Hello! Im Valerie and I am very new to the group. I have two aneurysms that were found by accident. I had a clipping done on the first May 8th; very close to the optic nerve. I had Doctor Nussbaum do it because I learned of his results with other patients. I had some pain control issues after, but the surgery itself went better than I could have hoped for! I can see out of both eyes just as well as before the surgery and as of now (two weeks) I can control any pain with Tylenol. I have one more aneurysm now to fix and it is in an inoperable spot. I am super allergic to nickel so worried about the Pipeline Device but due to location, and with the size of it, coiling would not work well so PED may be only choice. Has anyone else run into this?
Hi Valerie and welcometo BAF,
I invite you to join the PED Group here: http://www.bafsupport.org/group/pipeline-embolization-device-ped where you will find tons of info regarding the PED and everything involved with it.
I myself had two PEDs done back on June 8, 2011 and tomorrow is acually my first "annie"versary of my annies being found.
You're in my thoughts and prayers!
Linda
Hi Valerie,
Please discuss with your doctor. However, on the http://www.ev3.net/assets/008/5897.pdf site, I found the following caution.
"- Persons with known allergy to platinum or cobalt/chromium alloy (including
the major elements Platinum, Cobalt, Chromium, Nickel or Molybdenum)
may suffer an allergic reaction to the Pipeline® Embolization Device."
Personally, I would not want to take a chance with the PED if I had a known nickel allergy. My sister, who has a nickel allergy, had to have her CU7 IUD removed shortly after implantation because of an allergic reaction to the nickel in it. My own story is of an allergic reaction to a specific type of suture that was used in hand surgery. This was pretty traumatic. The pain from the rejection/extrusion was second only to the pain I experienced when my annie ruptured.
I wish you the very best.
Carole
Hi Valerie ... I hope the PED group can help you out...~
Thank you everyone for the quick responses! It was such a nice surprise to see them. I have decided to take my medical records to two different clinics and ask them for their opinion. This process will take 6 to 8 weeks but with my recovery from the clipping, I would not be able to do anything within the next 3 to 4 weeks anyway. I will also begin calling in to these clinics to see if they have cancellations and can fit me in sooner. In the meantime, I will join the PED group to keep up with the latest. I would love to find a stent solution that does not contain nickel. The clip and metal plate in my head from surgery are not causing any problems at all. When I have more information, I will make sure I post it. :)
Valerie,
There are silk and non nickle versions so hopefully these can be used by your Doctor.
Thank you Ed! This is great news! Thank you so much!
Valerie;
Congrats on the great recovery from your clipping!I hope you are doing well! I am new to this site and was going through old posts from members and saw this post of yours. I hope you found a solution to your nickel allergy issue…and what is a pipeline device? I am not familiar with all the terms used on this site yet…I`m a newbie to all of this! I did read that your neurosurgon was Dr. Nussbaum for you clipping. I am going in for a clipping on June 21st of a 3mm and Dr. Nussbaum is going to be my surgon also and was wondering what you thought of him and the success of your surgery and if you could tell me anything I need to be aware of as far as how I will feel after the surgery. I have been looking on here for people that have had him for their surgery. I am excited that I found someone! Did you have any atrophie of your temporal muscle after he cut it? How long before you could chew without pain?
I am sorry to hear that your other aneurysm will be more difficult to deal with if it is in a bad spot…I will say many prayers for you and hope that everything goes well for your next challenge with the other aneurysm.
Take care,
Paula.
Just wrote a long note but it did not show up and somehow was deleted. I had a very good experience and I am fine. I only get mild headaches now sometimes 4 weeks after surgery. My jaw hurts a little when I try to open it wide but I am healing. I had a very good experience with Dr. Nussbaum. He is a wonderful surgeon. My other aneurysm is not in a dangerous spot and I met for a consult on it today and I can wait and monitor it and do a pipeline after I work with an allergist to see if I will have a problem :) Would love to share more...I requested you as a friend so we can message each other. You are in excellent hands.
Valerie:
I can`t tell if my messages are coming through to you on our friends messaging so I am using this instead.
I have a BUNCH of questions for you! How long did it take after the surgery for you to be awake?
How long does it take to not feel tired all the time? What is your activity level now? I have a 5 yr old daughter and a management job that works me 50 hours a week. I get 3 full months off for this procedure but still worried about my stamina within that time period.
How long was your surgery?
Do you have an indentation in your scalp now from the surgery?
I have fairly long hair and was wondering how badly it hurts to wash your hair. Is your scalp numb where the incision was made?
Did you wake up with black eyes or did you get a black eye?
Hi again Paula! I don't think the messages came through to me so I will respond here. :)
1. my surgery was 2 hours
It does not hurt to wash your hair...and the nurses wash it for the first time and that feels good. Don't use conditioner or any hair product but plain shampoo. Ask for a prescription for sterile water and get some hydrogen peroxide. Mix a 50/50 solution and clean your suture with a q tip. Again, if you ask, your nurses will show you how to do this in the hospital
My scalp is numb just around the incision now...it was numb on my forehead right after surgery but feeling has returned little by little
I had a whopper of a black eye because mine was near the optic nerve. :) I told everyone not to mess with me :) I can see just fine. It took a while for my eyes to coordinate together...and they were sensitive to light at first.
I am happy to answer whatever questions you have. I will message you my FB account too.
I woke up within an hour or so after surgery...and went back to my room where my family was waiting. St Joes has wonderful rooms...very well kept and new and comfortable. Don't expect to watch much tv or read...have someone read to you! Don't have too many visitors...it is difficult to heal with constant stimulation. Wait until you are home...you will really want visitors then.
I still take a nap once a day. I am just starting to walk around the small lake by our house now. I want to start zumba again in a week.
Your daughter will be such a special gift to you during your recovery! Enjoy her! Make sure she goes to a friends sometimes so she can enjoy herself a bit during the stressful times.
Do not plan on going back to work quickly...hopefully they will help you ease back. Take the maximum time off and have a nurse come right after surgery if your insurance allows it. It takes time to heal even when everything goes very well.
Feel free to ask anything else :) Val