I am 37 years old, a full time college student and a single mom of 2 gorgeous children. One super 10 year old girl who has been through a lot and a totally healthy 3 year old boy! I was born with XLH and suffer from debilitating migraines. My daughter, Madalyn, was also born with XLH and over the summer was also diagnosed with migraines. Brett, who we call, 'The Boy' was very fortunate...the XLH skipped him.
The last month of our lives has just been My 10 year old daughter had been getting more and more headaches and migraines, then she started complaining more and more of all kinds of other random issues that she'd periodically been having the last few months. Her vision would 'blur out', she was constantly feeling nauseated, she would 'blank out', get dizzy, disoriented, left arm numbness and pain. So I called her pedi back and asked if we could re-visit her migraines and so she asked for an MRI- the very next morning I got a call saying we needed to see a NeuroSurgeon right away- like THE NEXT MORNING AT 8AM!! So I am freaking out at this point.... we go to Austin to Dell Children's Hospital – Neuro-Surgery Center and meet Dr. Mark Lee. He diagnosed my daughter with Hydrocephalus and a Chiari Malformation, Type 1. He explained what needs to be done to correct my childs problem, so we can get Madi her life back.
We went in for surgery almost immediately. Dr. Lee put an ICP monitor in, we stayed in the hospital for 3 days while they were measuring the pressures. The good thing that came out of this procedure was that it was determined the Hydrocephalus was not causing the symptoms (therefore Madalyn did not need to have an LV Shunt put in). The bad- what needs to take place is a Chiari Decompression. While this is the more 'hairy' operation of the two, this means that she is not in a life threatening situation as she would have been considered if it would have been the other way around. (This is how they explained it to me.)
So fast forward about 2 weeks, Madalyn's surgery date is set for this Wednesday November 21st. Dr. Lee took his time explaining exactly what would be done to her to correct the malformation. First would be the shaving of the skull to widen the opening to what it should be to allow the brain room to expand and grow and basically rise out of the spinal canal where it is currently herniating at 9mm He will not be performing the traditional 'duraplasty' but instead he will be extricating all the layers, by simply peeling each away and leaving just the very last super thin layer of the dura which is like a 'saran wrap' consistency. He will also be removing the C1. He explained the different method relating to the dura is a more painful and harder recovery for the patient, but this method sees less complications and risks.
I am very nervous, as expected. Madalyn doesn't even want to talk about it. She has no questions and doesn't want to be informed. She just wants to hurry and get it over with, she just wants to feel good again. I am also nervous that when I come home, I don't know how I am going to protect her from my 3 year old. While he is a fairly good child, there is a lot of sibling rivalry in my house. He also has temper issues and is really aggressive. We found ourselves in the ER getting a CT scan 2 days after coming home from her ICP procedure because he hit her in the head next to her incision cite out of some random moment of rage. I am truly concerned that her safety may be an issue once we get home because of my limited support with my younger child.
So....questions to you out there that have already had Decompressions and been through your recovery...
1. Her pediatrician suggested she sleep in a recliner. I do not have one. Is this something that I truly should make an investment in? I do not have the money for one, would insurance pay for one if it is medically necessary for her recovery?
2. Realistically, how soon is it that she should be able to move around freely?
3. I have a friend who had this procedure and she had to learn to talk again- what would cause that and how frequently is that sort of incidence?
3. What tips would you give to someone that has no idea what to expect and the medical staff probably won't think to tell us prior to, so we can be prepared before coming home? I won't be able to just get up and run to the store to buy comfort items as I would be the only one with these 2 kiddos.
4. Clothing, she probably won't be able to pull t-shirts on, or a hoodie...what should I pack to bring her home in? Our drive home is an hour and a half- what will she need to be comfortable in the car?
Dell Children's Hospital is not a very large Children's Hospital, but they should be able to help you with some of your questions. Many Children's Hospitals have a "Child Life" department where people are trained in helping families with the transition from inpatient to home care.
I am an adult that had the surgery (there are four types of Chiari malformations, two of them common), so my recovery is probably not relevant. I don't think a recliner is necessary for healing, and insurance would almost certainly not pay for such a piece of equipment. If something is needed, they normally issue it (it is called durable medical equipment, or DME).
The medical staff knows a lot about what to say when you are in the hospital, probably less talk on after you come home. I would recommend writing down questions so you don't forget. You can ask to see a copy of what you will get at discharge - certainly there is paperwork to show what to expect. And then ask questions on parts you don't understand.
Some questions leap to mind for me:
1. When can she take a shower?
2. What do I need to know about wound care?
3. How much can she lift when she gets home?
4. When can she play/ride a bike/swim?
5. What symptoms should I look for if she would need to come back to the hospital? (the two things I am aware of are surgical site infection, but ask what it looks like, and CNF leakage; both are rare) You mentioned someone learning to talk again - I don't know what causes that, but it sounds like something went wrong with the surgery; my examples are when the surgery goes right.
6. Are there any exercises that she can do to help her healing?
You will also want to line up her schoolwork so she does not fall behind.
Many of ur questions should be directed to ur Dr and the hospital staff as all do things differently...and ur ins as to what it will cover regarding the recliner...I have one and did use it. Not all found it necessary, but if the Dr wants it and will RX it u may have to check with ur is first.
Once ur DD is out of ICU they get us up and walking with a walker....so it all depends on her and how she responds to meds and the surgery for me it was 2.5 days and then I was up and then moved to a reg room.
As I have said we are all diff and have other issues in addition to chiari...there are related issues....and they should all be ruled out b4 surgery as they can affect how one feels and heals post op. I know ur DD does not have ICP now, but it is something that can develop post op....no one knows y...and soem may develop a CSF leak, this can be due to just about nething, but if one also has ehlers-danlos stitches can tear...and CSF leaks happen more often and are not rare....if they were I would not see as many as I do...for a Dr that does not treat just Chiari patients, it may be rare for them to see it...but that does not make the occurrence rare...just as chiari is not rare.
Deep V neck T's are a good item as they work well....bog fluffy pillows for the ride home....make sure she has her meds just b4 u leave the hospital and ask for the prescription the night b4 so u can have it filled b4 her discharge.U need to stay on the schedule for pain meds, not wait till she has pain otherwise they r not effective.
We do have a list in the Health Pages on tips for the hospital stay-http://www.medhelp.org/health_pages/list?cid=186
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