix for six months. The Plavix was stopped after my 6 month angio. The 81 mg aspirin I will be on the rest of my life.
I have seen, over the past year plus, many different doctors do many different things. For instance, some outside of the US stop the Plavix and aspirin after the 6 month mark. Same here in the states, some stop, but mostly PED recipients are told from the beginning that they will be on aspirin for the rest of their lives.
I know that this is frustrating for you, but I promise you your anxiety and frustration will lessen more and more each day.
I also have another 3mm annie on the left side ICA which is on a watch and wait. After my 1 year MRA, no growth, so I am thrilled with that.
I have also had several cervical injections (for another medical issue) and have gone off the aspirin 7 days prior to the injections, and right back on it afterwards. No problem so far with that.
Please call your doctor and ask for an explanation. Remember, he works for YOU, not the other way around. You should feel comfortable enough to be able to ask questions and get answers!
You are in my thoughts and I hope that you find the answers that you are looking for,
I closed the other 3 copies of this discussion. When you can, you can delete them, it's just much neater to have all the responses in 1 place so as not to confuse everyone.
Done/deleted. Sorry about that! Not good with the phone yet.
Once I get this ear surgery under my belt, yes, I am going to call them and ask why they (or should I say...she...the nurse practioner) changed her mind. Sometimes I feel bad with the number of questions I have called in with, simply due to this other ear problem I have, some symptoms have been overlapping. Even my doctors will call the neurosurgeon and ask about the PED and my bodies ability to handle the ear surgery, when I can get off the Plavix/ASA, etc. Typical of all this....my ear surgeon today calls me and says to double check with the neurosurg to make sure that it is ok for them to kink my neck to the PED side for 4-6 hours of surgery....so again I place another call into the PED doc. Ugh!
I'm frustrated since I have no other risk factors for a stroke and the simple fact they keep changing their minds with me.
Linda, do you get MRAs for follow ups??? I was intrigued by the fact that the report said they couldn't see the PED actually...it was a "void" in the vascular system where the previous CT and angio had shown the PED. Said because of that, it couldn't be evaluated for in-stent stenosis. I presumed it would be visible on any test on my head????????
Yes Rosemary, I have had 3 MRAs since my PED was implanted and will have them annually.
What my surgeon said was that the MRA was necessary to check on the PED and I also have another small 3mm annie on the left ICA, so an MRA is necessary for that.
I'm not sure about visability, you are actually the first one that I've seen even mention a problem with it, but that is why I created this Group so that we can all learn from each others experiences. Please write that down as one of the questions to ask the surgeon. Remember you have a right to know and ask.
As far as them changing their minds, it could be that they are discussing/reading, etc what other doctors are doing and that is what caused them to change their minds. Again, ask ask ask!!!!
We are here for your emotional support and will answer any questions we can! I'm glad you found us.
Sorry for all your frustration! !!! I have learned that for ANY medical issue i have, sinus infection, ear infection, chiropractor,etc. Everyone makes me call my neurosurgeon. I’ve gotten used to it. Docs are afraid of our condition and the ped. But, it’s better to be safe!
So I spoke to my neurosurgeon's nurse practitioner AFTER my big ear surgery....temporal craniotomy and 5 hours to repair, but hopefully healing now.....anyways....speaking to her, she basically said that for no particular reason she had me continue the baby aspirin. She is SO sweet, that I don't want to get into an argument with her, but she seems to override his decisions. And then my ear surgeon needed a measurement off one of my old CT scans, and she was unwilling to get the information for me. I was fairly mad about that since all it took was a call to the manager of the radiology department and ask them to do it and provide them with my doctors information to send it to. I wasn't sure they would do it for me, the patient, so that is why I asked the nurse practitioner to get the information. And to top it off....the measurements they were wanting were definitely abnormal....and this relates to a throat grabbing sensation that I have had since I had the pipeline placed. Elongated styloid processes....anyone ever heard of that???