What is recovery like?

[Katling]

What is your experience during recovery? I am a college student weighing my options for the coming semester. I have recently been diagnosed with Chiari with a small syrinx and it is likely that I will have to get surgery. I really want to take a reduced course load of one or two classes, but don't know how surgery will effect me. I also want to get back on my feet as soon as possible; I'm an athlete and it's really difficult not being able to work out. I've yet to see my neurosurgeon about scheduling a surgery, but I'll either have it done as soon as possible, or wait til summer. I'm at the point that I cannot complete a full load of classes and do well, hence the reduced load.

My main questions are:
How painful was the recovery? What types of medicines did you take for pain and how long did you use them for?
How long did it take before you could read or study again?
At what point were you mobile after surgery? How mobile and how did this change as you recovered?
When were you able to run/work out again?
Did your symptoms resolve? How quickly?

I know I've asked a bunch of questions, but if you have the answer for only one, I would really appreciate any advice you can give me. This is a very foreign topic and I'm trying to get as much information as I can.

[selmaS]

  Hi...do u have a recliner?...I used that instead of lying down...being flat was too much for my head and the pressure right after surgery and the incline of the chair was just right, plus u can not roll around and hurt urself....u r limited to staying a certain way...which I felt was better for me.

She should be doing neck exercises given by the PT at the hospital b4 she left this is to help avoid scar tissue from forming and her neck getting too stiff. She should walk around a few times a day increasing when possible.

Since she is just home from the hospital she will still be on pain meds, keep to the schedule...if u take them b4 the pain starts u have a better chance at managing it....if u wait till there is pain to take the meds then it will be harder....

Slowly after a couple weeks u will taper her off the meds...during the day at first and allow her to use them to get sleep and then less at night until she is off them.

   We r all different as to how long the pain and all lasts....if it gets worse, call the Dr asap....

    "selma"

[Debo44]

How can i make her comfortable??

[Debo44]

my daughter had surgery on the 6th of Jan. iam having a hard time dealing with her  pain for her..she is home after 8 days i hospital.i know that the dizzyness and throbbing is normal..how long wil this last though??

[irislita]

hi...well i can tell u my experience...i am almost 3 months post op and would be able to go back to work if my symptoms would not be so strong. i feel my body recovered a lot and my neck is really ok. so i think it depends on ur symptoms, age, the way you feel before surgery...but as i hear u r an active person u will be able to do that again. i have horrible balance and vertigo issues that keep me away from doing much, but otherwise i would be able to do quite a lot.
but anyways ur body will decide on all of that ur body will tell u when its tired, needs to rest and recover...for such an operation u should give a bit of time and have patience.

[linnielou232]

I am 16month post op and as Selma said you will hear a lot of different stories of recovery.  As for me.  I can no longer work due to I ended up having 4 surgeries and it took me down physically.  Your still young so you do have that on your side.  I was 48 when I had my surgery.  My problem was not the Chairi but my body would not except the stitches so I kept getting CSF leaks.  It is all different for every body.  I don't want to scare you, but just want you to know the reality of this surgery.  Some people have it and are back to work in 3 months.  Not so for all of us.  I am still in the healing process.  It has taken longer than I antisipated.  That is why Selma always' say's to take it easy after surgery because it can affect on how you heal.  Get a 2nd oppion.  I actually had 3 different Dr. before I found one I was comfortable with.  I am glad that I had the surgery.  I do feel better every day, but I never expected the journey I had to take to get where I'm at today.  We never know how this will affect us.  You also have to realize that having surgery isn't a cure, but slow's down the progression.  Once a chiarian alway's a chiarian.  I thought.  Have surgery, get back to work.  It didn't work that way for me.  Just prepare yourself for everything then you won't be disappointed in the outcome.  We are here for yu for support and know your not alone.  Wish you the best.

[selmaS]

  Hi and welcome to the Chiari forum.

First, b4 u decide to have surgery, make sure u see a few Drs and the one u choose to do surgery is a true chiari specialist and that u r tested for related conditions as it can affect recovery.

U want to know do u have a CSF obstruction, overcrowding, sleep apnea, ICP, PTC...ehlers-danlos, a syrinx, tethered cord....

Testing should include MRI's of the brain w/wo contrast, of the cervical spine, thoracic and lumbar....

A clinical eval to rule out ehlers-danlos....


  We r all different and depending on if u r checked b4 surgery for the above mentioned conditions can help how ur recovery goes....

U will want to know if u plan a surgery what type ur Dr feels u need, what will be done, will u have a duraplasty, and if so, what type of patch.....

Educate urself as to what all is being done, how often ur dr has done this and how well past patients have done...but u can not compare urself to neone else...we r really all going to give u a different story.

Many of us r posting our surgery experience in our journals...click on our name to get  to our profile page to access the journals.....

I had surgery in May '09...I still do not work or drive...BUT I do have other issues going on...I am glad I had my surgery and found it helped me.....

Not knowing what ur symptoms r, or really how this is affecting ur overall health except u said u can not do a full load at school...I have no idea how long u have been affected and how badly u r affected, and y  ur Dr feels u r a surgical candidate...this will play into how well u do post op as well as ur own out look and how u deal with pain.

As for pain meds, we all may have been on different meds...those with EDS tend to have issues with meds and sometimes this is an issue post op....so again that will affect how u heal.

Over all it can take up to 2 yrs to heal completely ....and it is suggested u take recovery slowly and not rush...those that rush can cause set backs....



"selma"