My 49 year old wife was diagnosed with a Giant Fusiform aneurysm in her ICA in January ‘19 and had a flow diverter put in March 7th we were told it would be a difficult surgery because of the location and take 18 to 24 months to embolize the aneurysm. She was put on Plavix 10 days before the surgery and had to immediately reduce the dose because she was hyper sensitive to it. The weeks following surgery we visited the ER twice she never felt right, she fainted once was always weak and felt like she was in a cloud. At her first follow up 10 days after the surgery they changed her blood thinner from Plavix to brilinta. She continued to have the same issues. March 30th she suffered a stroke became unresponsive and had to be air lifted to the Loma Linda Medical Center. The Doctors first performed a DSA scan to find the bleed and repair if possible. About 40 min into the procedure the surgeon came out with a good news bad news scenario. Good news was the aneurysm was completely gone and the vessel was healthy. Bad news was they couldn’t find where the bleed came from even though it was a large bleed. The next morning the doctor told me the bleed didn’t cause any brain damage and they think the bleed was caused because her blood became to thin and found its way out through a micro hole in the aneurysm. He said they would continue to drain and monitor her brain pressure(ICP) and keep her sedated. Two days later the drain became blocked and they started to get what they thought was false high ICP reads. A CPA agent was used to unblock the drain which is another kind of blood thinner. This caused her second stroke, another DSA scan was performed to see if they could repair the second bleed. The bleed had already stopped but the pressure was so severe they had to perform an emergency craniectomy to relieve the pressure. The surgery went well but the Surgeon informed me that the second stroke did cause damage because of the pressure and amount of blood but are not sure how much damage at this point. She has been stable for the past 2 days, All her vitals are good along with her ICP. The ICU started to wing her off sedation the day following surgery. They want to get her off the ventilator to avoid getting any other infectious diseases or other issues that can arise from being under sedation and to get an evaluation. The Surgeon wants to keep her sedated and let her brain heal. I’m with the surgeon but the ICU team feels getting her of sedation is best. I’ve been told by friends that have gone through this that sedation is good healing for the brain. I know this isn’t my decision but has anyone dealt with the Surgeon and ICU team not agreeing on a plan. It’s also the weekend so the decision may not happen for a couple days.
It certainly doesn’t put you at ease when the team is not in agreement. My wife’s team met daily to review the past 24 hours and discuss what should be done going forward. That was a plus as everyone had the same direction.
My wife was a 5 and lost virtually all abilities short term, but she has had a very good recovery. She was sedated for a long time and doesn’t remember anything of the first month in the hospital. They always told us that though we didn’t see much, the brain was busy healing. I don’t know, but I sometimes think that was one of the reasons she didn’t have some of the complications others have had–her sedation. Anyway, I wish I could help you, and I will pray for you.
Claudia, I did have a few times when the ICU team argued with my Dr’s team. My Dr stuck to her guns of which I’m grateful as I’m still here. Cindy says she thinks they kept me sedated a couple of days, she thinks… I remember telling them to stop the morphine and then wanted it back a couple days later, that never happened lol.
On weekends, and most days, I’d get the doctors who worked under my Neurosurgeon. They kept in constant contact with her even when she was out of state.
I’m no medical expert, but I wonder why they haven’t done an MRA as opposed to the DSA. Loma Linda, if I remember correctly, is supposed to be a top notch teaching hospital. My brother was in the VA part, he had esophageal cancer. The only thing I had disappointments in was the Drs not being forthright with him. They should be very lucky I ruptured after and not before as I have no filter now. The RNs were superb.
One of the things you might try is to get in touch with the Social Worker assigned to the ICU. The SW may be able to get a meeting with you, the surgeon and the ICU team so you understand the conflict better and everyone’s opinion is there. Make them explain to your satisfaction.
It’s my belief that the different teams should not be bringing the conflict to the family. Family has enough on their plate. Family shouldn’t have to figure out the best course of treatment especially if they’re not trained in the specific medical condition. One of the things I find beneficial is to ask them if it was their wife,daughter, mother, sister what would they want done.
Wishing you and your wife the best