Recovery time after surgery & info

[Booloo15]

Hi, I am 15 years old and have recently been diagnosed with chiari malformation number 1. I am quite fit and physically healthy (eat well, swim at least once a week)
so I am going to have the surgery in the summer holidays this year and was wondering what the average recovery time was (preferably for someone like me or your own personal experiances)
also when are you allowed to do sports again, how long you stay in hospital and if you are allowed to fly afterwards.

Also I was wondering if this whole process will take mote than 6 weeks (summer holidays) and if I would have to have time off school. :)
any personal experiances qould also help :)

Thanks.  

[Booloo15]

No, I don't realy know much about it, my doctor told my dad most of it but all I know is my symptoms and that the tube thingy in my spine that let's the fluid down (sorry don't know technical term) is smaller than it should be.
Will know more about it after 9th of June :)

Oh and good luck with surgery tomorrow aJunebug! It is tomorrow right?

Thanks again everyone :)

[selmaS]

  Well we do have a list for the UK Drs too...The Ann Conroy Trust......so if u should need another opinion, u may want to look to this list to find names of Drs to research.

  http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

Do u know if u have a CSF obstruction?.....or a syrinx?

   "selma"

[ajunebug]

Oh, and I fully expect to be laid up longer than what my doctor told me. I was surprised that he said that I'd be back to being active so fast...but he does know what he's talking about, I'm sure....I'm planning to be inactive for a long while and will be pleasantly surprised if that's not necessary!

[ajunebug]

^^ Even though I am getting it done endoscopically, they are still doing the same surgery as you...removing C1 (and maybe C2), a craniectomy, a dura patch, and possibly burning off of the cerebellar tonsils. I might not be climbing mountains, the trails near me are a combo of flat and hilly...it is Ohio after all! lol. Not Colorado! :)

meatsafe - I am doing it at the Cleveland Clinic. To my knowledge, they are the only ones doing it endoscopically at this time. At least until Dr. Di sets up shop in Missouri. He used to be in Cleveland, but he's moving.

[zygy2]

My feeling would be that endoscopic would be very different perhaps???  I had a regular decompression with removal of the back of C1 and opened and patched dura and at three weeks there is no way that I would have been hiking or swimming.  I could not even turn my head enough to drive at three weeks.  Maybe endoscopic is different.  I was out of the hospital in only 48 hours so I did very well and it still took me quite a while to be active.  I could walk around and could have been in a pool but no swimming laps or climbing any mountains that fast.  I would say by 5 weeks I was starting to be more normal with things getting increasingly better by 3 months. I did PT at this point just to get full range of motion in my neck again because it still seemed a bit limited.  

[Booloo15]

My symptoms are:
mainly I have numbness in the eight side of my body and a realy bad pain in different areas (started off in my ribcage then spread to hip an now on leg.) I have numbness in my right side of torso and leg but only to knee and same with arm but to elbow.
I have trouble with balance and concentration
and also minor headaches.

My doctor thinks I need surgery because the numbness and pain is spreading. I am going to see and talk to a surgen on the 9th of June.

... And oh yeah I live in the UK
thank you :)

[Booloo15]

I am having it at great ormand street hospital in the UK sorry :(
but wow I didn't know i was talking to people like me all around the world :)
thanks :D

[meatsafe]

Dear junebug,
I'm just curious: where in the country are you getting the endoscopic surgery? I've heard it's available at the Cleveland Clinic - fortunate, since I have a relative in Ohio - but I am curious whether anyone in my area (Boston) offers the technique. Is a list available?

[ajunebug]

Timely question! I am having surgery this Friday and asked some very similar questions of my neurosurgeon today. I too swim regularly, hike a lot, I'm active and healthy. Now, I may be different than a lot of people here because my surgeon is one of the only surgeons who does chiari decompression in a minimally invasive (endoscopically). So the recovery time is less.

My surgeon said the first week or two will be rough, but he would expect me to be able to hike after 2 weeks, and start swimming again at 3-4 weeks, barring any infections or complications. I will be taking it easy and will not be doing any heavy lifting for 8 weeks, per his instructions. My surgeon says I will be fully recovered in 6-12 months.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask what symptoms u present with currently...do u have a CSF obstruction? Why does the dr feel u need this surgery at this time?

The reason I ask, is bcuz not all with chiari need surgery, and if u r as active as u say, u may not be as affected by the chiari....

Everyone is diff   but since u r physically fit and if u do have an obstruction and do need to restore flow, I understand having surgery...but it does come with risks and there is no way to say how long, but ur being active and fit can help u in ur recovery.

That said, it is possible to feel worse post op....and benefits should out weight the risks in choosing do have this surgery. U may feel ok at 6 weeks, u may not...outward signs may appear u r healing like ur stitches/scar...but it is the inside and the nerves that can take up to 2 yrs to heal completely....the more u do post op, may cause u to have set backs....

  No one can tell u b4 surgery if and when u can go back to sports...u have to wait and see.

  Same with the time off school....having the right dr is key!!! Not knowing where u live I will include the dr list for the states....we do have others, but none of the  lists r meant as referrals u do need to research all drs.http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

  "selma"