Just saying

Hay all, I have the best and most supportive family ever, but no matter how hard people try to understand how we feel, they just can’t, everyone seems to know what is best for me, except me. I only had my crani 6 weeks ago nearly 7, but I am starting to feel angry and frustrated about everything and about bloody nothing, normally about nothing at all. I think I am frustrating my family but I seem to be or should I say feel like I am sinking down into a pit. I don’t really know why. I know I have had brain surgery, given up smoking, given up all the anti depressants that I used to be on. On anti seizure meds that I never was on before. But I also know that I am alive and AVM free and have people who love and support me, SO WHY THE HELL DO I FEEL LIKE SHIT!!!
Still getting headaches, not as bad so far. Still crying for nothing, I used to laugh about it and think it was funny, but it is not now. It used to be quick and over with but it is so hard to control and hard to stop. I am back to trying to put on a happy face for people. I don’t like were I live, too stressful I feel like I have to walk on egg shells, and don’t feel relaxed, also really feel protective of my son, can’t afford to move and don’t want to hurt the person I live with, he has helped me so so much. I don’t know what sort of job to look for, what I will be able to do, at the moment touch typing etc is not an option because of the weird feeling in my right hand. So tired all the time and I thought I would not be by 6 weeks, I think my family thought that too, 6 weeks up and get back to normal now sort of thing. I am doing so well physically but not well at all mentally. I wanted to feel full of energy, happy and rearing to go.
Just saying

DM

Hi DM,



What you are describing is not that unusual, sadly. Obviously, if you see someone in a leg cast, no one expects that person to walk. Six wks after a crani, you display no outward signs of limitations, so it’s pretty natural for those that don’t understand to think “gee, they look fine, they should be able to…” The brain takes a long time to sort things out after surgery.



For us, our whole family struggled with the recovery, the feelings, and the depression. We spent some sessions with a trusted counselor who helped each of us get in touch with our feelings, our mortality, and our fears. I would suggest that for you possibly and those closest to you.



Depression is also a factor in this. You mentioned you are not on anti-D meds any longer. Do you feel that they might help you now?



My best wishes,

Ron, KS

I hope things get better for you! Just try to look at the positives and allow yourself to feel angry too! It is a bum deal we all got!! LOL

DM, what you are describing is so typical of how so many of us feel. 6 weeks is nowhere near the amount of time it takes a brain to recover from being messed with. And yes because it’s in your brain, no one else knows what’s going on in there. I’m with Ron and think maybe talking to a counselor would be beneficial. I did and also went on anti-depressants for a few months. Those helped and now I’m at the point where I don’t need them anymore. Give yourself time, give your brain time to recover and if you need help coping, ask for it.

One of the side effects of my anti siezure med (keppra) is mood swings. Some people write about being very angry for no reason. For me it causes depression. I am generally very positive. I still am thinking and speaking positive while physically feeling very depressed. I am not a big fan of meds overall so i only taken the keppra and i have been halfing my doses every two weeks to get off of it. Since i started reducing the meds the mood swings have been less severe and occuring less frequently. The other side affects i read about such as extreme exhaustion, takes forever to do stuff, etc I am still experiencing and it has been 5 months since my surgery. Research the side affects of your meds and check with the doc after homework.
Keep shoveling the dirt to the side and looking for the gold, you will find it. Good luck!!!

Hi DM,



I am so glad to hear that your physically healing is going so well!!! I didn’t have a Crani to treat my AVM after my bleed back in FEB, however, I did have the CyberKnife treatment last month and I have had the same exact feelings you are experiencing and they are getting lighter each passing day…phew!!! I tell my family and friends that I am catching up on some much needed rest (cuz I am always tired and it is frustrating) after always being full of energy and rearing to go for 40+ years!!! I have also been talking with a PTSD counselor since all this happened and it is helping me deal with all of the intense feelings you are experiencing. One thing that also helps me is to remember that “Living is Daily” and I try not to worry about things that I have little to no control over. I know this is easier said than done, but this is helping me a bit.



Please know that there is so much bright sunshine heading your way and the pot of gold is waiting for you!!! These dreary days will be a thing of the past sometime very soon. Hang in there!



/Michele

Dont give up. I still have emotional issues two years after the surgery but it gets better. I started going to a Neuro psychologist a year after the operation because work just made the emotional issues alot worse. I’m a CNA and I felt like I couldnt handle taking care of myself let alone other people. I thought I was going nuts because all of the sudden I had this horrible anxiety disorder and I didnt want to have a panic attack at work. I physically felt dizzy, tired and weak all of the time, and like nobody understood me because I looked normal.What do those people know about how I feel? The Neuro Psychologist helped me to understand what was going on inside my head to cause all these feelings and how to try and control them better. I dont believe I’ll ever feel quite normal again after all I’ve been through but, I now am able to function on a normal level. If you get a chance to go see a Neuro Pscyhologist I think it would be greatly benificial for you. Alot of Neurologist send their patients to a Neuro Psychologist post surgery to assess if you have cognative deficits.

I remember being told it takes a minimum of 2 years for the swelling in the brain to go down after a craniotomy
Not to mention anesthesia stays in the body for at least a year plus all the meds you are taking will make you tired. Do not beat yourself up over feeling poorly.

Hi DM. Sorry to hear you about your feelings, but as most have advised, as has the prof (and no doubt greg), and a few of us who are here for you - you have to learn to take baby steps. Learn from the cheeky young man in Tassie - for each two steps forward there will be one step back, on the journey. The others on here have given you some great advice, but there’s one i strongly suggest you ignore. Weaning yourself off medication is something we all WANT to do, but please don’t do that without seeking the advice of your medical team - you know they are the best team in Australia. We’ll chat soon. Tone

Thanks all, my family are great so I hope I did not give the wrong impression

Kia Kaha Taiki

DM

Hi Tony, I 100% agree. Always check with your doctor. I read my reply agian and I guess it could read as if i was suggesting to wean off the medicine. Thank you for the catch.

What i was trying to say only you know you. Do your homework and see what side affects could be a problem and then check with your doctors. In my case my Primary was not familiar with all the side affects and how they were affecting me until after i met with him a few times. The emergency room doctor prescribe it to me before i was ever diagnosed and it was not prescribed by my primary. He did some homework and it was agreed to half the medicine. August is my 6 month mark and i should be off it totally then. With doctors approval.

Hi DM, just some interesting info from the neurosurgeons website at Macquarie Uni - may help you understand some of what you are going through. Also keep in mind that seizures can be brought on through combinations of alcohol, stress and fatigue. Hugz, Tone

What to expect once you have left hospital:

When you first leave hospital you can expect to feel not quite as strong and confident as you did in hospital. This is a normal feeling and is usually due to the fact that you are no longer surrounded by all the medical support. This does not mean to say that you will necessarily be unable to manage as well but is essentially a related to your confidence and will soon pass – usually once you get back into your normal sleeping pattern.

During the six week period between leaving hospital and your post-operative visit to the surgeon in the consulting rooms you will experience some different symptoms which might worry you at the time but are all part of the normal healing process. These include:
• Pain over the operation site – this can develop any time from 2 weeks from surgery to three months and is the ‘waking up’ and repair of the nerve endings in the scalp which have been cut at the time of surgery.
• Swollen closed eye – again this is as a result of the opening of the skull and gaining access to the brain which takes place very near to the eye socket. The swelling will go down and the eye will open shortly following the surgery. When the eye first opens you may experience some double vision but again this will be expected to resolve.
• Low back pain and pain in legs – this is called ‘arachnoiditis’ and is a result of blood (albeit small amounts) travelling through the CSF (fluid around the brain and spine tissue) to the base of the spinal column. This leads to irritation of the nerves to the buttock and legs. This will resolve with time.
• Fatigue – this is a multifactorial result of the magnitude of surgery that you have undergone. It is your body telling you that you are doing too much and that rest is an important part of the recovery period. To build up your strength you should increase your activity daily but stop for short periods when you feel tired.

Hi DM,

I wrote about the cognitive affects that happened to me post op (you should check it out). You are not alone in how you are feeling. Going through a crani is rough and post op it is an adjustment. You literally go from 60 to 0 in a matter of a day.

Just know that in time things will get better and do not let bring you down. Once we and everyone around us learn to accept our “condition” we can move past and work through it. I had my crani 2 years ago and only now, after realizing and accepting things I am able to really move on.

We are alive, we survived…it is time to step back and really just enjoy life.

-best wishes

It takes time, it is very overwelming, you have just had brain surgery! 6 weeks is nothing, give yourself time to recover, the swelling does not go down for at least 2 years. You will have good days and bad days. Personally Keppra messed me up, I fought with my husband all the time when I was on Keppra. Hang in there.

Hi all, thanks for caring

Kia Kaha Taiki

DM