My 10 year old had decompression surgery on August 1st we have been back to the dr twice once this past week because at the bottom of his incision on the left side started swelling it started out the size of a dime and as of today is the size of an egg :(. The headaches are back and the dr which is not our dr because he is out of town on vacation said this is normal well I dont feel it is!!! Does anyone know where I should go from here please please please help?!? I’m worried sick this is where is patch is and I’m afraid fluid is backing up again!
im so sorry to hear about this!! when is your son's regular doctor back in town?
if he is suffering major symptoms again, i think you should got to A&E
hope he gets better soon x
I would take him to an ER that has a Pediatric ER. It is not normal to have that much fluid. Does he have a fever or is he having problems with stiffness in his neck? I would really take him to the ER. You can even call the DR. on call for your NS and ask which ER to take him to. Please let us know how he is doing. If there is really nothing wrong you will not have any peace of mind until he is checked out.
Tracy Z.
Dear Tamkry:
Tracyz's advise if correct so please get him to the ER. After you make the call to hospital, and NS
they will help you with further assessment, and if you need to call 911, and go by ambulance, don't be afraid to go that route. But your docs will be able to help you make these decisions. Make the calls first, and then this is where the medical personnel are trained to assist you. They will ask you further questions in their assessment of your son's condition. Tracy's advice is wise on going to a nearby pediatic ER, and where they treat Pediatric patients. This is very important.
use you have a 10 year old. I will be praying for you too. God bless, Mary Lou
I contacted his nuersurgeon or the one on call and he told me not to fret that it was normal and that it will go down but that if it continues to increase in size to bring him to the ER there which is 2 and a half hours from here! I guess we will just go day by day for now!
How frightening for you! My child also developed the fluid under her incision along with nausea and headaches. Unless the fluid is leaking through the incision the doctors don’t think this is an emergency. I would watch him for fever, vomiting or leakage as my child had aseptic meningitis 10 days after her surgery and she had everything but the leakage, and the worst headache of her life. Even worse than surgery. Please let us know how he is doing.
Sorry to hear of the issues. It sounds like your child has developed a pseudomeningocele(CSF leak through the dura, the covering of the brain, but not through the skin). Many of these patients are very symptomatic. However, if the subcutaneous pressure(under the skin) and the intradural pressure(where the CSF belongs) reach steady state, the body will often close the leak on its own, with the CSF absorbing over time. Your MD is practicing benign neglect, which is perfectly appropriate, if your child can tolerate it. As mentioned above, because the CSF may be swishing between the muscles and the brain, sterile meningitis(-itis meaning inflammation, not infection) may occur. Oral steroids help reduce the inflammatory process, but also slow healing. If your child isn't suffering, give them a little longer. If they are suffering, bring them to the ER/office, knowing you may be setting the sequence of events in place, leading to a re-exploration for closure of CSF leak(about half of the first operation). We really rely on patients to let us know how symptomatic they are.
Dr. Trumble, my child had a large pseudo that was very symptomatic including slurred speech, left side numbness, facial drooping along with nausea and headache. Repeat MRI, MRA and EEG ruled out other causes. Her NS was practicing benign neglect for sure! Her NL put her on Diamox and Topamax which relieved her symptoms and reduced if not eliminated the pseudo. Your explanation of equalized pressures makes sense now. The medications helped lower the pressure which helped her dura seal. Now I know why all the pediatric Chiari specialists I consulted recommended the benign neglect approach. Thank you for the explanation.
Glad to hear things worked out well. This really is where it takes a team(including the patients as part of the team) to know where to go and when to cut. Remember, you are talking to surgeons, we like to operate. We just want to make sure we're going to help the patients. Everyone has a bias. A surgeon's bias is to operate.
Thank you so much Dr.Trumble your words actually are comforting to me right now :). We go see his surgeon on September 6th so I am just watching it closely and it looks as though the bottom of his incision where the last 2 stitches were is about to bust almost like a big blister is this normal this is just as of today!
No, that is not normal. It sounds like it is time to have your neurosurgeon take another look at it.
Ok I am going to call them again today! I am so sick of getting told this is normal!
Please let us know how your son is doing!
Who is this Dr. Trumble and where has he/she been all our lives 
Running the busiest solo pediatric neurosurgery practice in the US. Honestly, just google me, I'll show up. I broke down and added a partner about 2 years ago and all my kids are middle school or older so I'm trying to do a little more outreach/patient support now. Thanks for the kind words though.