son has decompression surgery this Monday

[LeslieAnne3811]

Hi everyone,  I just found this forum and have been reading it for hours.  Thank you all for sharing your stories and knowledge!  I have a 19 year old son who was diagnosed with Chiari Malformation and has decompression surgery scheduled for Monday Oct 6. He also has Craniometaphyseal Dysplasia.  His symptoms have been; headaches, high blood pressure, choking, falling, ringing in his ears and a bowel obstruction. He has had about 12 surgeries because of the bone dysplasia but this one scares him a little.  Does anyone have info on someone with a bone dyspl asia and their recovery? His bones are very dense and thick.

[Elisaandbucky]

I am also reading through this thread and I want to ask you how your son is doing - four months later. Has his recovery been steady? I guess he will have a post-surgery visit soon. Please tell him that he is still in our thoughts. You, also, are in my thoughts. I am a mother, so I can imagine that this time has been difficult for you. My son has a neurological condition that causes seizures, and I worry about him every time he leaves the house for school. I hope that you are still current on this forum so you can see that our support can still be a comfort for you and your son.

[blinddreams]

I stumbled upon this forum while looking for CMD as I have it too. Wonder how Robert is doing now?

[selmaS]

   Thanks  for  the  update  on Robert....I  am sorry  he  is  struggling   and  this  can  be a slow  process  for  many  of  us....but  slow  and  steady  wins.....so  do  not let  him  rush  thru  recovery....it  will  take  time and it is  best  to  allow  the  body  to take  the  time  it needs....

  <3  ((hugs))  and  prayers  to Robert   for continued   recovery.

[LeslieAnne3811]

Hi everyone.  Robert is post Chiari decompression 4 weeks tomorrow.  It's been rough.  The surgery took almost 12 hours.  He woke up in pain, vomiting and feeling like he couldn't breath. He vomited every 15 minutes for over 2 days and developed a tear in his stomach so then started vomiting blood. He stayed in neuro critical care for 3 days then went to neuro acute care for a few more days then home.  4 days later at home started vomiting again, paramedics took him back to hospital and he was admitted overnight with a stomach bug he probably picked up in the hospital. He's still nauseous and very unsteady walking so has a walker. He sleeps a lot. He does walk every day outside.  We walk several houses down the street and then several houses up the street.  He improves every day but it's slow going.  This has been rough.

[selmaS]

   Hi  and  welcome  to the Chiari forum.

  Craniometaphysical Dysplasia for  those  that do not know  is  a thickening of  the bone.....and  I  could  see  this  being  an  issue  to  cause  flow  of CSF  to be obstructed....but I  am not aware  of  anyone  else so  far  on this  forum with this condition as well as Chiari.....

His  symptoms  do  seem  to be what  most of  us deal with....so he is not alone on that....as  for  the bone being  thicker, this may take  longer for  the surgeon to do this procedure, but as long as he  has confidence in his surgeon then he should be fine....

  This surgery typically can take 3  to 4  hrs,....mine  was 7.5.....we are all different,.....and that  is  ok......

Best advice....expect  the unexpected  and let  his body take all  the time  it  needs  to  recover....no one can  give  a time line on how long b4  he does this or  that...but  it is best not to try for  a few  months as we can feel great and think we  can do things....but doing too much too  soon  can cause  set backs,,.....slow and steady is best.

Please add your DS's name  to our surgery date thread so a Prayer Thread can be posted for him.  http://www.medhelp.org/posts/Chiari-Malformation/-List-ur-Surgery-Dates-2014/show/2049539