Well now I wait again!

[pamk5]

I had the CTA today and will get results on Monday along with recommendations for treatment or surgery.  I am so so scared of this surgery.  I am more afraid of trying to live like this with the limitations it has placed on me and my life.  How often do complications happen with decompression surgery? How often is it a success? I know the success varies based on how long the compression/nerve damage was a factor.  I see the NS on Monday after I have swallowing studies.  I am thinking not many more tests I can have done....so it is time for answers.  

I am a single parent, self employed with alot of responsibilities not sure how I will pull off months and months of recuperation.  How long did it take most of you to go back to at least part time work?  To be able to drive? To walk to the kitchen and fix your own drink/food? I am a little concerned how much help I am gonna need.  The only girl in a sea of guys who are never quite as nurturing as a woman.  I am sure my friends will help out some but they have their lives, responsibilities to take care of too.  Sorry I am just freaking out a little.  

[pamk5]

thanks for your input! He is listed on alot of sites for chiari, not our list.  I am not sure how to find out how many surgeries he has done, etc? Any ideas?

[n40066]

pam...i was quite the opposite of selma....i had no problems or delays after surgery and healed very quickly.  as a matter of fact, my mother was yelling at me because i was trying to cook 8 days after my surgery!  no granted, that was me on meds....lol!  but you get the point.  all of us really are different.  there are more of us that have successful stories than have nightmares from the surgery.  stay positive and like selma says...make sure your dr. is a specialist!!!!  you can NOT have a second chance at this surgery.  if the first guy messes it up, the odds go down drastically of the second dr being able to completely fix you up without some residual issues!  keep us posted and best of luck to you!!!
elizabeth

[selmaS]

well that sounds like it could work...as long as u r not lifting and bending too much and not too much stress.Sounds like a good job for a chiarian.

No sorry I haven't, but there is no way I would of heard of them all.....just as long as u do ur research and like the dr and his credentials....it has to be someone u r comfortable with.

Keep in mind, it can be the #1 hospital in the country,but they still may not have a chiari specialist there....same goes with the dr being a top NS....that is fine, but u still want a chiari specialist.

Ok I am off my rant, I pray this dr is well educated and experienced since u like him so much...good luck with ur appointment.

"selma"

[pamk5]

Well I am an insurance broker so driving is a big part of what I do.  I guess if I have my wits about me I can have them come to my office.  Have you heard of Stephen Tatter at Baptist he is on some of the Chiari lists and I have been impressed with his knowledge/bedside manner. That is who I am seeing now and Wake Forest Baptist is one of the top 50 hospitals in the country.  So we will see how it all pans out on Monday.  

Thanks

[selmaS]

Hi.....I understand ur concerns and fears...we all go thru this...and if u didn't I would be scared for u....lol...

It is not easy to know who will have an issue following surgery...we have had  members develop epilepsy.....seizures......pseudomeningocele.......leaks..... meningitis......IIH/PTC......and reactions to the patch.

It is bcuz of the risks and complications that the NS b a chiari specialist .....this way they know what to do for u, and may recognize it sooner than one that does not do these surgeries often.

As for how long until u can get back to work.....I am 17 months post op today....and still can not drive nor do I work....I do have other issues going on and knew of them b4 I had surgery.....I am a very slow healer,.....if u heal quickly that is an indication....however, u can not go just on how ur scar and outward healing is going....or even how u feel...take it as slow as u can and allow urself to heal.

Also it will depend on the type job u have.....

As for food, many have cooked up a storm and froze dinners for afterward to make things easier....that way u r only shoving a dish in the oven......

And the kids will sense that u can not do things like normal and b more of a help....u never know...depends on the age too.
No lifting them if they r small...have them crawl onto ur lap while u r sitting and that goes for months afterward......lifting and bending is a nono after this surgery.

AS for care afterward...my DD was with me for the first week or so and then he had to go to work, so he would make up a cooler with my breakfast and lunch in it and place next to my recliner in the living room....this was all while I had to use a walker.

Once I was able to walk with my cane....he was leaving things in the fridge.....

Men can be very compassionate when they see what u r going thru, trust me...my DH was and still is my rock.

Try to relax a little bit : )

"selma"