Hi all was wondering if I could get a little more help if you don’t care. It has been a month and a half since my wife had her Craniotomy (July 5th) to remove her AVM. The first couple weeks afterwards were hard but tolerable with her head hurting, and then for about a week and a half she actually started showing some signs off good improvement to we’re she would go outside and to the store “later in the night” and was actually saying she felt a lot better, but these past 2 weeks have been extremely rough. She has pain at times worse than right after surgery, too the point to where she is crying about them. We have been in the ER 4 times to see her Surgeon once and am at the ER again now. Nobody has a clue what is going on, CT shoed nothing, and I am completly lost. Any insight would be great I mean is this normal, does it just happen in a few, will it stop, what are other experiences people have been through? Any info would be greatly appreciated, because between all of this, 3 kids, work, and everything else I’m fixin to pull all my hair out. Thanks to all and BEST WISHES with the battles you are facing too!
I just want you to know I admire you for being there for your wife and children. I have been worried because you haven't posted. I hope it gets better soon for you and your family. God Bless.
From what I've read and heard of other people's experiences from having a craniotomy. I don't think this is normal -- Not 6 weeks later. Then again,.. The brain is so complex and delicate that it may take her longer to get through this part of the healing process (?)
Has anyone done an MRI any of the times she was in the E.R.? Or.. even recently? That will show a heck of a lot more than what a Cat scan does. The way I think is --> With the pain she is having and the drs can't find out why -- then they haven't looked in the right place yet or ran the right test. Just my opinion. I would be asking: Is there swelling in the brain? Does she have any enlarged blood vessels? Is there fluid build up any place? Is it a side effect of the surgery and will this pass?
My prayers are with you and your wife through this.
Ben
It sounds to me like something that you should pursue, but in addition, I'd recommend the following:
Don't know your kids' ages, but Mom needs lots of HELP. Cleaning house, laundry, meals need to be performed by relative, friend or helper for a few months.
Moderate, very moderate exercise, maybe yoga.
Your wife should plan on two or more naps in the day. Rest rest Rest. Quiet, no interruptions, etc.
My wife didn't have a lot of pain after craini, but she was tired. She tried to do too much too soon and it dragged her down. Chari napped every day for over a year, and it's been 10+ years and she still tries to sneak in a nap.
Best wishes,
Ron, KS
I didn't have a crani and I do still have my AVM even though it is way smaller now than before. Anyway my headaches can get to the point that I'm begging my husband to rip my brain out! The weather affects my headaches and any time after I have had a treatment. I can end up in bed for days in pain and wishing life would end. I have noticed for me vicodine has worked wonders for bringing down my headaches so I feel comfortable and able to sleep and relax lay in bed till they pass and I can persue my life and it was before the headache started. Its a lot for my son (age 9) and husband to deal with and see me. But its all part of my journey that I don't like I will ever be rid of once my AVM is even gone. So maybe those pain pills can help your wife maybe not but its worth a try??? Sometimes one works some days I need 2! All depends on how bad my head gets and such. Hope your wife is better already if not I hope this helps and also to know she nor you are not alone!
~Andrea~
She has only had a CT done and nothing else even though we keep asking if they should or even an Angiogram to maybe show something, but of course they have not. This last trip to the ER all they did was give her a shot of Tramadol and sent her home, said to follow up with her Surgeon. So after his nurse finally called us back a day after we tried to get a hold of her. he is wanting her to see a Nuroligist so now we have to figure out which one and set up an appointment. This is about to get on my very last nerve and I am trying not to go off on someone but man it is hard, if only they would make half an effort we might get somewhere. Will keep updated if we learn anything.
They are 13, 11, and 9 so it is a little easier than if they where younger. They just don't completely understand why mommy sleeps all the time, which is all she is doing now. It is hard for her to stay up for a long period of time. The youngest 2 kids are still scared that something is going to happen to her, even we keep assuring them that mommy is going to be ok it is just going to take some time. There father passed away a little over 4 years ago when he was her age, and that has them worried more. Best wishes to you and all.
Thank u and god bless you too. Hope all is well on your end and going good. I have been busy trying to keep her halfway comfortable and kids starting school this past week it has been crazy, but I will try to post more regular. Best wishes.
I had a crani to clip 2 aneurysms a month after my first Gamma Knife treatment for my AVM. I went back to work 6 weeks after the crani, and started getting migraines again a couple of weeks after that--except they changed. The location of the pain was different & I had much more instances of aura. At that point, my neurosurgeon referred me to a neurologist to manage the headaches. He gave me a name of a neurologist that works with him on a regular basis so that they could discuss my case when needed.
She gave me a choice of 3 different daily meds to help prevent the headaches. Two were anti-seizure & one was an anti-depressant that is used with chronic pain. I went with the anti-depressant, Nortriptylene because I had previously had success with it & because it had fewer side effects.
I slept almost all weekend for a few months after going back to work because I was so tired.
I hope your wife is able to get some relief soon.
I am so sorry that your wife is going throw more pain
Did she have migraines or headaches prior?
You need to see a Pain Neurologist.
I got new head pain horrible after my angio and embolism 7 hours of surgery and I ended up getting a nerve block which was so helpful but only last 3 weeks I felt so much better but then it wore off and it was all back. So now I get botox shots into my head they kick in3-4 weeks and go every 3 months it has helped a great deal
My pain neuro said if we dont stop the pain it will be like that for the rest of my life.
They dont know why they are still learning esp about AVM's
I take tramadol when its really bad and use ice and I eat lots of ice cream
I also eat protein with every meal I am on LDN which helps me sleep all night.
Sleep is very important.
Give her a small goal every day even its getting the mail
The kids need to help and give her time to heal
It took me months but I was able to go back to work full time 6 months
Good Luck
Angela
Thank you very much. Yes she did have migraines and headaches before the bleed, the just started getting worse the past 2 years. They were about 2 weeks apart and would last for several days, but the past year has been the worst they have come continuously and last for weeks, it wasn't until her bleed that they actually went into further depth with the tests trying to figure out what was wrong. Hopefully tomorrow we can get something set up for her to see a neourologist and try to get some of her pain relieved. She is one of the people who hate going to the ER but has been 4 times in a week, we went this morning and after 2 shots of demoral, a shot of tramadol, phenergan, and something else her blood pressure was to low for them to do anything else, yet none of it had even started to relieve any of her pain, she was discharged and sent home. They did do another CT and it came back the same. Thanks for the informatioon she feels like she is off in her own world and nobody else has been through this at all, but I assure her she's not. Will keep u up to date thanks again and Best Wishes Mike
to
We are hopefully going to set up an appointment tomorrow to see a neurologists and try and figure out what is causing this. Everything that they have given her or tried since this started a week and a half ago nothing has even relieved any of it for her and all she does is stay in the room in bed either sleeping or with her eyes covered with ice bags. We just feel bad because there is nothing we can do to help her besides what we are capable of. Thanks for everything!
Hello Mike
Good Luck tomorrow- try to see if you can see a pain neuro if they have one they totally get it I feel like normal neuros dont really care about the pain when they can not find something that is giving you the pain. I got a totally different experience seeing a pain neuro they want to stop the pain and they try different mixes of pain meds. I thought for sure they were going to send me to biofeed back and accupunture( which I did try accupunture but it did nothing and the needles actually popped out) and they did not.
So I did get migraines for many years before my brain issues ( first a major rare stroke ) ( second a complex DaVF)
My pain neuro explained since I got migraines before that is where the body normally sends pain lucky us so she really needs to get control of it so its not her every day.
She also needs protein with every meal. I also drank coconut water every day when it was bad. Daily magnesium and also turmeric.
Ice gel packs behind my neck and one on my forehead. Lavender helps as well so I had a small pillow filled with it
Someone on another support site I am on had mentioned a doctor who talks about the 5% rule...
so if taking meds helps 5-10% and then icing takes away another 5-10% and taking magnesium takes another 5% and etc etc you find things that take away a bit and hopefully you can get up to 75%
I am always in pain but the botox really helps and keeping a routine with sleep and protein and supplements. I also only drink bottled coke with real sugar they have it by the case at Costco and sometimes drinking one takes away some of the pain.
I am also take Maxalt for migraines and Frova for migraines
before they will start botox they will do the nerve block which I am surprised they have not done already
What state are you guys in?
Also does she like ice cream I felt the coldness helped my head and got me to eat
Angela
Hey buddy...i had my surgery in February 2011 and still get headaches from time to time...its just something that she will learn to live with and if the scans are clear its probably just the scalp growing etc...tell her not too worry its normal and just keep an eye on it..If it gets even worse over time then let the neuro know... God bless
Thank u for the information, she does eat cold ice cream about every day. We were not able to get a hold of her surgeon to set up an appointment for her to see a neurologist, but after i finally left another message today saying that we were making an appointment for her to see one they finally called back and are suppose to be setting one up. We will believe it when we see it. We are in Tennessee not to far from Chattanooga but also not to far from Knoxville so we have options, everything was done in Chattanooga, but we will travel further for this if we have to because it is to the point to where we have to do something. But other than that nothing has changed with her pain at all not even going to the ER and getting stronger pain meds helps, so she is trying to deal with it the best she can. Will keep up to date as I can, Best Wishes to all. Mike
I have to ask if you have another doctor besides the surgeon. The surgeon does not seem to be working well with you. There could be a hundred reasons, but they don't matter. What you need is someone who can work better with you. Do you have a general doctor that could help talk with these doctors?
In my case, I had seizures and tests, but nothing was happening. They'd run a test and we'd get no comments. Finally, my wife made me take the MRI's to my regular doctor. He looked, found the problem, and started calling people. That's how I was able to get my crainiotomy and gamma knife back in 1989.
That's why I was thinking you could look to some other doctor to get more enthusiastic about solving these problems.
No her surgeon is not being much help at all, and we can’t schedule an appointment with a Neurologist until he does. We are in the process of trying to find her another regular Dr because the one she has we took all her information to and be didn’t even look at it he won’t even acknowledge the thought of doing anything to her in the condition she is in. This is becoming a royal pain in the butt, but we are trying everything we can think of. We just hope that we can find a regular Dr that will. Thanks Mike
Well nothing has changed besides the wife wanting to go postal on her surgeon, he is still being a pain and not setting anything up with a Neurologist and they won’t make an appointment for her until her surgeon sets it up with one of them. Any ideas on how to get this moving a little faster besides traveling? Even though that is the very next step that we are about to take. She is still having horrible headaches beyond belief and is on an emotional rollercoaster that is driving me up every wall possible. Thanks to everyone who has taken time to respond it means the world to me. Best wishes to all. Mike
I'm sorry about the delays, Mike -- if you phone every day, perhaps setting up with a neurologist will become more of a priority? Sometimes the squeaky wheel gets the grease. Hang in there -- I'm very thankful your wife has your support during this rough time.