PRAYER THREAD~~~rach44

[selmaS]

Hi all Please wear ur purple tomorrow May 18th to show support  and awareness for chiari  as Rach44 goes in for her surgery.

sending good vibes~~~ and prayers to her and all in charge of her care.

[pamk5]

So glad you are home and doing better.  Please take it easy!  Keeping you in my prayers.  

Pam

[Jillr612]

Hi! My name is Jill. I'm new to the group, but not new to Chiari and all that goes with it! I just wanted to tell you that I'll be praying for you and encourage you to not make the same mistakes as I did post-op. Don't be in a hurry to be "normal" again. Allow others to help you. If they're not there when you need someone, put pride aside and call one of those friends who said, "Call me if I can do anything!" Even when you begin to feel better be careful to not over-do-it. All it will do is make your recovery last even longer. Take your pain meds by the clock, not by the pain level. When you get "behind" the pain your meds are just trying catch up rather than helping with the current pain because it is so much. Stay ahead of it and ahead of constipation! Because you're not moving around much and taking meds more your bowels will not move good. So take stool softners daily! Don't worry about getting addicted to your meds. You may become dependant but that's not the same. If you become dependant (which most people don't as long as they take their meds as prescribed) you can ween yourself off the meds slowly. I hope this helps you. It is the things that I wish someone had told me! I was so stupid. I wanted my hedges trimmed but ours at church needed it too. Since I was the one who did it, I cut 20 bushes at church with electric clippers 7 weeks after decompression surgery. Needless to say, I wasn't ever able to do mine and ended up in the ER! Sorry this ended up so long! I'll be praying for you!
Jill

[selmaS]

Glad u r home...remember to rest....praying the rest of ur recovery is non eventful : )

   "selma"

[Mannas]

It has been a crazy week and I have not had a chance to check in until now but I am so glad to hear everything went well Rachel.

[rach444]

I am back out of the hospital. I was actually in longer for complications than for the actual surgery. I developed chemical meningitis which mimics viral, which is why there was no fever, but isn't contagious. Just very, very painful. It had to run its course and I feel much better. They did an LP and my opening pressure was 19 which they said was good.  Really, most of my pain now is from the LP and my neck muscles...very little headache...thank God.  They gave me caffeine drip bags in the hospital which really helped and sent those home in combo with pain meds along with Celebrex, Valium, Percocet, and a bunch of others to help with pain.  I'm glad to be past this unexpected hurtle. They didn't see any evidence of a CSF leak and the LP came back pos for viral meng, which was actually chem meng. So, I'm hopefully over this hump. Duke has been wonderful.

Thanks for all the prayers,
Rachel

[selmaS]

  Hi, I was on dilaudid  post op and it does come in pill form....u should still be on a med schedule......

It could be a leak like Pam suggested.....or  u may have developed POTS or ICP as a result....

R u sleeping in a incline position?

Keeping u in my prayers

    "selma"

[pamk5]

Have they checked you for a CSF leak?  That can cause low pressure as well?  Please ask them.  Praying they find answers.  

Pam

[Stephiec79]

I'm glad to hear that the actual surgery went well! Your continued recovery will be in my prayers! I hope that they get these low pressure headaches under control quickly!

Sending you hugs & prayers!
Stephanie

[rach444]

Hi,

I was actually on percocet and valium for spasms as well, but trying to just use those at night.  I ended up back at Duke on Tuesday night and am still here with bad low pressure headaches. They are trying to get the pain meds at the correct dosage. Right now, it seems like caffeine iv bags and morphine are the combo that works. They gave me Delodid (sp?) in the ER which was awesome, but I doubt I'll get that in a take home package :-). Surgery recovery wise, I've had little to no issues with neck pain...just the god awful headaches which are mainly at night. At first they thought it was meningitis, but ruled that out because of no fever.  I just want to go home.  All of my pre-surgery symptoms are gone...numbness, bee-stings, extreme leg and hand weakness...so YEA! But, I've got to get these headaches under control.  They only come with change in position...Doc says my brain was so use to surviving in a high pressure environment that now it doesn't know what to do with the low pressure.  

They are wonderful here and I know they will get it sorted out.

Thanks for the love and support!
Rachel

[pamk5]

I am so glad it all went well.  The recovery is slow.  Try to go slow and rest alot.  I am also surprised that you are off all pain meds this soon.  I am still taking a very low dose of hydrocodone for neck pain usually only once a day.  It has 5 weeks for me.  Maybe call them and tell them Advil isnt cutting it.  After all you did just have brain surgery with laminoplasty.  I think it is reasonable to still have pain.  

Pam

[selmaS]

Hi Rachel so glad to hear all went well...and yes recovery is slow.,...I am surprised u r off all pain meds the RX ones...that is kinda fast.....

When do u go back for ur post op visit?

  "selma"

[rach444]

Sorry it has taken me a while to post. The surgery went well. My cerebral tonsils were fatter than expected, so he had to shave some of the vertebrae.  I was in neuro-icu for about a day and half, reg room for a night and discharged.  The recovery is slower than I thought.  It is absolute agony to go from sitting to standing position. I've tried to manage the pain with advil, but it doesn't help at night. I'm exhausted but hanging in there. I am getting the staples out on Friday. Dr. Grossi and the whole Duke staff was awesome. Thanks for all of the support.

Rachel

[pamk5]

No but I did want to hear since she went to Duke... hopefully someone will update us soon.  

[selmaS]

  Ne1 hear how Rach is doing???

[shortyw3kids]

Praying

[selmaS]

  Praying all went well and sending good vibes~~~ for an uneventful recovery.

[Mannas]

Rachel I will definitely be keeping you in my prayers and I hope all goes well.  Thank you again for all of your help.

[Mazie1209]

Prayers and healing thoughts!
Mazie:o)