It’s been 5 months since my aneurysm surgery I still have very bad headaches and my equilibrium is not back to normal is this normal?
My biggest problem is people don’t understand and think I’m over exaggerating my pain I just don’t feel right your comments will help.
Hey there Dawn,
Welcome to Ben’s Friends.
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends.
You ask ‘…is this normal?’ and unfortunately for some of us the answer is ‘yes’.
I’m also sorry to say it like this but you are also correct in saying “…people don’t understand…”. Often others have the idea that all surgery is the same ie They operate, fix the problem, 6-8weeks later and life returns to normal. I call it the “broken bone theory”, but we’re not talking about bone or muscle. We’re talking about the brain and the healing process is totally different when it comes to the brain. Some people think that once the surface wound has healed, it’s all fixed. Well, don’t I wish.
My balance has also been an issue. Only this morning I had to have an MRI scan. At the end of the scan I go to stand up, see stars floating around and had to grab the table so as not to fall over. My last neurosurgery was back in '13 and still today I have issues. Some days those issues are minimal, some days they are overwhelming. Some people do not understand this, well, nor do I. It used to be that I had 2 speeds, full throttle and stopped. Now, I’m lucky to get to 1/2 my normal pace and then only for a limited time. I have learnt I need to manage for ‘today’. I can go all day, but after a full-on day it can take me 2 days of rest to recover. Some people think I’m in this position by choice, who on earth would choose THIS? Not I, that’s for sure.
You are not alone.
We know all of this because we live it too, so, come talk to us.
Merl from the Modsupport Team
Welcome Dawn! I’m the Moderator here on the BAF Support Group which is a pretty big group. I’ve only had endovascular procedures but I’ve had four repairs if I count the big one when I ruptured. Each repair and each diagnostic angiogram has for the most part set me back, some more than others. My balance was really affected, I walked like a drunken sailor, couldn’t do stairs as my brain didn’t realize I wasn’t on the stairs any longer, shoot even stepping on the scale at my doctors has me a bit wobbly! I had and still have some other issues but I think of them as it’s my job to try to overcome them.
Overcoming issues after brain surgery is by no means easy. It takes an enormous amount of effort. You just can’t give up and try a little more each day, if it sets you back, go two steps back and start walking forward again. For balance I did PT and then Tai Chi. When I first joined here back in 2014, there was a plethora of members who did Yoga. I had to start Tai Chi in a chair but I practiced what they taught me at home all week and then would learn three more moves the next. The thing that was the same in both PT and Tai Chi was tightening my core.
I had to relearn to socialize and that took a long time because noise and bright lights did me in as much as trying to follow a conversation. I am a lot better now, but not where I was before I ruptured and that’s ok. I do keep working at it and I’ve been working at it since Nov 2013!
My Neurosurgeon’s mantra is “hydrate, eat protein, hydrate some more, rest if needed, hydrate some more, repeat”. That may help you as the brain needs a good bit of both to heal and we don’t do it as much as we should on a daily basis.
Look to see if you have some type of adult community service that offers Tai Chi or Yoga. You will have to take a deep breath and get to the facility where they are but it may be the ticket to get over your concerns about leaving the house. You might also reach out to your PCP or Neurosurgeon for them to write an order for PT. The PT can evaluate you and trust me, they can give you all kinds of tricks to improve balance.
Keep in touch, as Merl says, this isn’t a broken bone and we all get it here!
Thank you so much for reaching out to me I feel like I’m going crazy and everything you are saying makes so much sense and I do have to remember the surgery was 5 months ago the scars are healed but I still four plates in my head and I have dents on the right side of skull big debits they had to break my jawbone as well and I still have a hard time eating one day at a time thanks again for reaching out to me I so appreciate it
Thank you for reaching out to me it helped a lot finally somebody believes what I’m going through and not going crazy I guess all we can ask for is one day at a time and for me it’s only been 5 months so it sounds like I’ve got some healing to do again thank you for your response!
2 posts were split to a new topic: What’s my purpose God?
You’re doing OK, you’re just as crazy as the rest of us.
With some of my post surgery symptoms even the medicos look at me questioningly. I had neuro tell me outright “Well, that can’t be happening. I didn’t go anywhere near that region. So it wasn’t anything I’ve done…” Well, it was happening. I didn’t go to the Dr’s because I like the place, so making out it’s all imaginary? Why? This is all too real to be imaginary. Post surgery I had a nurse in the hospital tell me “ohh it can’t be that bad…” as i’m laying on the bed, clutching my skull, in agony. I told her to lay on the floor and I’d boot her in the head, then she could tell me all about it. She was offended, but nowhere near as offended as I. Honestly, they have no clue just how bad ‘BAD’ can be.
The old brain theory used to be that certain regions controlled certain functions. This has now been shown to be very false. It’s a little better understood now that regions of the brain all work in unison for functions to occur and not solely a region on it’s own. So the idea “…I didn’t go anywhere near that region…So it wasn’t anything I’ve done…” is irrelevant, what I know is I’m symptomatic. The question I have is ‘How do I manage it all better?’.
When it comes to neurosurgery, we are all wired differently and how one individual recovers vs another can be totally different. I was given all of the % of the likelihood/probabilities of a negative outcome with each surgery and we just hope/pray/beg we’re on the positive side of those percentages. Some patients bounce back really well, some can have a bit more of a challenge and then for some it can be life altering. Nobody, not even the dr’s, can give an exact outcome. I ‘try’ to look at it this way "could it be better?? YES!!! But then, Could it be worse?? Most definitely and I’ve got to be thankful it’s not.
Merl from the Modsupport Team
Prople who have not had brain surgety can not gauge the level of pain we feel after brain surgery nor the time to heal and other med facyors.
After my anerysm ruptured i slept with heat and cooling packs for 6 months to curb the pain all the while on pain meds. It will get better just be patient listen to your body. I bought black out curtains. Family would call me lazy or just need to deal with it. I said I when someone touched ur brain then u get an opinion. I sometimes sleep 10 plus hours on the weekend. BsS ruptured in 21 i still take out c1 day at a time. Don’t rush yourself.
I sleep a lot too, legs are weak ,all I do is work my brain for my job and the pain gets so intense. Thank you for your comment it really helps!
I am trying to join group as I had any surgery and can’t get in need help
You’re a member! Looks like you joined March 2014. What do you need help with?
Give me your phone number I will call you and help you
Welcome to the group. I know I agree with Merle and motrub it takes a long time I had mine in 2016 a rupture and I still find today I have the deal with pain every single day. Unfortunate to have friends I’m colleagues who understand and help me they can now see you when I’m having trouble with just about losing it will come and hold me so I don’t fall down. 5 months and you’re doing well to be back at work. But take the time you need. Don’t let anyone tell you when you should be better just take the time do what you need to do and don’t push it. I do find I have a lot more time without pain now. And I have a friend who’s also had a ruptured aneurysm in 2009 and they are doing super now. You’ll find this group to be very supportive I found that they answered my questions but I also found that reading other people’s positions and reaching out once in awhile it’s helping me heal as well.
Its comforting to know that you’re not the only one.
Thank you for your response I truly appreciate it and talking to other people the last couple of days has really helped tremendously!
Hello all my wife just had a craniotomy for her right posterior communicative artery brain aneurysm , PCA. It was August 2 and she was sent home on the 4th since she was doing so well. That didn’t last. I had to bring her back to the neuro unit on Sunday the 6th. She stayed in for 5 days. They did all tests, blood, etc, and made her comfortable with medication. She has spinal fluid and pressure on her right eye. She’s extremely exhausted and has constant pressure where they pulled the muscle. Ever since then she seems to be slowly getting better. It’s been 10 days and she’s not in pain but “just doesn’t feel right” she says. Does the spinal fluid dissipate on its own and when? The docs and nurses say yes but I feel like it’s taking forever to go away. She extremely irritable and I know this is typical as well. Just wanted to jump in and see what everyone else experienced with this surgery. I’m her caretaker and see slow progress but I want to make sure this is typical.
Welcome to Ben’s Friends.
My name is Merl and I’m a member of the Moderator Support Team on Ben’s Friends.
I too have had issues with CSF (Cerebrospinal Fluid). The fluid plays a couple of roles. It helps nourish our central nervous system and removes waste. It cushions our brains during an impact. We produce around 500-600ml (a pint) of CSF daily and we have approximately 125-150ml flowing through the system at any one time. The fluid is produced within the ventricles of the brain by cells called the choroid plexus and flows through the brain’s cisterns and around the spinal cord and is absorbed into the blood stream. Our bodies establish the route of the fluid in our mother’s womb, and it is sealed within the skull/spinal cord. Within our skulls there needs to be a balance of CSF, blood and brain matter. And then along comes the surgeon and disrupts that balance. It can take quite some time for our bodies to adjust to these changes. When that balance is out of balance, I can become very symptomatic. I often explain it as ‘I feel like my eyeballs are going to explode from my skull’ the pressure behind them is extreme. At times I’ve been tempted to dig my eyes out with a teaspoon just to relieve that pressure.
10 days out from neurosurgery is VERY early on in her recovery. Neurosurgery is unlike any other operation and although the physical wound may be healing well, the brain itself can take longer (and for some MUCH longer) to settle. With many muscular/skeletal procedures the medicos often give a 6-8 week recovery period, but when it comes to the brain it can take longer, much longer to find our ‘Normal’ again. Our bodies need time to adjust to the changes. Those adjustments are not a straight line of progression. I have good days, bad days and days you wouldn’t wish on your worst enemy. I have learnt, I need to be super flexible to manage, just for today. It took me months to find my ‘New Normal’
I wasn’t irritable, I didn’t have a problem, it was everybody else who had the problem .
It used to be that I had the patience of a saint. Post surgery my patience was nil and the slightest thing could set me off. It wasn’t just the person, it wasn’t just what they’d done to set me off, but add that to my symptoms and my cup it overfloweth, over anybody in the vicinity. NASTY. My poor wife, I don’t know how she puts up with me sometimes.
You say you are seeing slow progress, but it is still progress. Recover takes time and nobody, not even the medicos, can say with any surety how long that recovery will take. We all recover at our own pace.
Merl from the Modsupport Team
Welcome to the group Dawn!
I’m 3 years post rupture, and I didn’t get the help I needed in the beginning. I just started back at square one about 6 months ago, and for me it’s no easier now than it was in the beginning, however, I’m more determined now, than I was then, the battle is mine, and I’m going to fight. I’ve also learned that, support groups are so important for us, because we all understand, even though our situations are different, at the end of the day we’ve all got something in common.
It’s hard for people to understand what they can’t see; the pain, the fatigue, or the confusion we feel, be patient, do your best to stay positive, try not to worry about what they think. I even started journaling, I bought a gratitude journal, it really helped to just get things off my mind, and if you have questions, just reach out to the group.
My equilibrium was off for probably the first year, I even got car sick, which was new for me. The headaches lasted for a long while for me, and slowly faded away, however, on occasion, I’ll get one the might last 3 or 4 weeks. My neurologist put me on Amitriptyline for a while, and then switched me to Nortriptyline, which seemed to work better for me.
Again, welcome to the group, I think you’ll find that just being able to reach out to people that can relate to what you’re going through, will help you out a lot.
Hi Merl very nice to meet you. Thank you for the explanation on the cerebral fluid. That makes sense now. YES! That is the same feeling in her right eye, the side where her surgery was performed. Her surgeon also pulled her jaw muscle on the right side “extra tight”, when he sutured her, he said. Another source of pain for her. That is also slowly getting better. I can handle her irritability. I just want reassurance that the fluid will dissipate on its own as will her eye pressure/pain. Reading others experiences and your response has helped immensely. We had no idea what the recovery was going to be like even when her neurosurgeon explained what can/will happen. I want to make sure that I am doing everything I can for her and her recovery. All she wants to hear is “you’re going to be alright”. The more I know about what is typical and what to expect, the more I can reassure her so she will be less anxious. Another question, she is sleeping a lot and not mobile much. I try to get her up and moving for a walk around the living room or kitchen, and she gets up to use the bathroom as well. I feel like the more sleep she gets the more healing for her brain. I know the concern for blood clots is there. She sits upright when she’s awake. What’s your take on sleeping as much as she can 11 days post surgery?
Thank you Karen I already feel better this past week knowing that people are going through what I am going through and not going crazy this group has already helped me tremendously I have a CT scan scheduled next Saturday anxious to see you what they say as well thank you for your response!