So, I had open crani with clipping on March 20th- 3 weeks ago today. Everything went pretty well. I did have a horrific cycle of migraines while in the hospital and needed to stay an extra night because of them not being under control. When I got home I realized that I can't see very well out of my right eye. Reading is VERY difficult now and everything is blurry when both eyes are open. I had a follow up with my surgeon yesterday (two weeks earlier than expected). My CT scan looks good. Annie is "cured". My surgeon can't explain what's going on with my vision because he said "I didn't have to get as close to your optic nerve as I thought I would. You don't even have significant swelling. I can't explain why your vision is affected." He wants me to see an ophthalmologist. I told my doctor that I feel like a wreck. I wake up feeling okay in the morning and after just a little while I am SOOOOO exhausted. I feel like my head is spinning- I am so overstimulated by even the slightest things. I am SUPER emotional and anxious at times. I want to sleep and I can't fall asleep. I told my surgeon- "I feel like I've been hit by a bus"- his reply was "you were. A very big bus called brain surgery. Basically you have a form of post traumatic stress disorder now and it's going to take a while to get back to normal."
I don't know what I was expecting in terms of recovery but I wasn't expecting to feel so emotional and drained. I thought because I am young and in good health I would feel okay. i feel like I'm being a bad mommy to my babies right now- it's so hard to be patient with a two year old when I just want to climb in bed and cry. Then after having a good cry I feel bad because really this isn't a big deal compared to what so many other people have to deal with. Heck, my annie is FIXED. It didn't ever rupture. I will be able to soon take care of my babies. I have so much support. My mom has been staying with me to help take care of my 29 month old and my 9 month old. My church family has made so many meals. My brother and sister in law flew in from out of state and cooked enough meals to fill my freezer. God is taking care of me and my family- so, what the heck is wrong with me that I feel so awful?
Has anyone else had any of these feelings or been diagnosed with ptsd post surgery?
My surgeon says if I don't feel better within a reasonable amount of time that there are actually neurologists who specialize in these types of disorders post crani.
I know this is very long and rambling. I appreciate anyone who actually read it. I don't want to just have a pity party- I am SO grateful that everything has gone as well as it has. Please tell me I'm not alone in feeling like this.
Rearranging brain matter is never a good thing, yet there is no other way to the cure. That you didn't rupture is a good thing. The headaches seem to be hitting a little early. It could be a good sign because if more nerves were severed in the surgery, it would take much longer for them to regrow and this regrowth is never predictable so things seem stable until one day the pain hits. It took six months for my wife's first migraine following clipping in 1994.
Whatever you do, don't let your Neurosurgeon pass you off to other Doctor's because believe me you'll get lost in the loop and he/she loses ownership (although it is a good idea to obtain the services of a Neurologist for future evaluation. You will have ongoing issues (high probability) and their records and ongoing ownership will help you obtain the services you may need such as any disability recommendations for workplace, private, or government insurance. It will be important for your family to understand that you are a new person as a result of this kind of surgery. They, and you, will need patience as you rebalance yourself over the next few years.
There are Neurologist who can help with the pain but I have not encountered or met any Doctor specializing in post aneurysm disorders. I wish I had better news, but would prefer you know not to be led astray. Any questions, feel free ask.
Hi Cordie....I was coiled, but non the less had some awful things happen to be and almost died...and after a few months home and recovery...I went to my Neuro and told him of some of the things that had been happening to me and he told me I had "PTSD"...2 years later and the PTSD is gone for the most part...it takes time to heal...and you are so early in the healing stage...most crani patients don't start to feel their new normal for at least 1 year...~ Wishing you a better day ~ Colleen
Thanks for your reply. As far as headaches hitting early- This annie was an incidental find because of a change in my headaches. The cycle of EXTREME migraines I had the first 5 days after surgery were the worst headaches of my life. My surgeon said that he irritated a certain nerve that could have triggered the cycle. While I was in the hospital they even tried trigger point injections in the back of my head and my forehead to try to relieve them- NOTHING worked. Now the headaches are not migraines, just an annoying everyday headache that I had been having BEFORE surgery.
I don't think that my surgeon was trying to pass me off to another doctor. I live about 3.5 hours from where I had surgery . I got a local neurologist before surgery just so that I could have one to follow these headaches.
Anyway, thanks for the reply. I understand what you mean about getting lost in the loop- I definitely don't want that to happen and I plan to make sure I keep following up with my surgeon in case I need him in the future.
Thanks for sharing and for the encouragement. I know this is early in my healing- it's just sooo hard to take it easy and be gentle with myself with I have these two little babies. My 29 month old is a disaster right now- SOOO clingy and whiny and just a mess. I know it's partly typical two year old behavior and I also know it's partly because of everything that is going on with me not being myself. Every morning she wakes up and says "Mommy all better now?!" Poor little thing.
My 9 month old is the easiest baby on the planet. I do think that continuing to nurse her is a bit difficult on my body while I'm healing- but it's SOOO important to me to give her my milk that I am doing the best I can to continue.
How are you feeling now ? Is the vision improving? You are brave to have gone throught the surgery and working hard to take care of your family. Good luck with everything !
Cordie all of you with young children going through recovery of brain aneurysm I think you all should get a medal...I can't even imagine...Bless your Heart...if you have any family to help out...please ask ... you need to rest and heal too...Gotcha you in my Thoughts ~ Colleen
I most difinitely don't feel like I should get a metal- I don't feel like I had much of a choice in this matter. I NEEDED to get the annie fixed so I could be around for my precious family.
I am very blessed my mom has stayed with us until yesterday ( one month post op!). I'm still tired- but it's getting better all the time.
I have to say one thing I've learned from this is that when I'm feeling a litte better I really need to help other people more and not wait for them to ask for help. Also, if I tell someone"anything you need, I'm there" - then I NEED to really be there. There have been multiple people that I *thought* were my friends and when I've asked for help I haven't gotten a response. Then, people that I hardly even know from my church have been here to drive me to appoinemnts, make me meals, go to the store for me.... all because we are part of the family of God. I'm amazed at these people and I WILL help others.
Thanks for asking.... My vision is not improving yet. I have another eye doctor appointment tomorrow for one last test. As of now it seems that there is nothing wrong with my eye and any vision problems I have is related to my brain not processing the information that my eye sends it. .... it may or may not improve. I just keep telling myself that if a blurred vision is the worst that happened after major brain surgery then I need to be THANKFUL, thankful, thankful!
I am so glad your mom has been able to be w/you...and your other family...even when family loves dearly, sometimes they cannot, for their health, distance, work, etc. You have been blessed with that and the help of your church members...
Is it possible for you to be able to get a nanny in to help part time if not full time? With summer coming on, even possibly some neighbor teens who may want to work a bit... able to give you help...It is so critical for you to have your rest during your healing...
Last...is there a (blanking on proper term) nursery where your 29 month old could have some time learning ad meeting new friends / games, whatever? that would give /fill-in, fun, adventure, enjoyment...while giving you some rest time?
Some of my friends do give a lot of help through their churches...a peer of mine, not too far away, was blessed by the help of her church members.
Prayers for your rest and your health for the enjoyment of all you do...
When you talk w/your eye docs...and/or neurologist...please ask them about vision therapy...
My neurologist recommended it...it is not overnight...VT takes some time...I had an hour a week appointment...with daily homework...(over time I was almost addicted to the home therapy)
I did not regain complete vision...tho the pain in my right pupil was stopped... over time, now, some things "pop back" when I am fatigued...When I am out for my next eye check, I will ask about some repeats...