Quantcast

AVM Survivors Network

Lasting effects of AVM/Craniotomy/Gamma knife


#1

I am 3.5 years post craniotomy after my AVM ruptured. I am almost 3 years post Gamma knife surgery. I have made a remarkable recovery and am working full time. However, I would like to ask others out there with a similar story to mine what lasting affects have you been left with?
For me although I physically look fine I am still left with severe tiredness, anxiety and stress. I am currently off work with the last two symptoms. I thought I had coped beautifully with what happened to me but over 3 years on I am struggling more than ever. I have put over 3 stone on and have no self esteem or confidence. I am currently having counselling and it has come down to that I have never really dealt with what happened to me.
I had a sudden violent headache and awoke weeks later after having emergency surgery. It took some time before they diagnosed an AVM. As I said earlier I have made a fabulous recovery, far better than I was told I would so why am I still suffering these symptoms so long after the fact?
The outcome of my Gamma Knife surgery will be revealed in June 2015. I have a right frontal lobe AVM that is sitting on my optic nerve. I do still have headaches but I suspect these are stress related.
Has anyone else out there suffered these symptoms since they had their ops?

Thanks for ready guys
XXX Yvonne


#2

Hi, I’m Sian and had my Craniotomy in August 2012. After the surgery I HAenjoyingeel happy and make the most of my life. I had suffered badly with my bipolar disorder and had put on stone after stone in comfort eating. This was before the brain haemorrhage on Christmas Eve 2011.
After surgery I focused on making the most of and appreciating my life, my best friend/fiance who had always held my heart and 3 crazy beautiful children.
Now, I have lost nearly 6 stone (check out the profile picture dudes :slight_smile: I am enjoying my kids (well…most of the time) and my fiance because I’m looking after me first.
I am left with a shocking short term memory and bouts of depression. However, we’ve come through fecking brain surgery! Nothing can hold us back!


#3

My son who is now 9 had a similar story to yours and he is thankfully alive and well. He suffers on and off from anxiety. I would juts say to you, it is perfectly natural to feel what you feel. You went through something so major and life-threatening that how could you not experience PTSD? I think you need to work with a therapist and thank God you are alive and doing beautifully well. Maybe you could take your experience and help others?


#4

Yvonne,
I’m about a year & a half out With very similar symptoms. I’m about 65%, lost my left perifeial vision, so no driving. Short term memory, cognitive skills & multi tasking. Severely depressed in counseling with lots of prayers. Lost my home, can’t work but hoping to volunteer.
Good luck, stay in counseling it helps.
Debbie Raynes


#5

Yvonne,

I am 9 years post surgery and have issues with fatigue, headaches and short term memory loss. My headaches are definitely stress related as I am working full time and have 2 tween-aged children who are very busy. I am seeing a new neurologist this week to see if he can figure out what's causing the return of my headaches. GOOD LUCK TO YOU!

Karen


#6

Yvonne,
I think you're awesome! For me it's been 16 1/2 years and every day presents me with something new. I was only 10 years old when my AVM ruptured and I was in a coma, etc. I too made the "miracle" recovery. They said I wouldn't drive a car, go to college, or be able to do so many things and I have. I still suffer with Anxiety and get tired sometimes.It's like every new phase of life brings back the fear that "I can't do this." I try to remind myself that I'm the special 1% of humans that AVMs happen to and that my "normal" is so different than anyone else's.


#7

It's interesting how you all have similar symptoms.


#8

Hi Yvonne,
I'm Charles and I had my bleed and craniotomy 20 years ago at age 30. I'm glad to hear about your recovery. It sounds as though we've had similar experiences. I have a few minor physical issues but look perfectly fine on the outside. I believe definition of PTSD applies here.
The fatigue is one thing that has stayed with me over the years. Try reading,
http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/

As for the weight gain, it comes with the fatigue. You must push yourself to exercise. It's therapy for the mind and body. I have always hoped that it would get easier over the years and I could relax more. But, my new reality is that my body requires extra maintenance to keep running smoothly.
I was lucky enough to find a great therapist that helped me accept the "new me" and the loss of some of my physical abilities. The thing I've notice on this support site and others is that no two experiences are exactly alike. So, don't allow this define you. Be well
Regards,
Charles


#9

Hi Yvonne,

I am so sorry for all that you are going through!

I was diagnosed one year ago with a Right Thalamic AVM. It was found during a CT Scan of my sinuses. I am 51 years old and have had no symptoms...not even headaches. Dr. Spetzler at the Barrow Neurological Institute recommends no intervention as my AVM is "too deep, too spread out, and in too important part of my brain". He says to take my chances...

Another doctor at Barrow, Dr. Nakaji would like to perform Gamma Knife on my AVM. He says it will probably take two treatments due to the size of my AVM.
My concerns are memory loss, stroke, brain swelling, etc from the Gamma Knife. I am interested to what others say about post-Gamma Knife.

It does sound like you never dealt with the huge emotional and physical effects of your ruptured AVM, surgery and Gamma Knife. You are on the right path with counseling. I hope you receive relief soon.

Renee


#10

Hi Yvonne

I’m 10 years post treatment (embolisations and craniotomy). I’m a bit unusual here as my AVM never bled, instead it was discovered and treated (many years later). I already had a weakness on right side and no right side peripheral vision, but there were no more physical problems from treatment. I had social anxiety before and surgery made no difference and no cognitive problems before or after. These years later I have been left with epilepsy which is mostLY controlled and depression. The depression hasn’t gone away and I am on medication.



Part of my post is to say try to be kind to yourself, though it is hard. Remember your brain had not just the treatment that left me with these side effects but also the actual bleed so you are a remarkable strong person each and every day.



If you take medications they can affect tiredness and weight loss/gain as can other things such as anemia. It might be that tiredness/weight gain is simply part of your recovery or would have partly been there with the busy life you lead, but do get these other things ruled out.


#11

Hi! Mine bled about 3 years ago (a little bit more by now). I had a stroke and was in a comma for about a week. I dont remember much of the first month or so. My AVM was in the area that controlled my right body (parietal/temporal). Physically, I still have a very weak right side. I can move my arm but I do not have precision or fine control (I cannot write). Same in my leg: I have very limited movement on my ankle. My leg in general is weak. I am already walking with a cane but it is awkward and dangerous. Ive fallen and taken my mother on my fall before. But I learn from those events. I still get depressed sometimes (loss grief). But I know how to deal with it. I tell myself: "yeah, life dealt you a crappy hand, but you can overcome it, you can overcome anything!" And so that is what I am doing. All in all, the way I look at it is, yeah, something really bad happened, but there is nothing that can bring me down. The outcome of MY Gamma Knife will be revealed in September of this year. I do have headaches every now and then. Doc said sometimes after Gamma Knife the draining vein gets squeezed or something like that and it could be that in my case. While I think your headaches are normal, please do ask your doctor about them. Better safe than sorry.


#12

Yvonne:

Discuss your symptoms with your doctor. I don't want to scare you but you should be aware that the radiation from the Gamma Knife can have effects long after the procedure. Six months after my daughter's Gamma Knife she ended up in the hospital with massive cerebral edema from the radiation. Prior to her actual admittance to the hospital she was suffering symptoms that we simply attributed to the surgery in general. Well those symptoms were in fact from her brain swelling and they became progressively worse. Again, I'm not trying to frighten you, but always better to be a "bother" to your doctor than sorry later. Best wishes for a full recovery and a long, happy, healthy and productive life


#13

I am 50 plus years post bleed and craniotomy. I was 9. I still take seizure meds, cannot drive because I lost left vision in both eyes. Get depressed on and off, have anxiety and ADD, OCD. I was married, but Norm died 18 years ago. We have a wonderful son who lives far from me, but they just had a beautiful baby girl. I have so much to be thankful for, first the fact that I am alive 50 years after a craniotomy done in 1959.

beans


#14

I think many (if not all of us) have suffered with short term memoy loss and depression...but the geat thing is = we have dealt with them! :) Like you said: "We have survived Brain surgery (ies)" there is nothing that we cannot do now! <3


#15

Thanks for your reply Sian. I too am suffering with short term memory loss. I wish I could be as positive as you but at the moment I am just struggling to get through each day. I am positive I will get through it. Thanks again. xx


#16

It is so comforting to have such support and to feel that I am pretty normal in the grand scheme of things. I have been told it is PTSD I am suffering with. I appreciate your thoughts and thanks for sharing, xx


#17

Bless you Debbie. Yes, counselling is helping. I tend to always pray for others but never for myself. I am very lucky to be 90% back to being me. I hope you can get past this difficult stage in your life Debbie, I'm here if you need a friend. Lots of love xxx


#18

Thank you Karen, I too have the added stress that teens bring lol! I hope you can get to the bottom of your headaches. Thank you for your support. xxx


#19

Wow, no you are awesome! Maybe i need to look at myself a little differently as in that 1%! Your 'normal' statement has hit home. Thanks for your support, continue to be awesome xxxx


#20

Yes it is Rosemary, makes me feel that I am not alone and no so different xxx