Surgery May 3rd -ugggghhh!

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Surgery May 3rd -ugggghhh!

Postby toport20 » Wed Apr 04, 2012 10:26 am

Hi guys,

Well I scheduled my surgery on May 3rd for chiari and syringomyelia. Wondered if there is ANY advice or comments anyone can give? Anyone else going to TCI or variety house that week?

Oh gosh I am a nervous and exhausted. Still have to fit in about 4 doctors appointments this month!!


Thanks everyone~~ :shock:
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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Re: Surgery May 3rd -ugggghhh!

Postby pmaxwell » Wed Apr 04, 2012 11:17 am

what surgery are they doing:? Wishing to tons of good luck and success
Together We Can...
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Re: Surgery May 3rd -ugggghhh!

Postby toport20 » Wed Apr 04, 2012 3:45 pm

I'm getting a posterior fossa decomression. Can't wait. LOL
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: Surgery May 3rd -ugggghhh!

Postby pmaxwell » Wed Apr 04, 2012 3:56 pm

This is easy for me to say because I've never had the surgery but I think most are pleased with the results. It is not a walk in the park and recovery can really drag but if it relieves the symptoms and stops the progression isn't it worth it? Lots of people on the board have had that surgery so hopefully you will get some good advice. Unfortunately most who have successful surgery don't really need a support group. But there are lots of people out there who have found relief and I pray you will be one of them. I just wish everyone could be successful.
Together We Can...
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Re: Surgery May 3rd -ugggghhh!

Postby Andrea » Wed Apr 04, 2012 9:54 pm

Good luck! I found it to be a very difficult recovery but since this disease is so different for everyone I would imagine that the recovery is different too. Take the drugs and dont be a marter have lots of family help as well. That was so valuable! Will be sending good thoughts your way
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Re: Surgery May 3rd -ugggghhh!

Postby RIrider » Thu Apr 05, 2012 8:39 am

Prior to my Chiari surgury I was saying ugggghhh! The care at the hospitals is tremendous as the nurses know just what you require. Thank God for those who go into the nursing profession, they are wonderful people! After your hospital stay it is a slow but steady reawakening to get back to your old self. Pain meds help but it is good to wean yourself from them as soon as you can. You really should stay out of commission for up to two weeks to heal properly. After that I began taking walks and getting outside and doing things like gardening. It felt good! Consider it a vacation from the daily grind and God's way of having you take a new look at life. Good luck! :)
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Re: Surgery May 3rd -ugggghhh!

Postby gunflint » Thu Apr 05, 2012 8:44 am

I had mine done in October. Yes, recovery is slow and painful. The surgery has done nothing for me as of yet. The syrinx didn't shrink and CSF flow rate as remained unchanged. It was worth a shot since I am a study participant so I had a top surgeon and very minimal cost. Two things come to mind as far as advice goes. First and foremost make sure that you have your discharge pain meds all lined up before you get the surgery done. I can't really explain the experience of having to call in a request for powerful pain meds to your GP from an airport and having to stand in line at a pharmacy 10 days post surgery after spending the day in pain traveling on airplanes. The second thing is to pay attention to other pains than the ones cause by surgery. My side hurt worse than my neck from surgical positioning. It got to the point where I had to sleep sitting up and was having a difficult time breathing. Good luck.
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Re: Surgery May 3rd -ugggghhh!

Postby toport20 » Thu Apr 05, 2012 3:42 pm

RIrider wrote: You really should stay out of commission for up to two weeks to heal properly. After that I began taking walks and getting outside and doing things like gardening. It felt good! Consider it a vacation from the daily grind and God's way of having you take a new look at life. Good luck! :)


Thanks Rrider! Just a question, how long did everyone stay in the hospital, and are flights ok a few days after the surgery?

I'm racking my brain, "that's falling out anyway" LOL but trying to figure out plane tickets, it's just much cheaper with a round-trip than one-way twice!!

gunflint wrote:The surgery has done nothing for me as of yet. The syrinx didn't shrink and CSF flow rate as remained unchanged. It was worth a shot since I am a study participant so I had a top surgeon and very minimal cost. Two things come to mind as far as advice goes. First and foremost make sure that you have your discharge pain meds all lined up before you get the surgery done. I can't really explain the experience of having to call in a request for powerful pain meds to your GP from an airport and having to stand in line at a pharmacy 10 days post surgery after spending the day in pain traveling on airplanes. The second thing is to pay attention to other pains than the ones cause by surgery. My side hurt worse than my neck from surgical positioning. It got to the point where I had to sleep sitting up and was having a difficult time breathing. Good luck.


Gunflint, I'm so sorry to hear your syrinx did not shrink. This disease makes no sense to me. I was dx'ed in 2007 and it wasn't bad at all. For some reason things have deteriated fast on me and went from 3mm in width to 10 and also grew vertically. I also went through troble with my meds the last time I was in the hospital, so I've got about 5 doc appointments to make sure I'm set.

Hey pmaxwell- I know I have talked with you before, are you from around OH? Just wondering.

Everyone feel free to chime in, I'm trying to make sure I cover all bases. I also was interested in how many days did you recover before flying home (if you did that) Has anyone stayed at the variety house, and if so, what is it like? Just etc. etc. Thanks for everyone's comments!! :mrgreen:
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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toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Re: Surgery May 3rd -ugggghhh!

Postby gunflint » Fri Apr 06, 2012 6:22 am

I was in for 10 days before flying home.
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Re: Surgery May 3rd -ugggghhh!

Postby reedy » Sat Apr 07, 2012 8:02 am

Try to get a ticket that allows changes, as flying before you are really ready is probably a bad idea. Make sure you have someone travelling with you as you won't want to carry or pick up ANYTHING. The doctor can tell you when you are ready to fly (and only the doctor, really). We are all different in this, so its hard to say.

BTW, when I was returning from Washington to the UK last year after surgery I booked the seats in the front next to the exit door which gave me a way to stretch out my legs. It cost $50 more but was completely worth it. For those of you travelling internationally, I recommend Virgin Atlantic as they have a much better ticket change policy than many of the others.
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Re: Surgery May 3rd -ugggghhh!

Postby toport20 » Tue Apr 10, 2012 11:08 am

Well folks, things are coming together, slowly but surely. Got my tickets- bought insurance on them so if I need to change dates the fines will be refundable "at least". Think I'll be getting into the variety house (I hope). Has anyone been there? Just wondered if I could ask & see. Seems like there aren't as many people on here as there used to be? Maybe everyone is on facebook now....LOL

Well, gotta have a stress test tomorrow, get bloodwork and chest x-rays done and make sure I have all my meds refiled! What a pain I went through last time with them... I feel pretty lucky, both my boyfriend and sister are going, so they can help each other out with my butt. :shock:
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: Surgery May 3rd -ugggghhh!

Postby karenb » Tue Apr 10, 2012 12:50 pm

It sounds like you're really getting everything together. I hope things go really well for you.

I agree - it does seem like there are fewer people on than there used to be - I have no earthly idea about facebook (since I don't use it...).

Again, best wishes, and do keep us posted!

Karen
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Re: Surgery May 3rd -ugggghhh!

Postby RIrider » Thu Apr 12, 2012 7:46 pm

Just a little story of my ordeal...my brother drove me up to Boston the day of my schueduled surgury, leaving about 4:30AM. After signing in the nurse had the doctor on the phone and he told me he had an emergency surgury and had to postpone mine till the following week. I was surprised but not at all upset as I knew he did cancer surgeries. Anyway, now my brother and I walked out of the hospital at 6:30AM and decided what the heck...let's just walk around Boston for the day. We went through all the historic districts and watched the city awakening to another busy work day. What a great perspective to experience! Shops opening, deliveries, paper boys, bike riders, the smell of coffee in the air, being greeted on the side streets like we were neighbors. Making our way to Fanuil Hall for breakfast then strolling the rolling hills of historic homes. It ended up being a special day we would not soon forget. The only hard part was going back to work for another week after I already said all my goodbyes. :P
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Re: Surgery May 3rd -ugggghhh!

Postby tennesseewalker » Fri Apr 13, 2012 2:53 pm

I have to say I admire those who can fly to and from their surgery location. My PFD was done locally (Orlando FL), and the 30 minute drive home with a stop at the pharmacy was as much as I could do.

You'll need a notebook to write your meds in, when and how much to take, and the time you took them. They'll likely be numerous and on different schedules.

Also, if you're female, the surgery may bring on your period, early or late. Hospitals use those archaic belts and pads, so you might want to come prepared, just in case.

Good luck with everything!
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Surgery May 3rd -ugggghhh!

Postby kiminfla » Sat Apr 14, 2012 8:13 am

My pfd was more than 5 years ago but I am defnintely better than pre-op! It can literally take years to see the maximum benefit from the surgery so try to be patient with your progress. Some see improvement immediately but for some it can come with time. Prayers that your surgery will be a HUGE step forward on your path of wellness. 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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