Chiari Online Support Group

Depression takes over


#1

Hi all,

I am a 2014 decompression surgery person who has been told I now have permanent nerve damage. Like im sure most of you here…the symptoms of headaches, blurry vision, numbness in arms legs, fatigue, anxiety, and on and on affect you all too.

How do you all deal with it? I manage to work a full time job, but it is brutal and im exhausted at the end of the week. And like, no disrespect to my healthy friends who say…i hear ya, im tired too. But like, if they only knew what my day was like!

This condition is a freaking beast with numerous symptoms and side effects and sometimes…you wanna say, really? You think thats an issue? Try dealing with what i have to face each hour!! But i know thats not a good way to think about it all.

But still. UGH. im just hoping someone reads this and can give some encouraging words :slight_smile:

I hate being angry about it, but this condition has beaten me down big time


#2

Hi, I hate to hear with what you are dealin with. It seems that there are more negative stories when it comes to decompression surgeries, than there are positive, and successful one’s. Well, of course I have CM1. But, I am not a candidate for surgery, and will never be. I have an array of health issues, all steaming from a rare bone disease, hypophosphatasia. Not sure if it would help, but I could go down the list and tell you about them if it would make you feel better. Like hydrocephalus, craniosynostosis, along with my bones deteriorating, with no cure. So of course I’m on disability But I’m sure you know that there are people worse off than you. I can totally empathize with you. I barely ever have energy. In constant pain everyday, all the time. Not sure if you ever thought about disability, but it sounds like you might pass to qualify. Just have to have doc’s that will agree and sign off on the paperwork. I know it’s rough, and pain sucks. But you can still drive, which is something I wish I could still do. But I have seizures. And you still work and are pushin yourself to accomplish a regular everyday life. You haven’t let it totally take over you. I give you lots of credit for that, and compliment you for stayin strong.


#3

This Website is so wonderful because you will find others that feel your frustrations and pain; emotional and physical.

Having an excellent primary-care physician such as a doctor of internal medicine is a good starting place. They listen and try to decipher how best they can help you and are more apt to follow up with your progress.

I have recently been prescribed the generic of Cymbalta and it is called Duloxetine. It originated as an anti-depressant medication and was found to help in nerve pain management. I was not able to feel the definition of my feet or hips and was having extreme pain. This medicine helped tremendously. It is not for everyone, but also consider there are others.

Do not over exert your system. Remember massage and chiropractic care can be beneficial and once again these may not be for everyone. I did chiropractic prior to finding out I had Chiari Malformation 1 (have used chiropractic care for 20 years) and my doctor was the one that explained Chiari to me not my general physician; whom I no longer use.

Even though decompression surgery relieves pressure at the base of the brain the area is still sensitive. We were born with this and surgery does not change that so respect the cerebellar part of the brain by not overdoing physically, consuming stimulants like caffeine, or frustrating yourself into emotional exhaustion.

Manage your Chiari as best you can and know that it entails paving a path in life that includes building a support group and educating others in what Chiari is; because that just may help another lonely soul that is trying to find out what is wrong with their health and help them to gain resolve.

You can step outside your box and come up with some small solutions like cool packing the base of the skull. I know you can do this, please understand you are capable of bettering you situation. Go Girl!!!


#4

There are different levels of the Chiari as you know. Honestly, I am not sure how you can work full time. I am guessing you are younger and it was diagnosed at a younger age.
Some advice I can give you, is, you don’t have to give your medical “resume” as I call it to everyone you meet. My issue was, I used to tell everyone about my brain surgery and my Chiari along with my Syringomyelia (my resume). I did this apologetically, as to appease incoming behavior from an odd look on my face (unually unenthusiastic), failing to meet an appt., luncheon, etc. People tend to be apathetic naturally, it doesn’t change when you give them your health history. It doesn’t help you bond with them and any easier and often makes your physical condition become your personal identity.
I’m not saying don’t talk about it at all, I’m just saying if the time is ultimately appropriate.
The other thing is accept it. Accepting your condition means accepting you are physically different than other people. This is where I think the much depression comes into play. Not too mention, at least for me, a subpar quality of life. This might sound harsh, but it is not logical to think you can live up to the expectations (physically & mentally) as others. This is the part of “owning” it I am referring to. So then, you start to detach and it starts to become more normal rather than feeling polarizing. (again, doesn’t mean you can’t go out and live) It just means your life will be altered in many ways and you know you have to accommodate that now. Acceptance will help in many ways.


#5

Hey There sssnov76, My Name is Dennis, I am a 1976 hydrocephalus shunt patient, It was known I had Chiari at the time the Shunt was installed. My doctor did not want to do the decompression surgery unless there was no option. It tuned out that the option of the shunt worked well for a few years until it was getting difficult to hide my returned difficulty coping with balance, gait, double vision, headaches etc… My Father and Brother pulled me into the kitchen one day and told me that basically they knew I was hiding that things were getting miserable again. So I am also a 1980 Decompression patient. So anyway from there I was off to the surgeon for the decompression surgery. If I didn’t have the surgery I was told I was heading for life in a wheelchair. I was told before the Surgery that I would require months of Physical Therapy to learn how to walk right again. I was an extreme case. Against Doctors orders I was released to do the therapy in my home town after my parents promised Him that I would not be left alone until the therapy was proved to be working. Fast forward a few years, after Therapy, Schooling paid by the government because of my surgeries and the severity, I ended up graduating and ultimately decided to work in a factory, a clean room laboratory type position so it worked well. Ended up working my way to supervision and a few years ago Project manager… But now I will be totally honest, I am Exhausted, I am fatigued, I am anxious all the time. i have severe headaches, sometimes Vertigo, my new family Doctor calls it that anyway. The room spins so bad when he is examining my abdomen where the shunt tube travels. I have to sit on the table for 10 to 15 minutes before I can walk without staggering.
So, Yeah, I get it, but I will say you can be strong and fight through it or let it take control. Believe me you don’t have to like it, I know I don’t!!

I was told by my father that I better hope no one ever finds out or I will never have a normal life. I don’t know if that was for my sake or his actually. But I buried it and no one ever found out anything til my Pastor approached me one day and said "I have watched you and I can see that you struggle connecting, you are friendly and happy but out side of a hand shake you won’t let anyone in. So with his help, I am dropping the secret. It is not easy, I have only been able to tell the truth to a handful at Church.

And I get it too when people talk about certain things that they deal with daily. I don’t want to diminish anything, but they have no idea how hard life can be. Even my own family, they think that the surgery was a magic wand and I am all better. Did I mention I am exhausted. But i think that a lot of people are starting to see that without being told anything now.
After secretly living my life as though I was perfect as any other guy, I am paying for many accidents, falling and such. After the last fall a few years ago it was discovered that the shunt is destroyed from the fall. So now I have lost the back up of the shunt to help with the drainage. So finally ended up with a recommended wait and see because shunt repair/replacement is risky. So therapy again for several months, which helped while it was being done, but it is falling off since it is over.

So now I am diagnosed with possible Narcolepsy, I think it is just that I am permanently and completely exhausted. But if the meds for that condition will help I am all for it.
So absolutely, I get it. If you are experiencing the things I have lived with in secret for 40+ years. I totally see how you are exhausted and fatigued. But don’t be stupid like me and deny anything is wrong in such a way that you ignore your limits. They are nothing to be ashamed of and abiding by them can save you a lot of added exhaustion. Live your life the best you can, accept that you are always going to have these difficulties, everyone is always going to think that their issues are the worst. And you are always going to feel like yours are, but there are people who have it worse than us.
Believe me when I say, I know exactly what you are saying, but don’t get so prideful or bitter that you push people away. That is what I did and ended up making a great life for myself…completely on my own.

Sorry this got so long, I guess it is kind of proof that I am just learning how to talk about it all.
I actually feel like my story is one of the positive stories. Proof that you can do whatever you want and put up with whatever you have to in order to make the life you want. But I am 56 now and I am exhausted.