Ok, PFD coming up- what to expect??

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Ok, PFD coming up- what to expect??

Postby toport20 » Tue Mar 20, 2012 2:50 pm

Hi all,

Hope everyone is doing the best they can do despite this stupid disease! Well, I had been diagnosed with Chiari & syringomyelia, at the time things weren't too bad but having alot of pain. I had tethered cord surgery but things continued to worsen.

So I have been in contact with my NS who agrees a PFD is in order. I'm full of questions, one is how is the surgery usually, like how long are you in the hospital, what to expect physically etc.

Also, has anyone been able to receive any reimbursement from their insurance companies for travel, hotel stays, taxies ? I have both medicare and aetna. Whoa how I dread all this!! Thanks all!!

Tracy
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
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Location: Ohio

Re: Ok, PFD coming up- what to expect??

Postby gunflint » Thu Mar 22, 2012 6:20 am

Remember that we all have different pains and recoveries. This is how it went for me. The surgery isn't too bad but then again you're asleep for it. From the time you come out of it and for the next 3 days the pain is pretty intense. I finally reached a "10" on the pain scale. It gets better slowly over the next couple of months. The flight home was a very miserable experience for me. Not so much for the surgery but I believe it was from my positioning during surgery. I was in the hospital for 10 days.

I'm in the NIH study so my travel was covered so I can't answer that question. Dreading the surgery is completely normal. Just think about how your life and your future would be without it. Good luck.
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Re: Ok, PFD coming up- what to expect??

Postby toport20 » Thu Mar 22, 2012 4:09 pm

Thanks gunflint,

Yes I am dreading surgery, but not as much as what could happen! Things seem to be getting worse with me fast.

Wow, I didn't realize you could be in the hospital for 10 days? Like I said all of us are different. Anyone else want to chime in on their experience? I will be going to North Shore.

Thanks! : < )
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Re: Ok, PFD coming up- what to expect??

Postby toport20 » Tue Mar 27, 2012 3:52 pm

bump
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Re: Ok, PFD coming up- what to expect??

Postby jjames » Sat Apr 14, 2012 3:08 pm

Hello -
I had a PFD in 1999 and a PFR in 2007. Recovery time really depends on you, your pain levels, your own personal needs/demands, etc. I was in the hospital for about 5 days with each (ICU the first night). The flight home was not as excruciating for me as for others. Just remember to listen to your body and take it easy. The nausea was bad for me....
I did not find any way to get help with the flights, hotels, car, meals, etc. It was all out of pocket. Very expensive, but worth it in the end.
Best of luck!
~Everything is always ok in the end. If it's not, then it isn't the end.~

JJames
ACM/SM
1998 Decompression; 2007 PFR @ TCI
Syrinx C1-T10
Mild Scoliosis
Mom to two wonderful sons!
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Location: Nebraska

Re: Ok, PFD coming up- what to expect??

Postby kiminfla » Mon Apr 16, 2012 4:48 pm

I woke up on a lumbar drain so had to lie flat for several days, being turned every 2 hours. When I finally got up, I had a CSF leak and had to have a blood patch and lie down and start over. Because of this, I was in the hospital for 10 days also. I don't think it "typically" takes that long. Lumbar drains and csf leaks are not "the norm". My pain was very well managed.

I try to look at it this way...It's not a walk in the park, it's a walk on the path of wellness... although there are bumps and curves on the way, if we're moving forward we're making progress!!!

To give you some encouragement, I am a full time middle school teacher and med-free. Not because I'm a martyr but I really am not in a significant amount of pain anymore on a daily basis. I continue to have neck and arm pain but the majority of my symptoms have improved. It took a long time to get where I am but thankfully, I feel like I'm still moving forward.

Also, remember that many who are active on the boards are still looking for answers, newly diagnosed, or still struggling after intervention.
The majority of the "success stories" aren't as active as those who struggle so try to keep that in mind and think positive.

We're here for you! Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Re: Ok, PFD coming up- what to expect??

Postby reedy » Mon Apr 16, 2012 11:17 pm

kiminfla wrote:...It's not a walk in the park, it's a walk on the path of wellness... although there are bumps and curves on the way, if we're moving forward we're making progress!!!


very nice, Kim!
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Re: Ok, PFD coming up- what to expect??

Postby toport20 » Wed Apr 25, 2012 11:02 am

Thanks guys!

Kim, sounds like you are doing well, especially with all the circumstances we have to go through. As far as people being on here, there used to be alot of regulars, who I talked with back in 09, we just had alot in common and would like to hear from them. I know I go thru my periods where I don't login here much too. I guess that could be a good sign I hope!

Have a wonderful day, Tracy
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio


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