re: Feedback on having surgery .. in reply to prev post

[Guest guest]

*My NS said that I would be " out of it " , for a month. That I would have

painful muscle spasms, and would not be able to do anything. I understand

that I won't be able to carry my son around, but what else can I expect?*

*What can I expect after surgery?

Will I be able to walk up the steps?

Will i be able to take care of my son?

Will I be sin a lot of pain?*

I myself was born with TSC and have subsequently been de-tethered 3x in 21

years, I am now 33. Did anyone suggest a second opinion? From what I

understand you are having your surgery next Friday? Where do you live? How

many de-tethering surgeries has your Nsg performed? After your surgery you

will be required to lay flat for the first 48 hours. Most likely a PT will

have you sitting up within 2 days and then walking, with the assistance of a

cane or walker or just the PT's support themselves. I would highly suggest

making other child care arrangements for the first 2 months post op - as you

are not allowed to lift anything heavier than a gallon of milk (5 lbs.)

Prior to being discharged arrangements will be made to begin PT about 4-6

weeks post-op -- depending on how you fair after the surgery your Nsg - you

will either have PT within the home or at your PT's office. If you have

stairs to walk up at home - the PT/OT at the hospital will make sure you are

able to do so prior to leaving (as long as there are not any drastic post op

complications -- and I am not saying there will be, but there is significant

risk to consider with surgery to the spine -- as is there with any surgery.)

Post-op your Nsg will order pain medication to treat you with - It's

critically important that you as a patient speak up and let your nurses/Nsg

know if the medication given is not working, they will use a pain scale to

rate your pain - 1 (minimal) - 10 (critical) -- if the medication given is

not treating your level of pain, there are other medications they can

prescribe and treat you with. Depending on how you heal post-op your

hospital stay can be anywhere from 4-7+ days. The last two de-tethering

surgeries I had I was in the hospital for about 5-6 days. The second

de-tethering I spent more time in hospital as I was extremely nauseaus the

first four days post - op and they kept me on IV fluids & electrolytes until

I could hold down food. It turned out I had a bad reaction to IV morphine --

after I was taken off this my appetite slowly returned. My 3rd detethering

caused permanent nerve damage to my right foot & leg - PT has helped w/this

-- balance & stability remain constant challenge.

You asked about pain .. I went into my third de-tethering surgery with

chronic nerve pain to my lower lumbar & sciatic region & my neck (upper

cervical area.) I was fully aware the 3rd surgery would not eliminate 100%

of my pain -- it helped some -- I began seeing a pain specialist in June

2006 and continued to see him through Jan 2009. I was without insurance for

2009 & had to stop seeing him unfortunately but now that I'm back on

insurance I see him tomorrow afternoon. Do you have much pain now? Are you

being treated for it?

When I was at Maine Med in Portland recovering from my third de-tethering,

they offered Reiki -- I cannot tell you what a positive impact this had on

my healing. If it's offered at the hospital where you will be having surgery

I highly recommend it.

Do let me know if I can be of any further assistance or support --

especially as you go through this -- I can be reached @ emaher1916@...

Has my pain gone away? No. Am I being treated for chronic pain, yes. Do I

regret having the surgery?

* *

--

Dileas, Dochas, Agus Gra,

~ With Faith, Hope & Love ~

TSC group moderator/co-owner

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