My daughter, 28, had an aneurysm ruptured 18 mos ago on her left brain, which caused SAH. While treating the rupture, they discovered a large AVM on the right and embolized it. She has been going to UCSF for Gamma Knife treatment. Unfortunately, 2 weeks ago before completing the last treatment, her brain bled which caused Interventricle Hemorrhage. From the MRI, the coiled aneurysm was intact, and no sign of rupture anywhere from the AVM. It is unusual but staff said UCSF treated many brain injuries, so they did experience cases where the vein would healed itself. Anywaym, the CSF has been drained for 16 days already so the draining rate is slower but the CSF color is still quite reddish. Looking like they will put an internal shunt for her before they can release her from the ICU. After having the trache in, she was weaned off from the sedation medication, so her eyes started to open more, but she hasn’t been able to respond to the commands yet. Has anyone gone thru the bleeding twice?
I’m sorry to hear about your daughter. It sounds like she is quite the fighter. Perhaps there’s a Plan for her, don’t give up hope.
I’m so sorry. Having SAH is trauma enough without this. I have no similar experience, but sending healing light and prayers.
My brain has bled twice and possibly three times. The OR or ER didn’t record the bleeding the second time because it was interspersed with another procedure (shunt install I believe). However, a bleed is already extremely rare. But just to be truthful I have had three bleeds from an arteriovenous malformation rupture. I would recommend you check with your doctor regarding your daughter’s specific condition because although we can be a support, definitely advise against medical counsel from forums, even AVM or brain hemorrhage groups. I hope your daughter is okay. Blessings as you continue!
I also had a ruptured aneurysm on the brainstem and a SAH with a 2nd bleed. I don’t have any memories of my time in the ICU so unfortunately, I can’t tell you what the experience was like. In the meantime, hang in there. Sending you and your family all the best.
Aneurysm is easier to treat but I am still sorry that you got bled twice. How many years ago for the 2nd bleed and thanks GOD, seems like you have recovered well? AVM is tough to manage and fix . My daughter’s AVM is deep in the occipital & parietal which makes it even harder. The CSF draining has been going on for almost 4 weeks and the color is much lighter. They will do the clamp trail soon and pray not to have the internal shunt. She will need to go to an open skull surgery to remove the AVM to prevent the next bleeding ))-: Please help to pray for us!!
I had the aneurysm and the 2nd bleed close to each other a little over two years ago. Thankfully, I have recovered well. My vision and balance are still not back 100%, but I’ve adjusted to it for the most part. I have difficulty making emotional connections, although that’s starting to come back slowly as well. I will continue to send prayers your way. Please don’t hesitate to ask if you have other questions.
Thank you for your response. Amy both sides of her limbs are weak. It is going to be a heck of a windy road in front of her and thank you for having us in your daily prayers.
Thank GOD, the chief neurovascular surgeon, Dr. Abla was able to remove Amy’s AVM which located deep between the occipital and parietal lobes successfully. It was the longest and scariest day of my life, so I almost broke down while receiving a phone call from the surgeon, despite it was good news. The AVM was 3+cm big, perhaps, after being removed there was an extra space that helps with CSF flowing, so the CSF draining has been stopped and with the low ICP, she doesn’t need to have the internal shunt implanted in her head. The last step is to wean her off from the ventilator. There were a few seizures after the surgery, so DR had prescribed 2 seizure meds, which may hinder her breathing progress. This is the last piece for her to be released from the ICU so she can start the rehab as it is hard to have a good rehab while one is in the ICU. Please help to pray for her strength.
That is excellent news Ms. Lynn! Your earlier request for prayers was put on the prayer request section, I am sure all who participate in prayer will continue to keep you and yours in them. You are so right, ICU just doesn’t have much time for rehab, but the wonderful RNs will continue to do ROM.
So much admiration and so graceful for nurses, esp for those who work in the NICU department. They have been taking good care of my daughter. TY for you all prayers. 2 days ago Dr reduced 1/2 dose of Topomax, then completely took off from the seizure med list. She is more awaken able to maintain 14 breaths/min range. Hope she can step down from the ventilator to the mask with her tracheotomy soon. Thanks all for your prayers!!
My son is 6 years out from a grade 5 SAH. He was in a coma for almost 3 months. It took him 3 weeks with only his eyes opened because of all the amount of drugs. All the doctors said he was posturing. Later we found out it was spasms from all of the weight loss. He moved one finger, then two, then his arms barely. It was a very long process. His speech came last and was severely affected. Don’t give up!!! My advice to you is to start PT immediately. Regardless of their own reactions. If you ever need to contact us you can *by PM message” personal email removed by Moderator
My daughter has been discharged from UCSF’s NICU to a long term neuro care facility where they will wean her from the ventilator almost a week. Doctors suspected that her brain stem got irritated by the blood that circulated with the CSF fluid post-AVM surgery since she was able to breathe on her own prior to the surgery. She is in the spontaneous mode that allows her to breathe on her own, and the machine will kick in if she cannot recover herself from the 20-30 second apneas. OT/PT and Speech therapists have started at her bedside. Thanks GOD she wasn’t in the coma, so hope we will see “some” progress in the next few weeks. Ecamerin, thank you for sharing your’s son recovery and yes, we will never give up on our love ones.
You are welcome. We have come a long way. He has done the impossible. If you ever need anything, ideas etc. Don’t hesitate to ask. We were lucky, I am a Special Education educator and my wife is an ICU nurse, so we knew how to get resources. I also have been involved in assisting with TBI bills. We are here for you.
Today with the assessment, Neuro Dr thinks Amy has the locked-in syndrome as she can move her eyes with his instructions. Slowly, but the eyes are the only parts of her body that he could get a bit more responsive. He isn’t sure if it is temporary or permanent until he is done reviewing her MRI. At the previous hospital, neuro Doctors didn’t see evidence of brain stem being damaged. So I am hopeful still, however, do you know any neuro-rehab facilities that have a great locked-in syndrome rehab program? BTW, I think the admin has removed your personal email from your reply.
Yes Ms. Lynn, personal emails are removed if a member has posted theirs. Our entries can be read by anyone that is on the internet and does a simple search. Ben’s Friends does all it can to protect all their members in all the different support groups. We feel that email addresses is one of the many ways that can and should be protected.
We do have the ability to private message any of the members! The directions have been posted under New User Guide by our wonderful Moderator Support Group. Although they used me as an example, it’s the same exact steps to reach any member. Simply click on the member’s avatar (the member’s picture in a circle) and then click on the blue box with the envelope and word “message”. Enter your message and send it! If you are on a tablet, you may have to put it in portrait mode rather than landscape.
Thanks! Yeah, it is a good idea to protect the member’s email. Have a great day!!
Yes, they told me that I needed to use the avatar email box. We are in West Palm. I don’t know personally if there is anyone since it is rare for someone to be in that situation. I will ask around for you. What area of the Country to you live in?
Silently following and wondering as it has been some time since your last update, I do hope things are progressing well.
Yike, indeed it has been more than a month since my last post. It was quite a roller coaster for us every time she had a fever. There were UTI 3 times since she was admitted to the facility. For the last 3 weeks, she has been having low fevers around 99.5 with no infection from time to time while been weaning from the tracheostomy. Despite her swallowing seems to be ok, the tracheostomy capping went unsuccessfully a few times. Today, Dr told me that she has what is called “upper airway collapse” on her left side, the weak side due to the 2nd hemorrhage. They will not attempt to cap her anytime soon. Regarding her consciousness, she is definitely more alert, be able to track the movement of her nurses with her eyes and head-turnings, but not yet able to respond yes/no consistently with eye-blinking nor head-nodding/shaking. She also gains a bit of mobility with her left limbs, but still very much bedridden. In general, everyone is happy with her progress given the severity of her stroke. We are praying for the neurons to connect, so she can respond more consistently and participate better in the therapies. She needs to regain her durability and strength in order to get out of this long term care facility to go to the inpatient rehab facility. Thanks for all your prayers and support.