View Full Version : Second Opinion or not. Thoughts please!
Some people on here might remember me talking about Jack and his PRoblems
He has Hydrochepalus (fluid on the brain) and also an arachnoid cyst underneath his brain.
Jack is a little bit (well I think only a little bit anyway) Developmentally delayed.
We are unsure if this is because of these issues or not. They think it is. Paed, Neurosurgeon and Physio.
They said by the age of one though the size of his head should start to not look so disproportioned to his body. And should kinda stop growing, not shrink but slow down alot.
But at 11.2 months it is showing no signs of slowing down at all it is still growing at a Very steady rate.
His body and weight are 50%percent whilst his head is off the top of the charts.
When I went to the neuro surgeon about 4 months ago he said just leave it unless it gets worse.
Well what if its too late then.?? What if the damage cannot be undone?? Does anyone know how safe it is to wait.
By no means do I want my son having unneccessary brain surgery but I also dont want him to have this problem forever!!
Please give me some advice a close friend of mine really think I need a second opinion fast but I just wanted some other opinions first.
Its sad to think my perfect little son isnt so perfect and it is just so hard when I think he has caught up only to have countless people remind me that he is still quite lacking in his skills.:thumbsdown: :gloomy: :crying:
So any advice would be great!! If I have seemingly left anything out just ask.:ecomcity:
What would they do about it if they decided to do something - put a shunt in to drain the fluid? Would they also remove the cyst?
I guess they are hesitant because surgery with such a little one has such high risks - and as long as they are monitoring the fluid and cyst to make sure they don't cause any damage then I guess they think there is no harm is leaving it till he is a bit older?
Depending on where the cyst is and what part of the brain it is affecting, it may or may not be be contributing to developmental delay. I wouldn't so, as if his brain was actually being 'damaged' - he would have very specific areas of dcreased functioning rather than jsut general developmental delays iykwim?
Anyway - you should get a scond opinion, even if all it does is put your mind at eaase. Your docs may be right and there may be absolutely no need for surgery, but it would feel better to hear if from more people so you know you are doing the right thing!
P.S. Don't worry about what other people think - so many other children are developmentally delayed WITHOUT any cysts or fluid on the brain :)
Yes they would put a shunt in. They would also drain the cyst.
Its on his left temporal lobe. at the front.
The prob is though they are not continuosly checking the fluid levels they are only checking his head circumfrence which they said should really slow down or stop growing. But it is still growing at the same rate.
They said ages ago if its till growing when he is 2 they will do something I can imagine how disproportioate he would look then his head is only 2 cm shy of his 4 yo brother.
I think if you have asked about getting a second opinion you need to get one..
You would never be able to forgive your self if you don't..
You bub should be getting U/S done to see if the cyst is getting bigger I would be going to the Dr and telling them that i want some test done to find out what is going on in there..
This is his brain not somthing you should be sitting back and waiting for something to happen before they act..
Don't be scared to go to the Dr and stand your ground tell them what you want to happen you will feel much better..
Big hugs for you :hugs:
First Big Hugs:hugs:. I agree with the other ladies that if you feel you want a second opinion then go for it. :hugs: For you little boy
Thanks for that guys!!
I told my Dp this morning as I thought he wouyld get a little mad that I am bringing it up again and he said if It will calm my mind then we can get one.
Although I was speaking to one of my mums friends about it this morning and apparently her grandson had something similar and the doc didnt operate or keep checking or anything and it was because they couldnt afford to pay.
Her DIL took him to a playgroup where all the kids had the same thing going on and she spoke to another mum who goes to the same neurosurgeon and they where fixing it the next week because she said she could pay for it. Apparently like 6k.:barf:
But our friends family had to go under medicare and the doctor was hesitate to go do it for them.
I use to look after a little boy with this condition his head didn't stop growing and they did put a shunt in but when he was about 3. I hope you get some answers soon. Poor little Jack:hugs: one for you :hugs: one for him
Definitely get a second opinion. Are there any support groups that you can also make contact with?
My daughter's head grew rapidly as a baby so much so that the paed wanted her to have a cranial ultrasound. She is ok and thought to have had just a head growth spurt. I did a lot of research about hydrochelalas and think there was an Australian association.
Sending lots of hugs your way:hugs: :hugs: :hugs:
My DS has Hydrocephulus & had a shunt put in at 5 days old. I thought they done it straight away with that. At 4 months old as soon as they saw an increase in his head circumfrence he was straight in theatre. I say get a second opinion. My DF says the same aswell. Good luck.
Thanks for that its great hearing about someone who has the same thing.
Does the shunt hurt your child can you see it.
Hearing your story sounds like mine really is wrong.
If you dont mind me asking did you have to pay for the surgery?
I would get a second opinion just to be on the safe side YKWIM.
Yes, I would get a 2nd opinion. You need to know whether putting in a shunt would take the pressure off his brain and help him catch up with his development.
I've done years of physio, OT, speech therapy etc with one of my children and it does take it's toll on the whole family. If something can be done now, like a shunt, then I would definitely get it done, I know surgery is scary but if it going to help then I would do it.
I would def seek another opinion. And keep seeking until you feel happy/ at ease.
Hugs to you all :hugs:
If surgery is medically indicated it should be done through the public system at no cost to you.
Your options are to go back to the same neurosurgeon and say that you are still concerned or to get a second opinion. You should do one or the other cause you are worried. You said that the neurosurgeon said to come back if you were worried and you are, so why not give that a go first?
Thanks for your opinions, advice and support everyone!!
I am def going to get a second opinion!!
Now I am just going to be worried and panic until then!
I just rang up and i cant get an appt with the neurosurgeon till Feb next year!!
I think the poll says it all hun.
Go and get that other opinion:yes:
Do it asap!
Call if you need anything hun.:hugs:
From 'a close friend'.... lol:p
Ring up the neurosurgeon every other day and make sure they know to ring you if someone cancels.
The other thing you can do is go to your Dr and have a cry and tell them how worried you are and see if her can ring and get you an appoitment most of the surgeon have spots on there list for paitents that the Dr or the nurses ring up from hospital to get patients in to see them...
Cath, def get a second opinion. I would even try another pead - what about Dr Freelander? He had us an appointment with Australia's leading children's neurosurgeon at Westmead within a week for Elliot when we had his brain scare...
As for people reminding you about Jack;s lacking skills - ignore them. Unless they are doing it from a point of concern for Jack's health, then I would just tell them that you are under the care of professionals and don't need to be worried about it anymore.
And no matter what happens, Jack will always be 'perfect' in yours and Dan's eyes. If there are going to be developmental delays with Jack, the most important thing you can do is find out what you can do to help him - and the first thing you need to do is overcome the stigma attached with the label.
Prayers for everything to be fine. You need to make this a priority to get something done now.
Lots of love xxx
:hugs: i know how frustratitng public lists are.
my ds2 is being monitored for what is a suspected cyst on his temple i worry it is hurting him somehow. his lump looks like a marble under his skin and you can feel it too.
i hope you get pushed through faster somehow.a gp can send more then one referal to a waiting list to make sure you are pushed through.its how we have to go about getting my ds1 pushed through (long story but its for grommets)
good luck:fingerscrossed: :hugs:
Thanks everyone for your thoughts and opinions!!
They have all been really helpfull.
Kate~ I have a few issues with Dr F and will not go to see him, he stuffed up my brothers arm really bad when we where younger.
Kris highly recommends him also but then I have other friends who have a family situation like mine that he hasnt helped or has made it worse.
So I guess he is just one of those doctors that you either like or dont no in between.
You should always get a second, and third and fourth opinion. No one doctor no matter how good is totally infalliable
Hello, I agree with everyone else here. Seek a second or third opinion if you need one...you will know when you feel comfortable with it all.
Re: development delay, I hear you loud and clear. My Charlie is delayed and we do physio, OT, speech. We have our ups and downs - sheer joy at even the slightest achievement, with the occasional low when someone drags us down with their ignorance. I'm learning to bounce back from it quicker and quicker though. Like Jack, Charlie is perfect in our eyes. If he "catches up" eventually, brilliant....and if he doesn't so be it! He will be happy and loved and we will make sure he is surrounded by the right kind of people :)
My thoughts are with you. I hope you get the answers (and the treatment) you are looking for.
Hi thanks everyone.
So I have been fit in for a follow up appt next week.
I am getting more and more worried as the time continues.
Jack keeps hitting his head and this scares me because I dont want him to make the problems going on inside there worse AND i think alot of the time he hits his head on purpose.
Or I just guess I think this way because I dont think a 1 year old should be doing that..
He will crawl up to the tv cabnet and normally stand up holding onto it but he just goes up lately and hits his head really hard then pulls his head back and does it again.
Or he will go to the coffe table or a wall and do it until I pick him up or "lock him up" so he cant do it. RE: pram or cot.
I have even invested now in a playpen for him, it is part his bday present because Im scared he is going to hurt himself.
I grow more worried everyday. I also worry that they will think him hitting his head is my fault or something.
i just wanna send you heaps of love :hugs::hugs: and best wishes
I will join in the chorus shouting getting another opinion even though im coming into this really late :o
Boof was diagnosed with hydrocephalis when in utero i was terrified. It meant further u/s's etc but we were very lucky that his cleared up by the time i hit 35wks which meant no intervention.
Now i was told that he would require possibly an op while in utero if they thought it to severe otherwise an op after he was born. I thought it was standard a shunt was put in ?! So im curious as to why they would have held you off :confused:
I wouldnt worry to much if he is head banging out of frustration as this is very common for his age but obviously very scary for you due to his condition. Boof did it from around 9mths & continued probably up until 18mths & still does it at times. But if you feel its not a frustration type tantrum issue then definately talk about it at your appt.
I really hope you can get this sorted soon & maybe if the local hospy doesnt help you out you need to head to the Childrens Hospy & shout to be heard !
Good luck :hugs:
I will let you all know how the appointment goes.
Its just so frightening.
I tell some family friends about it and they are all like and when did you get your doctors degree.
They know what they are doing just leave it.
I hope they do something instead of just blowing me of this time!!
Its so patronising!!
I just read in the pamplet we got given about babies with hydrocepalus that its normally genetic AND that it causes bubs to Vomit which he does all the time and that it makes it difficult for them to walk.
Amongst the things we already know he has like developmental delay.
I know if I push it though asking them to re look over him that they will want to do another MRi and that was one of the scariest things I have had to go through watching my son be put under anesthetic like that.
Im so sad right now reading these things.
The paper also says that left untreated paitients may also become Severly disabled forever!!!
Thats way worse than developmental delay!!!
The paper also says that left untreated paitients may also become Severly disabled forever!!!
Thats way worse than developmental delay!!!
See thats what worried me when i read this.
I was told all of this including how if its left they can become brain damaged etc which was why an in utero op was possible.
I dont want to scare you but really push this & push hard .... Its not good enough !!!!
I know the MRi is scary heck was scary watching my DP go through it knowin he had metal in him !!! So i can only imagine what it is like seeing your little man go through it but if this is how you can get treatment then do it !!!!!
Really hope all goes well :hugs:
OH, Cat, I can't stress enough how importasnt a 2nd opinion is! PLease put aside what you have heard and what has happened in the past with Dr F, go see him, he is fantastic! Tell him I sent you or even tell him Larraine sent you. If you don't like what he says I see Dr Dunstan, or Dr Bent, both are fantastic but also very very busy.
Call tomorow and make an appointmen, or as soon as you can. It won't hurt for you to get him checked by a couple more Drs.
I know if it were one of the girls I would be getting a 102nd opinion if need be.
If you don't like what is happening (or lack of)
get another opinion. I have been saying this for a long time, its about time you did something about it.
I'm always here for you and the boys you know that hunny.
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