My wife and i have a little girl called Florence. She's just turned two. (sept 2010)
She was born with a sacral dimple, which in fact is the same as mine. Nothing to worry about. My wife however wanted scans etc when she was born, and the scans came back normal.
When Florence was about 18 months old, she fell off a sofa and knocked herself out. She was only gone for about 2 minutes and gave her mother a real scare. The hospital said everything was fine.
From 18 months - 23 months old, she had about 1 episode like this every month. She falls off something, gets a shock, holds her breath, goes floppy, eyes roll back and spasms in hands and feet sometimes, passes out. In fact the last few times Florence has been intercepted before passing out by her mother who gets her attention and gets her to breath, which resolves the situation. She then cries normally for a minute before forgetting the whole thing.
Halfway through this period my wife requested a full MRI of the brain and back area, just to be safe.
The MRI results were normal, except for a 10-15mm chiari malformation and some signalling in the medulla. The neurosurgeon wanted us to bring Florence in and deal with the issue, since her episodes might well be a connected. She had no other symptoms, but the neurosurgeon felt that the MRI showed a serious problem.
After much wrangling and agony we eventually agreed that surgery might be a sensible option but only on the basis of the MRI result. As parents we feel that in fact she was growing out of these holding breath episodes which we understand might easily be 'Reflex Anoxic Siezure' events, which are common and not very serious.
I spoke to all the doctors in my family (3 of them) and they all agreed that surgery was a good idea based on the MRI result.
My wife and i finally agreed when told that given the size of it and the signalling on the medulla, (a)it was a miracle she didnt have more symnptoms, (b)she would soon get symptoms, (c) the inevitable surgery at 2 would be better than surgery at 5 or 15 or 25+ (d) she would make a full recovery and very quickly.
The surgery was carried out last friday. The neurosurgeon said it was a straightforward success with no complications. He said there was a real restriction in the area and that he had taken part of C1 and C2 and that now there was enough room for the enlarged tonsils and for the fluid to move about etc. We were very relieved.
Originally we were told Florence would only require 4 or 5 days of observation before being allowed home. It is now 7 days later and she is still in hospital. Florence is on a little rollercoaster. When the pain medication works (paracetamol and ibuprofen and ocassional codeine once a day or so) she moves about, can walk etc and will eat and drink a little bit. When the pain medication is wearing off or before it takes effect she is not all happy. She only wants to be held or lay in bed and wont eat or drink anything.
after reading some of the post op comments from chiari sufferers i am now extremely worried that Florence might suffer long term pain. here are some questions:
1. exactly what/why is this pain?
2. did the surgeon CUT the muscles at the back of her head in order to carry out the decompression surgery? i thought he would have simply moved them to the side.
3. how long is this going to go on for?
4. is she now going to suffer permanently from this surgery?
I am slightly terrified that we have been talked into having this surgery on our little girl, when in fact she was completely normal, without any symptoms. We have done something to her which was recommended by the medical experts, but which might have been a crude and unnecessary preventative measure. If this is the case i want to know. Can anyone offer me some advice?
Hi Nick. First I am so sorry that your Daughter is going through this.
Many of us with Chiari suffer from "drop attacks" or Syncope witch is like a seizure but we remain Consciousness.
Many of us also have had symptoms from childhood that we thought were normal, problems that were subtle like poor balance & coordination, pain etc....
For an adult the surgery is difficult but for a child it must be a huge ordeal.
Decompression surgery will involve some associated trauma in the area of the brain & spine, the dura surrounding the brain and spinal cord in the area is cut to allow room and this will take time to heal.
It is imposable to say how long the pain will last for or if the surgery was a success. The problem with CM is the associated conditions such as Hydrocephalus & Syringomyelia that can develop due to obstruction of CSF.
I pray that the remainder of Florence's recovery is pain free and the surgery proves to be a success.
I'm sorry your daughter is going through this and I'm sorry you as parents had to make the decision for surgery and now questioning it.
I was just dx 2 months ago so I'm still learning but I first just wanted to say that try not to blame yourselves or feel it's your fault for making the decision to go through with surgery. It's only been one week and I've heard from so many that it can take up to a month to start feeling a little better. I pray your daughter heals fast and is able to come home soon as her normal self. But don't be so quick to regret the decision bc most people go years and years without the proper dx and it's not until the chiari causes more serious problems that could be permanent then find out they have it.
Sorry I didn't answer your questions, I've never been through the surgery but just wanted to let you know your daughter and family is in my thoughts and prayers!
I am sure this is a very difficult time, and very stressful as well as frustrating. Ur DD is in the beginning stages of healing, and it does take time.....we all respond differently to the surgery and meds.
The pain she is experiencing now may be from the surgery....we do tend to have symptoms reappear as we heal....and from what most chiari NS will tell u, it takes up to a full 2 yrs for us to heal completely.
I am sure her age is the reason for the added time frame.
How does her scar look?.....I would also think that she would still be on a schedule of meds,.....see that she gets it on time, not after the pain starts...it takes longer once the onset process begins....many adults will tell u that is what we learned dealing with this...unfortunately she can not tell u....and is probably doing so refusing to move.
Let her rest as much as possible, there r exercises for the neck so it heals with out getting too tight.
As far as cutting muscle verses moving it, u would have to ask ur chiari drs what they did.Drs all have their own way of doing things.U will want to know if they used a patch for her dura...then what type was used.
Children are more resilient than adults and tend to bounce back better than we do...but, as adults we tend to lack patience....we want things fixed...all the surgery does is slow progression and help avoid the formation of a syrinx.
Since ur DD had overcrowding, it is best she had this taken care of.....given the symptoms she did have.....she may have had others and was not able to communicate them....as many of us did, we compensate for it and assume it is normal.
Sending prayers ur way, for u and ur DW that u both are able to deal with this with as little stress as possible, and for ur DD and all in charge of her care.
Thanks for your comments. I am pleased to report that 6 weeks after her OP, Florence made a near complete recovery.
Heres a note i wrote about 3 weeks ago (and 3 weeks after the OP) -
We left the hospital after 10 days. The reason we stayed so long is that she wasn't eating or drinking properly, a problem which was exacerbated when the pain was up. However when we left, she seemed to get much better much quicker, as if the hospital or routine of being in hospital had somehow given her behavioural traits. She came home and realised that she could 'be at home' and that everything could go back to normal. She started eating more and drinking more.
Since then i have been urging my wife to ween Florence off the meds, which right now is only Calpol (http://www.veryhappypig.com/page/ca1.jpg) twice a day or so, but in fact the doctor and other people have suggested that we shouldn't rush her in her recovery. The pain is still there and it affects her appetite. We are told that her recovery could take up to 3 months or even 6 months. I am actually wondering if the discomfort she is feeling is down to the large, probably itchy, scab on the back of her head.
Right now (22 days after the OP) she is in near normal health which is excellent. She does complain about the pain, by crying and holding her hand up to her head, but this passes pretty quickly as soon as she takes some of the Calpol, which suggests to me that some of it is more drama than real, but if this medicine (paracetamol and/or ibuprofen) isnt too strong/toxic i dont see the harm.
He neck movement is strong and confident, with exception to looking straight up, which she does with a robotic movement of the shoulders, if you know what i mean. I think this is due to the scab on the wound, which will be dry and not very stretchy. We're also placing a dressing on it at night so that she doesnt pick at it.
Now, almost exactly 6 weeks after the operation, Florence has been off the meds for about 10 days and her movements are confident and strong, and we have to remind ourselves she needs protecting from her older brothers. There is a very faint hint of weakness in her neck when she looks straight up but its not something that anyone would notice. That will soon vanish.
The wound has healed, though its not as neat as it could have been. The nurses stupidly put on a waterproof dressing when we left the hospital and less than 12 hours later the wound was a gungy mess and very inflamed. These things should be left to breathe. Now florences scar is bigger and more irregular than it should have been. still shes only two. when shes 12 it will probably be invisible.
I believe the surgeon did not perform a duraplasty, because there was not enough room. He removed part of the base of the skull and part of C1. I dont know if this information is relevant to her recovery time. It was a pretty routine decompression surgery.
All in all we are very relieved that she is through this. We were terrified that our little girl was going to be incontrovertibly and psychologically altered by this operation, but she is still the same happy little object of enchantment, thank god.
I wonder if my initial post may have been triggered by the probably misrepresentative posts here on the internet. My wife reckons that happy people are busy getting on with the happy things in life and aren't spending time writing about their Chiaris on forums. They don't need support and they don't have questions that need answers. So what we read is instantly and unanimously worrying. My writing here might help to redress the balance a little, if there thousands of 'fixed chiaris' and only a handful of lingering post-op chiari problems.
If someone is reading this and has to make a decision, to operate, on behalf of their child, i can confirm its the hardest thing in the world. Its cruel and unfair and unjust to make this decision yours, but you have to make it. Good luck.
We were certainly helped by having a very good surgeon, who worked very hard to gain our trust. His skill as a surgeon in carrying out a flawless operation on Florence was matched by his very adept handling of us as parents. He encouraged us to get second opinions, he was very patient with our endless questions and fear of the unknown. This whole experience would have been much harder for us without him - he allowed us to return to normal as quickly as possible in order to be there for Florence.
Short paragraph from the wife:
Florence has fallen off things at least 3 times recently and hasn't even been close to passing out. I call this a result - this surgery has fixed this breathing issue. Thats the opinion i will probably share with the surgeon.
Hopefully all this will still be here when Florence is old enough to read. I hope she realises how much agony we went through - this was a terrible landmark in our lives, but pain is not long in the memory, judging by the way my wife has forgotton what childbirth was like (after 3 times).
THANK GOD we got through this. We are really lucky and Florence is really lucky to have had this early fix. She bounced back really fast, but gave us a heart attack on the way.
Heres a few pics
before the op: http://tinyurl.com/2eweuch
during brain scan: http://tinyurl.com/29jo96k
7 days after op, still in hospital: http://tinyurl.com/27wtt4z
6 weeks after, bouncing on the sofa: http://tinyurl.com/38lnpva
Good luck to all with your decisions, OPs, and recoveries.
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