I’m 23 years old, a mother of a very active 2 year old boy. My husband & I are about to get a divorce, he couldn’t deal with my severe ups and downs. I was supposed to get decompressed on Oct 9. But my NS said I needed a psych eval. Now I have to sit in so much pain for longer. I cry so much because I just want to be a good mother. I’m afraid I won’t wake up after surgery. I’m afraid of dying. Is this normal?
Hi,
Oh , Toni, my heart goes out to you...you are dealing with so much..I am sure your feeling are quite normal given what you are dealing with.
But I must tell you that you will wake up from surgery...recovery takes time and is different for everyone. My NS told me that from a surgeons standpoint ...decompression surgery is not a technically hard surgery for them..If i hadn't watch the surgery on a Webcast and at the very end the NS said the same thing...I may have thought my NS was just trying to ease my mind...I hope that helps ease your mind...some.
Pls keep us updated on things..we are all in this together..Chiari can be very lonely....but you have us here.....the other memebers here have picked me up when I have been down and out , more times than I can count. Let others help you, here.
Peace,
Lori
Toni,
I am very sorry you are going through so much. Please know we all worry when we are a parent & have Chiari. We never think we are there for our children like they deserve. Just love your son & let him know you may not be able to run & play but you can read to him and other safe activities. Hopefully after your surgery you will feel lots better & will have a new life with your son. Please know we all understand & are here for you. Lets us know how you are doing. We really do care.
Tracy Z.
I thank you all for your comments. They are very motivational. I’m trying my hardest to stay positive but I’m in so much physical & emotional pain.
You can do it girl! Yes, all of that is totally normal. Just hang in there, fight hard, and all this bullshiz will be over before you know it :) <3 <3 <3 We love you <3
Bill I really hope you’re right! I’m tryin to keep it positive, but I feel like no ones listening to me. Just dismissing me. I have anxiety, now nausea when I sit up or stand? My NS is definitely one that’s pushing me to the side.
Why do you think that? And how experienced is that NS with CM?
Fear of dying is definitely normal…I was a wreck the day of surgery but things went way better than expected.
Please make sure you are comfortable with your surgeon, that is the key. Don’t feel guilty about getting a second or even third opinion.
I took your advice and made an appointment with a different NS one that comes highly recommended in South Texas. I’m just feeling a bit overwhelmed with it all. I’m strong some days, then I have my days when I’m a complete wreck.
Good for you! Go with a doctor that you feel good about! I have never heard of an NS saying you had to have a psych eval before surgery. Why does he think that is his call? Is he a psychiatrist, too? I'm sorry, but that makes me mad! Can't he see from the MRI and the pain you are in that this has NOTHING to do with your psychological health right now? Let us know how your appt with the new NS goes. Hang in there! We are here for you. When is your appt?
The surgery can be terrifying. I found that getting ALL the info I could on it (good and bad) and full color gory pictures kinda helped. The reason it helped me is that i got psyched up and freaked out about it all that I got sick of waiting and wondering what could happen. When you think about it, it's more of a skull surgery than brain surgery. They don't actually cut into your brain for the decompression. They just carefully cut on it. I was happy when the date finally came, cause it meant that the scary part would be over, and everything after that would be an improvement. I had some complications to the surgery, but I'm not dead. Never really even considered that a possibility.
I'm a stay at home dad, and have had further surgery on my spine to insert a shunt to drain of a syrinx. My wife works full time, and i had a very active 2 y/o boy (4 now) to take care of after the minimum 6 weeks of bed rest. Your child will adapt to you, and is not going to judge you. They may be hard on the nerves and make recovery a bit more difficult, but you learn real quick how to isolate muscle groups to carry them since you can't really get around it. Lift with your knees and elbows, not back, upper arms or neck. You can still be a good mom.
The psych eval is a bunch of crap. I hate when doctors pull that $h!t. You have a very real health issue that, though it does reside in your skull, is not a "head" problem. You are not crazy. Don't let anyone tell you that.
My wife has issues in dealing with my issues. We've even talked about separation and divorce. The ups and downs are so hard for someone who doesn't understand how we feel to wrap they're brain around. Chronic nerve issues suck and can be hard to explain. It simmers, and bubbles up till it boils over, and one of us snaps.
We really should communicate more, but I don't like having to explain everyday that "I just feel like crap. Quit making it a bout you, dammit."
So here is how i ultimately feel about that situation, and yes I've said this to the wife (soooo did't help)
"We said for better or worse. This is worse. If you can't handle it, then to hell with you." Maybe I'm just bitter. Who knows.
You are gorgeous. Another, better, more mature man will come along. It's easier said than done, but try to roll with it. Stress only makes the symptoms worse.
I’m assuming I’m making myself sick by over analyzing things and thinking of every possible thing that can go wrong. My nerves are getting the best of me. I’m tired of playing the waiting game. Every day gets harder, and I try to keep it together but it’s so hard. I’ve stayed strong this whole time but now I’m starting to believe that I’m crazy! I isolate myself at home and i stay string during the day when my sons awake, but once it’s his bedtime I just break down in tears. My doctors won’t listen to me:/
That is exactly how I felt. I'm sure having a child makes this all so much more difficult :/
So are things in motion? Like you're talking about having surgery but you're also saying your doctors won't listen to you... I'm just a little confused about what your situation is right now.
If you are just waiting for your surgery date and you're saying that it's hard waiting for that day to come... I found it easiest to just remember that this was something I had to do. I couldn't go on living with the amount of pain and it certainly wasn't going to go away. You're going to be fine in the hands of the right NS, and that has been statistically proven for CM surgeries. Complications are rare and even then, they are totally treatable.
I would totally suggest that you do see a psychiatrist because they can prescribe some anti-anxiety meds at least. Your primary care doctor can also do that.
Anyways, please fill in the blanks for me on your situation because obviously I'm not getting the whole picture here :)
My 2nd NS is the one that said we were gonna do surgery, I was relieved but terrified. He’s the one that wants me to get a psych eval. He’s the one that won’t listen to me, he won’t see me till I get the psych eval. That’s why
Oops. I cut off. That’s why i say no one listens to me. My regular dr tries to understand me but I don’t think he knows much about CM.
Ok, got it :) I had to do the psych eval too. My psychiatrist made me do all the testing that the NS wanted (sleep study, 24 hour holter monitor, barium swallow) and then I didn't even end up with that NS. My psychiatrist also wanted me to get a second opinion and she set up an appointment with an NS that I was previously considering. Once I met with that NS, everybody (mom, psych, me) agreed with his plan and that was it.
Psych evaluations are a strange thing to ask somebody with a symptomatic Chiari case in my opinion. I mean, Chiari affects your brain, so what do they expect???
If you have MRI proof that the problem exists, and you are complaining of pains that are consistent with CM, what more does anybody need?
I remember that I had to explain to my psychiatrist, over and over, how it was no accident that I found out that I had CM. After being diagnosed with fibromyalgia, and a year of physical therapy, chiropractors, and research... only after all that did I request to get an MRI.
When I took that disc home and looked at it.... it was so obvious that even I almost couldn't believe it haha :) So even after all that, I was still getting crap from all my doctors - that's what i was getting to... sorry :P
So I know it's tuff but hang in there and just do what they ask and eventually you'll end up in the right hands<3 I hope this helps. much love <3
this is normal. when i had my surgery i had a low percentage but still high for anyone who got the same of that i could die during the surgery. but if you are a fighter and want to stay alive for your boy you will be fine. if you need help im here. i know how it is, i have type 3 and i only know me who has type 3, but ill be here to listen. your not alone
From a medical perspective.
Many Surgeons will not perform major surgery (unless it is an emergency) without a psych evaluation. I wish I had been able to talk to a Neuro Psychiatrist before my CM surgeries. Maybe we wouldn't all have Adjustment Disorders if we had known what to expect after decompression surgery. We would probably have a better grasp on CM's & life as a Chiarian.