Chiari Online Support Group

Strength and support


#1

I was diagnosed 3yrs ago and have basically been dealing with this all on my own. Any meds given to me caused horrid side effects and kidney issues, and i havent been back since. I know im overdue, and yes things are progressing again. Im starting to have heart palpitations, and wake up choking at night. My “normal” symptoms are getting harder to control. I know surgery is inevitable…but how?? Im on my own…totally. Its hard enough getting through this, how am i supposed to function and recover from a hole in the back of my skul?? Has anybody done the thing alone?? Im not putting this burden on my kids. Ive spent my whole life making sure they live their best life, and not to worry about me…i got this, no matter what gets thrown at me.
Basically im just wondering how awful doing it alone will be so i can start preparing myself. Im going back for another scan soon and i know what they are going to find and say. Im expecting surgery by next winter if i can hold off that long. But if its messing with my heart, im guna have to just do it.


#2

Hey Angie,
You sound like a very strong lady BUT, my advice, do not be trying to do this all on your own. Neurosurgery recovery can be heavy, REAL HEAVY. I would be recommending you speak to your medical team to see what services maybe available. I am unsure of just what sorts of services there may be in Iowa. The hospital may have outreach services. There maybe community services you can call on. Some church groups also have support programs.

I understand you do not want to burden your children and as commendable as that is often family can be the best support we can ever have. Although you may doubt the care you may need, even having family there for the ‘emergency need’ I would strongly recommend. I had the typical male attitude ie ‘I man, I strong’ I can deal with anything. Then they operated… ….OHH HELL!! I thought I knew pain, I thought I could handle anything. I went from ‘I man, I strong’ to ‘I mouse, squeak’ This wasn’t pain, this was mind numbing, nauseating agony.
Do not, DO NOT!!! be trying to do it all on your own. PLEASE.

Look you may come through it all and think “What was all the fuss about?” and I hope, pray and beg that this is the case. But if this is not the case, it’s much better to have those supports in place prior to any surgery. Trying to organise such support when you are in pain can be extremely difficult.

I am not sure of your personal situation nor your need requirements but here is a link that maybe of assistance and even if it is not, they may know who within you locale may be able to assist https://iowacompass.org/
I would recommend making contact with such services prior so that any support plan can be discussed and implemented before any surgery takes place. Some services may have specific needs/criteria that need to be met to access their services. Make sure you qualify prior.
I CANNOT EXPRESS THIS ENOUGH!!!
DO NOT BE TRYING TO DO THIS ON YOUR OWN
JUST DON’T!!!

Merl from the Moderator Support Team


#3

Hi angie2
Why exactly are you so inclined to make this an only you issue? Don’t undermine the love and understanding your loved ones have for you, you have been there for them, they will be more than willing to be there for you.
I had someone with me at the hospital, and it was comforting in a strange place, different noises and feeling quite vulnerable. At home, my daughters had to go back to school and husband had to work, but I needed the quietness and thankfully recovered quickly, within a week I was off meds, but that’s only because I physically cannot handle even ibuprofen. I hope you at least communicate how you are feeling, to those around you and make it a family decision, too much for only you to worry about.