Healing 5 months post-op with deficits? My boyfriend's three brain surgeries story

Hi all, My name is Sydney Parker and I’m new here. I joined this forum because my 24 year old boyfriend, Kawan, had a third brain surgery in October 2017. This is his story:

“In August of 2014, I developed something called a cavernous malformation on my Brain stem which caused me to lose control of my right side motor functions, develop slurred speech, and difficulty swallowing. The mass was discovered and subsequently removed for the most part. I returned to the university about two weeks after recovery, and as any 20 year old would do, I returned to my normal life but my body hadn’t been given proper time to heal. I was president of the campus chapter of Alpha Phi Alpha, taking a full load, and pursuing opportunities outside the classroom. Due to my incessant work ethic, I was not able to slow down and I suffered a stroke on September 18, 2014. I was rushed to the ER and spent a month at MedStar National Rehabilitation center in inpatient physical, occupational, and speech therapy. I was released on October 17, 2014, and spent the remainder of the year in outpatient therapy. I turned 21 on December 25, 2014. Following the stint in rehab, I returned to the University and completed a successful spring 2015 semester. Throughout the year I would continue to check in with my neurosurgeon and have MRI’s to monitor the status of the malformation. Unfortunately, about September, it was discovered that the mass had regrown and was much more aggressive this time so we slatted a second surgery for October 1st, 2015. The surgery was successful in getting a lot of the mass material out of that small area of “high-priced real estate”, and the doctors were happy. The scan did still show something there but not enough to raise alarm. Post surgery recovery was rough and took the rest of 2015 to do so. Constant checkups and MRI’s were used to monitor the status. The whole year of 2016 and the first half of 2017 went swimmingly. I returned to physical activity, became independent, and best of all I graduated from Robert H. School of Business and started my career two days later. All seemed to be going according to plan until it wasn’t. Starting on September 9, 2017, I began having constant headaches accompanied with waves of full body weakness and dizziness. By Thursday, September 14, 2017, I had decided to see my primary care doctor but she was out sick so I went to the ER. The CT and MRI scan showed that I had suffered another hemorrhage in the same area. The neurosurgery team thought it would be best stave off surgery, for now, so I was monitored for two days and sent home. The next day the Headaches got worse, and some new symptoms set in. The left side of my face is numb and nonresponsive, I cannot taste on the left side of my mouth, and the deficits on my right side are returning as I type. I woke up the next morning with double vision and nausea so It was back to the ER. It was discovered that yet another hemorrhage had taken place in the same area. The doctors had done two approaches already and the risks we high for a third entry so we were referred to a skull based specialist at Rutgers University hospital.”

I am happy to say that Kawan’s surgeon, Dr. James K. Liu was successful in the complete removal of the mass. As a couple, we are dealing with the recovery now and it is SO so incredibly hard to say the least. The right side of his body (arm and leg) are very tense, not weak per say but there’s no to very little movement in fingers. It’s about 5 months post Op and I am hoping there is somebody out there who can relate to my boyfriend’s story, or possibly post surgery deficits? I know every physical body is different, but I’m really hoping/wondering if Kawan’s right hand will come back to life. And i hope his story is able to inspire somebody out there who is going through it.

Bless you all,
xo

Sydney,

Welcome to the site! Kawan has been through rather a lot in the last few years and I hope some of the people here who have had a bleed either before any surgery or who’ve had a bleed in or as a result of surgery will have experience of recovery to share with you.

I haven’t had a bleed so I can’t share any personal experience; only what I’ve read here or seen somewhere.

I did watch a brilliant TV film the other day, which I shared here. The original is a BBC programme and may not be accessible outside the UK due to BBC licencing but I have seen other postings of the film on the internet, which may well not be legitimate but if you can find a recording of this film somewhere, I think it is of great value to those of us trying to understand how recovery from a significant bleed can be. My Amazing Brain - BBC Horizon

I hope this is useful.

Very best wishes

Richard

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Hello and welcome to the group. I understand what it’s like having the right side of your body numb and not as responsive. My rupture was in a different location of the brain but I still had most of the same struggles as you do. I was paralyzed on the right side of my body for a month. Even after my first 2 surgeries still had physical therapy for several months. I kept having small seizures so they did more MRI scans and found 3 small blood clots from my first bleed that had spread so 3 more surgeries were done. To this day I’m in great shape no longer paralyzed but still have some effects from my bleed. My right leg isn’t as balanced as my left but it works okay. Also the sensitivity of my right isn’t as much as my left. Let us all no how how things are going and if any questions just ask.

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Hi John,

Thank you so much for sharing your story - I am so glad to hear that you are no longer paralyzed! I will keep you posted with my boyfriend, Kawan’s, story.

Hey Richard,

Thank you for sharing this documentary, going to check it out :slight_smile: And thank you for welcoming me into this site! Very grateful for this forum.