sticky neck and pain and water sensation in legs

[Krisbenge]

Hi My daughter is 3.5 years old, in February 2008 she was diagnosed with a 4cm brain tumor, the whole tumor was removed and it was a benign tumor a choroid plexus papilloma. After the surgery she was left with a permanent facial palsy on her right side and also has no feeling in her face we have had a nerve study done that shows the nerves are completely dead. she has also lost the hearing on the right side from the nerve being damaged during surgery. she keeps developing an ulcer on her right eye so that has now been closed with a permanent tassorrophy. she has learn t to walk again and her coordination is coming along well still has a lot of falls but is going well. Since the surgery she had mild sensory problems when touch but nothing too bad. over the past few months this has gotten a lot worse she is complaining the clothing from the waist down is hurting she is oftern hot to touch but no tememperature and only in that area she refuses to wear socks and screams in pain if you put them on yet everywhere else she has a huge pain tolerance. she often refuses to wear clothing from the waist down and she misses many days at preschool which she loves because some days the pain gets too much and we cannot find anything comfortable. there is no particular material that she prefers something that is comfortable one day is not the next. she has also developed at sensation under her chin around her neck and says that it is stick we wash and wash it but the sensation does not go away. she has also been complaining that she is feeling like her legs are wet and screams for us to dry them but there is not water there and they are dry. we also found out a few months ago the she has a mild hearing loss in the left ear requiring a hearing aid we have had about 6  hearing test done in the last 6 months and they have all confirmed the same result. we have spoken to our neurosurgeon about these new symptoms and he is stumped he does not think that it is related to the original tumor and its removal.  Please help i don't know what to do but I know there is something really wrong. She has MRI scans every 3 months the brain space has not healed from surgery yet and the tumor that was pushing on the brain stem has left the brain stem slightly pushed to the left other than this there is no evidence of the tumor returning or a new one. any suggestions would be appreciated. Thank you for your time

[luppygirl]

I think when i comes to your children's health there is no such thing as over reacting.  You are her mother and you know when something isn't right. Go with your gut and get as many different opinions from different Dr's until they are able find and hopefully fix whatever is going on.  I wish the best for you and you daughter.  Not very fun for such a young kid.  It really *****!!!!!

[Tuckamore]

Hello Kris,

Welcome to the Pain Management Forum. There are no physicians here, only concerned and supportive chronic pain sufferers to respond to posts. We don't often get posts concerning children. And as you know there are not small adults. The treatment for children is so very different from that of adults. And a child's symptoms can mean different things than they would in an adult. There are just so much more complex.

Her symptoms certainly sound nerve related to me. They sound similar to symptoms of  RSD. Has she had a complete scan of her body, including her spine? If not I would request one. I would want to make sure that she does not have something else going on that is may not even be related to her tumor. I hope you are seeing the very best pediatric neurosurgeons and neurologist. If she has not been seen in a large medical facility that is on the cutting edge of procedures and practices, I urge you to take her to one. In my state that would be our large university hospital. I'm sure every state has a similar facility. When it comes to our children only the best will do.

You are not crazy, you are your child's voice and advocate. Mother's know better than anyone else what is normal for their child. Make sure you have a physician that believes that and not only listens to your concerns but reacts to them.

I am so very sorry that you and your daughter are going through such medical turmoil. Pain can be horrific but words cannot describe what it must be like for an innocent 3.5 year old.  My heart goes out to you. When my son was a baby and than a  toddler he too suffer complex medical issues. I was viewed as an over reactive mother. But I persisted in my quest for answers and found them after numerous trips to various physican in several locations. So if you are not satisfied with the answers you are getting look elsewhere. You are doing the right thing by demanding an MRI. If that shows nothing continue your search.

Please let us know how you and your daughter are doing. I will look forward to your updates. Take Care, Tuck

[nick30]

i dont think you're over-reacting, those symptoms are quite obvious, hope someone with more exp than me will see ur post. good luck

nick

[Krisbenge]

Hi Nick, Thankyou for your reply the biobsy was done once the tumor was removed there it was 4cm big and wrapped around all the facial nerves, we had a year of battling with doctors it started off with bad behaviour but because she had just turned 2 all the doctors kept telling me it was terrible 2s, but I already have 2 older children and new this was something else she was getting very frustrated sleeping alot and very violet but with herself, she would throw herself into wall and make her nose bleed, bite herself and so on 6 months went on and the doctors started telling me that I needed counciling if i was not coping with my children, then she started have blank stares. then she woke up one morning with a crooked neck and i took her to the physio they said it was not muscular. the tumor still was not diagnosed for another 4 months anyway christmas came and she was sitting with her sisters eating an iceblock and she could not get it in her mouth her hands were shaking and uncoordinated then i took my mother and mother inlaw to a new pediatrician and demanded an MRI he did not think it nessasary but to shut me up he did it. and then it all started.....none of the symptoms she is having now where happening before the surgery. The tumor that she had was quite rare and is know sometimes to have drop matastisis into the spine so i am pushing for another MRI to check but they think i am crazy again and over reacting.

Kris

[nick30]

you need a 2nd opinion from another Neuro, and possibly a 3rd. I doubt that a Neuro would admit that his own surgery could cause such extensive problems for such a young girl. I have several Dr's in my own family and the stories they tell about neuro-surgeons(and thier notorious love of themselves)are commonplace. I am not definately saying that the surgeon caused it but lets face it. if she was ok b4 the surgery and not after - well.....
I am very sorry that your dauhter(and you) are going thru this. I hope her symptoms can be alleviated to some extent.
was a biopsy done on the tumor b4 the surgery? or was it in such a place as to make it a one-proceedure only event? how did you know that she had the tumor in the first place? did she have symptoms beforehand? any extra info may be helpful especially to others on this forum who are medically trained, best of luck,

Nick.