Brain surgery recovery period / Cavernoma

I had surgery on Dec. 4 for a cavernoma in my cerebellum. My surgery lasted 5 hours and I was in the ICU for 24 hours after for observation. Immediately after surgery, I had a little headache but was mostly just tired. Thankfully, my throat was not sore from being intubated but they warned me that I could happen. My jaw was swollen and it took about a week for my face to go back to normal. The swelling was the worst part for me. After 24 hours, I was transferred to the Neuro floor and was released 2 days later. I attribute my release to being young (late 20s) and in good physical shape before surgery. Physical therapy came the day after surgery to help me stand up for the first time. The best advice I have after surgery is to move. Go for short walks - it will help you feel back to normal and will help your body heal. Sleeping was a pain until the staples were removed (10 days later). I found that having a lot of pillows helped me get more comfortable. Sleep when your body tells you to sleep. I hope this helps.

I had surgery in 2006 to remove a cavernoma (often referrered to as a cavernous angioma, though I use both terms) from my brainstem.  I was 21.  So much depends on what part of the brain the lesion is in, as well as how many bleeds, the severity, etc. etc.

The bleed that led to my surgery was my first, and very severe, largely due to the fact it was in the brainstem.  The doctors were stumped at what had caused my stroke, seeing as I was young and in all around good health.  I spent five weeks inpatient after my bleed, and three weeks more out of the hospital before having the surgery.  I lucked out finding the neurosurgeon I did, so felt as though I was putting my life in great hands! My surgery was on a Thursday morning, I was in neuro ICU until Saturday morning, and release Tuesday morning.

I have several friends that went through brain surgery, and were released within 48 hours (as the other person responding said she was as well).  I was able to drive within a 6 weeks, but many people return to driving much sooner, all depending on their situation.

My scar is hidden by my hair, and only partially seen when I wear my hair up.  They usually make the incision along your hair line, and don't shave your entire head, so it is all but completely hidden after the staples are removed.  

I also suggest moving around following surgery, but listening to your gut and doctors to make sure you don't push it too far.  Your age definitely plays to your advantage as far as recovery is concerned.  I also suggest finding a place to complete your outpatient therapy once you are released from the hospital.  They sometimes hesitate to release you if they feel there might be a delay between your release and starting outpatient.  I had a therapy program, and all of my therapists were in contact with my doctors, so they felt more comfortable knowing you will still be under supervision while rehabilitating during that incredibly crucial recovery time in the weeks following your surgery.  

I am going to message you as well with some additional info.  Let me know if there is anything else you need.  Good luck with everything! You are so brave!

I made the mistake of posting the above reply BEFORE joining. Again, let me know if I can try to answer any other questions or if you need anything! - Savannah

My son now 17yrs had a cavernoma tumor removed when he was 13yrs, he was up and about just a few short hours after surgery. We were sent home the very next day. But he was advised by his top notch brain surgeon at CHOP (children's hospital of Philadelphia) to continue his seizure meds for at least 1yr and to restrain from any physical activities, sports. My son played several sports basketball, football and baseball. Only for 1 yr because the hole in your head from surgery needs time to fuse back together so no pressure on the spot where it was cut open from surgery. And in the process they weened him off of the seizure meds. with in days he was honestly back to his old self and once he was finally cleared to stop taking the meds all is great. I was more nervous than he was..lol. and as far as scarring and denting get some Merderma cream any pharmacy carries it even Walmart, it will lighten the scars but my son says every now and then he can feel some weird tingling feeling where his scar is but you can barely see it. I see that you posted this a few months ago so you probably have all your answers by now...so i pray all went well. good luck on your driving test:)

My son had a cavernoma on his brainstem removed last monday. He was remarkably good that afternoon. Tuesday his brain began to swell. He has been a coma since then. The doctors removed part of his skull and cerabellum to make room for the swelling. The doctors are baffled by the swelling. There seems to be no reason for the swelling. There appears to be no brain activity. I do not know what to do. I am praying for a miricle. He is a 28 year old married father of 3 and a police officer. He is at St. Josephs in Phoenix.

I have a cavernoma inside the brain I had a hemmerage and all I've been told is that there treating it with tablets what's the next step any 1 no I had the hemmerage in August and still feel weak dizzy feel like I'm going to go into another fit and its all gonna happen again will this happen to me again or not just need answers I'm scared I'm only 21 aswel

At this procise moment I have double vision and very blurry what shal I do I don't feel tight I haven't long been diagnosed with a cavernoma inside the brain at the back of my head basically in line with my right eye what shall I do I've been the doctors they said my strength and pupils and that seem fine but I don't feel right I've been the hospital numerous times and they've said things are fine and send me home I know somethings wrong can some1 help I'm only 21 aswel

Hi,

Have you spoken to your consultant? 

I am assuming you have a consultant, if not go back to your GP and ask to be referred to a neurologist.  Speak to him about your concerns.

When i was first diagnosed i had similar symptoms, some where stress symptoms and as these improved as i proceeded with treatment.  Take quiet time and try to relax.  If you feel something isn't right then you need to go with your instinct.  Insist on a second opinion etc..

Good luck

DEAN this is the person who started this blog. I am tellin you right now get the operation and get it out. Its ruined my teen years. Now everything is getting back to normal. Every year that is inside your head the chances of it bursting and giving you a brain hemorrhage increase by 1% for all they know you could have had this since birth. Get it out. Please! I know its a big operation but it is a life threatening thing. Im recovering fine after the op and its cured me. Literally today is the 6 months after the op. Im in the clear today! Honestly man you need to get it out. Just push for the op. They cant say no. I was on pills for years and they never worked. Just say you want it out and you'll get it out. If they say no then get another doctor. Please get this out

Hi. Although everyone's surgery can be different, I hope I can help shed some light on your questions and help reduce your anxiety. Four years ago my son was 17 and had cavernoma surgery. He was in the hospital only three days. He felt a little unsteady for about a week while at home, but after that, was doing his normal routine, though stayed out of gym class for a few months.

Before the surgery he was told he would be on anti-seizure meds for a year and would not be able to take his driver's test until then, but he was weaned off the med after six months, took his driver's test and all was fine. There were no side effects from the surgery. There was no dent in his head, and nothing was visible once the stitches healed.

Believe it or not, brain surgery can be very routine, and among the professionals, the surgery is a pretty standard thing. You will be monitored through every second, and brain surgeons take no chances on anything-they know what they're doing.

A cavernoma does not come back; you'll likely be told to get a follow up MRI after some time.

Best of luck to you. Of course any kind of surgery is anxiety producing, but before you know it, this will all be behind you and will be nothing more than a blip on your medical history that you'll be required to list in forms in any future doctor's offices for routine things. You'll be in good hands and back to not even thinking about it before you know it.

I'm a 42 year old American living in the UK, married, 2 children. I was diagnosed  about a year and a 1/2 ago with a cavernoma, located on my spinal column, vertibrae C3/C4. Initially I experienced severe pain in my left shoulder (which led to the discovery of my cavernoma) & numbness in my right leg. The NHS neurologist has prescribed Pregabalin for the pain. He suggest I take Pregabalin for the rest of my life. Says the location of my Cavernoma, means it is in too precarious a location to ever be removed. No doctor that I've come across yet has any desire to remove mine! I no longer have a residence in the US; so no medical insurance (US). My life is spiraling out of control. Does anyone have any suggestions for me? Great group of friends & loving family, but quite alone none the less. Is a bleed something I have to look forward to? Stroke? I really need to have this removed; don't know who to speak to or where to begin. Can't afford to go private.

I just read your post. I really hope u r ok and your operation went well. U r young and hopefully this will help you. God bless.

Hi is this conversation still active?.. Im looking for an answer too about cavernoma since i had surgery last april this year, how's everybody,please share me your experience, tnx...

My son just had this surgery 4 weeks ago- can you answer questions?

Hi
I'm 27., and I had a cavernoma surgery when I was 16 years old in my right head part and lower left (near the ear) part. My neurologist haven't traced what was the cause but they thought it was an inborn or maybe from my 2nd year highschool sport training in taekwondo where I have reached until blue belt. I wasn't taking any medications after my surgery., Yes, I turned down sports, I hate blinking lights that causes nausea and headaches, and I had braces on my left leg which is very uncomfortable since I cannot move well and I feel paralyzed. Six months passed after my therapy I regained my strength and it felt like it was my first time to walk.
After finishing college, and I had my first job, that was 5 yrs after my surgery., (2010) I had my seizure and went back to my neurologist for advice. He told me that They've seen calcification in my head again which can lead to seizure attacks., (I thought I have a normal life now.,,*sighs)
I was very importunate when it comes to my goals., 2 years ago my doctor gave me an additional anti-seizure drug because I once again hadan episode and aura (2014).
I was taking Keppra 500mg since 2005 then my doctor added Topirol 10mg since 2014 since Keppra can't control my attacks anymore. Relieved that last year I was okay, maybe because I was taking time for gym training and last November., I had a 2.5km marathon which made me more interested in running since I'm a 2nd placer. This 2016, I had 3 consecutive fun runs, in 5km category., I haven't been to my neurologist yet but I'm hoping that I shouldn't quit this., because I am enjoying how it feels to reach every finish line knowing that once in my life., I just couldn't walk and get up and sit on a couch.
Please send an advise if i should quit running or pursue it. Thanks