How to deal with the constant struggle

[Ray_harv]

Hello! I'm Ray I am 15 and I got diagnosed early last year with Chiari Malformation 1 but I have had the symptoms (mostly headaches) since seventh grade. I got a depression surgery late last year. I chose to get another MRI because my symptoms stayed consistent. My Neurosurgeon said that I should get another surgery because the last one didn’t help. Then again this came from the man who said I could continue playing volleyball 14 days after my surgery. My mom being the protective smart mother that she is doubted the surgeon.

  My parents got our insurance to accept an appointment with one of the top Chiari surgeons in the US. Once meeting with him we learned that I had generated a complex chiari over the time since my last surgery. When we were coming to the topic of whether I should get another, more intense surgery he asked me the question “How is your quality of life?” The question kind of took me by surprise. I mean how am I supposed to answer that? If I told him all of what I am thinking it would be something like, “Well I have played sports all my life and I can’t do that anymore which *****. Every time I cough, sneeze, jump, or wear the rubber bands on my braces I have to lay down because of a headache. I can’t do nearly any of the physical activities I used to be able to do. But I am not at poverty level and I have good grades soooo.” My answer ended up being “Yea I think I’m good.”

  Now that my story is out of the way whewww. Here is my real question. How do I deal with the constant struggle that I can’t do anything? I am a sophomore in high school. I am supposed to be at my prime; running, jumping, playing sports. I mean even above all that I can’t wrestle with my dad anymore. I can’t do the fun bonding activities I used to do with my family.  

  I know that all this sounds totally selfish, but trust me when I say I don’t bring this topic up with hardly anybody, so this is literally my venting of months and months built up. I realize the God’s journey for me is different than most peoples and I am okay with that. I just want to learn how to handle it.
   Anyways if anybody can answer my question I would greatly appreciate it. :)

[gjjl]

I first want to say that I will say a prayer for you. You are so young to go through this type of surgery and deal with such a complex condition my heart goes out to you. I totally feel your frustration in not being able to do the things you want to do. I'm 33 and I am currently struggling with that very feeling. I unfortunately had 2 surgeries in the past 2 months so that's why. I know it's difficult seeing your friends doing things you want to be involved with, I can't imagine being your age and dealing with chiari. Make sure you ask about related conditions and get them ruled out so you know for sure you're only dealing with chiari. I can not say for sure that you will be able to do 100% of what you did before you're diagnosis but I think in time you may be able to do some things. In my case I will not be able to do theme parks or water parks. I can not use my bowflex for a year, no work outs other than walking. Along with what another member said I am shocked you had to ask for another MRI. My 1st surgery was Dec 29th. I have MRIs scheduled for 3,6 and 12 months. That is the norm with decompression surgery. You may discuss your doc with your parents and see about a 2nd opinion. I hope you stay strong and proactive when it comes to your health. This path of chiari is twisting, bumpy one for sure but you can live a very good quality life. Everything is still fresh if your surgery was late last year. Time is your friend in this case. Best wishes

[lasel22]

Hello. From what I read from your post it sounds like you are still symptomatic because you have a complex chiari and need another surgery. If you told your new neurosurgeon that your quality of life was good then of course he would not recommend surgery.  Is your quality of life actually good or were you just being stoic during your appointment? From what you wrote it sounds like you aren't too happy with your quality of life.  I guess you will know when you "can't take it anymore" and want to revisit having surgery and accepting the risks that come with it. My NS wanted me to try to get back to a normal level of activity for a period of time and then report back to him with how my symptoms changed. I had become so limited I didn't do anything anymore and when I tried to "function" again I felt much worse and decided to go ahead with it. I only need the decompression surgery and have done ok.

You could always see how things go and contact this new surgeon again in the future if you'd rather try surgery than continue the way you are. At least you found a specialist that understands your condition and can provide help if you need it.

[selmaS]

  Hi Ray_harv and welcome to the Chiari forum.

I will send you a PM as to whom our surgeon was.....I hope we do not have them on our list of Drs.....

14 days after surgery and you could play soccer?.....Sorry, that is not from a true Chiari specialist....and you will cause set backs if you do not allow your body to heal.

Plus, I am shocked you had to request a MRI post op...most Chiari specialists do one at different times depending on the patient but everyone gets a post op MRI.....

Did you have ALL related conditions ruled out? Syringomyelia, retroflexed odontoid and other conditions should be known b4 surgery is considered an option.

I was 48 when I had surgery and for several yrs post op there were many things I could no longer do.....but I am now able to do some and I am in my 50's....

Not knowing what comorbid conditions you have,  it is difficult to say if time and avoiding certain activities will help or if surgery is yet again an option you should consider....

I would opt for a few opinions from a few true Chiari specialists....make sure ALL related conditions were ruled out and know just why surgery is a viable option.

Hang in there is can get better....it did for me