Chiari Online Support Group

Surgery worries


I am 35 years old and have surgery scheduled for the end of June. I am really nervous. I have three young children i care for full time. I was diagnosed with Arnold chari , keppel Fels syndrom, scoliosis and arthritis… I am stopping there three years ago. 11 mm.
Today I’m at 14mm and have headaches constantly. I have dizzy spells, heart palpitations, left arm either in excruciating pain or numb, neck stiffness with unrelenting pressure and pain. I have decompression surgery scheduled for the end of June and I’m nervous due to it being surgery on my skull but I’m also hoping for the best because I don’t want to live like this anymore. I am mean and grouchy and not a nice person to be around and it’s because I’m hurting. I’m on pain medication that barely takes the edge off and have been to the hospital and then given shots that barely work. I really hope the surgery relieve some symptoms I’m having. Also I was told I have no CSF around the top of my spine. It’s blocked so I’m hoping the decompression will allow my spinal fluid to return. I have many questions for my Dr which I have an appointment with tomorrow. I can only hope for the best.

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Hey ChariMom
“I am really nervous.” I can’t think why (That is a joke by the way) I become an absolute ball of stress everytime they operate. My view is “…Well that’s my skull, my brain they are operating on. That thing that makes me ‘me’. Will I still be ‘me’ when I come out of it…” I’ve had the misfortune to require a few neurosurgeries and still I stress out to the extreme. I do not know how my poor wife puts up with me at times. A bit like me, you have a few contributing conditions so to be saying that surgery is going to be giving you complete relief is nigh on impossible. The medicos can only treat you for what they can identify and relieve, but if you are anything like me they will not be giving a 100% guarantee. All you can hope for is a relief of your symptoms.
I wish you the very best of luck with your surgery and although this may sound flippant, it most certainly is not, there is very little to nothing you can do about it all from here. From here it is all up to the medicos, so stressing about it all is about as much use as screaming at the moon. I’m not going to say don’t stress because I know that is impossible, but the less stress the better for all concerned.

Merl from The Moderator Support Team

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I feel for you. I had surgery 5 years ago with two small children. Please be sure to put a lot of support into place for your recovery period. It has the potential to be long. I had family stay in for the first three weeks. After that, if possible, cleaning and meals and laundry assistance would be a good help for as long as you need it. No point in fatiguing yourself on those jobs and have nothing left for a smile for your kids and husband.

You will be having a major surgery. Tell people this before and after surgery. They will not always know just by looking at you. The recovery from the anaesthetic is difficult. Freezer meals, someone to mow the lawn to help your husband is good to. Goodness, many things. Ask Ask Ask. Husband and family can ask others for you too. People can need prodding to help and reminders especially if you have been unwell for a long time. Everyone’s network is different
The best of luck in preparing and in your recovery.

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Hi ChariMom,

I do not know what it’s like to have kids, I only have my two furbabies (basset hound and great pyrenees) that I consider to be my kiddos lol :)… trying to make you smile. I hope that your surgery goes well and it helps you a lot, and helps alleviate/or get rid of the symptoms you are experiencing. I’m going into my 8 month of symptoms and they progressively worsen each month, if not each week now, and I’m becoming more irritable, angry, upset, as the months progress, which normally I am not this way… so I know what that feels like. I"m like that because as you have said you’re hurting, so am I. Pain medicines are useless I’m either really allergic, or as you say, they don’t take the edge off. I use epsom baths, which help me relax my body (slightly take the edge off), but long term use of those in a bath causes UTI’s (ha-ha). Not fun. All of the symptoms you have, I have, many of us likely have you aren’t alone, we’re all here to support you. If you ever need anyone to talk to, I’m always here, we’re all here for you :).

I’ll keep you in my prayers and prayers that your surgery goes well, and prayers that you’ll have an awesome support network for when you’re in recovery :slight_smile:

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Celeste, how did your surgery go? How are you doing?