11 year old having headaches ...

[Elliesk]

My son had his decompression Dec 16, 2013.
Wondering about recovery experiences anyone can share regarding their children?
My son went back to school three weeks post op. His energy was better and hardly had any pain. Then four days ago he began having headaches. He didn't get. Lot of headaches before surgery. Not bad ones but enough for Tylenol. The headache goes away all day but then comes back in the evening. His energy level wasn't great either but after resting a lot this weekend he seemed a bit more energetic.
Is it normal to get better then slip backwards in recovery?
Maybe he has just been over doing it?
His NS felt that we should move his three month checkup sooner and told me to get in with his neurologist (he also has epilepsy) sooner.
I've heard that things will just take time and I should be patient. Any feedback?
Thank you! :)

[selmaS]

  As the beat goes on said....yes a leak can cause HA's....

I had a CSF leak from an epidural....and it was positional...while laying flat I felt somewhat ok....but standing or sitting up, I felt it on top, the sides all over my head,....

I found that those with a slower leak do not have severe symptoms...such as the nausea and vomiting...and it is possible to have a leak and not have severe symptoms...

We all will feel differently from these issues....but it is important to keep on top of them.

Good luck getting into see a neuro Dr.

[Elliesk]

He has them mostly at the forehead/top of his head.
Sometimes the sides of his head too. Maybe one was at the back of the head. One was near his eye. He hasn't had any dizziness, vision changes or numbness or tingling. Just headaches and fatigue which is intermittent.
I'm noticing a slight pattern that the headaches seem to come when he's getting tired. I'll track it better though to see if I'm right. Mostly AM and PM only.

[The_beat_goes_on]

YES, the leak can cause headaches.  Because of where one of mine is, it is causing csf obstruction and causing chiari headaches (and it's all positional) ... I don't know how detailed your son could get describing his headaches.  I wish I was eleven and I could help you out here more ... hah ... but, there is such a distinct difference between the two types of headaches I'm having now.  The tension headache, more than likely from a muscular / neck issue ... which can last hours and usually stays around my forehead/eyes ... and the distinctly chiari headache.  Starting at the base of my head and radiating ... along with numbness and weakness in my hands to my elbows, and with some visual disturbances too.  

The pseudo that my neurosurgeon is following is also at my operative site ... the CT scan says: a 3 cm fluid collection is seen in the soft tissues at the operative site.  Because our fluid collections are at the operative site (the site where our chiari malformations were obstructing csf flow) it can cause some of the same symptoms.   Hopefully your sons will absorb .. but yes, it can definitely cause headaches.  I hope he's feeling better!

[Elliesk]

Thanks for sharing with me. It helps even though you aren't a child you can relate to what he is going through. Kids aren't good at communication and knowing what he might be experiencing helps a lot.

I'm a little relieved that his brain looked normal.

More to come...getting into the neurology dept soon is proving to be difficult. They are booked. We are on the wait list for the first week of February.  Luckily no headache at all today so far.
Fingers crossed.

[Elliesk]

Would a leak cause the headaches?

[selmaS]

  This is something to watch closely as it may be a leak....

No TV and video games is a good thing...no reading either which is too much as the brain needs to rest...this surgery is a trauma to the brain and I do not think many see it that way.Many Drs refer to this as a simple surgery....it is not simple it is major surgery and can have complications....so I am glad u took him to the ER....

The best way to help this fluid absorb is for him to rest, rest and then rest some more as well as keeping hydrated with water.

Keep us posted...prayers to u both. <3

[The_beat_goes_on]

My ER CT report said the same thing ... fluid build ups at the surgical site ... mine are pseudos but did not say that on the ER report.  I've had other unrelated surgeries ... so I thought I knew what to expect, post-operatively, pain-wise ... but as an adult, I can tell you that it was one of the roughest things I've experienced.  I can't imagine going through it as a kid, but MAN! it would have saved me from 15 years of really debilitating headaches ... it's really rough, but it will hopefully only get better for your son.  Advil relieving pain is a GREAT thing.  I hope you'll keep us updated!  Good luck!

[Elliesk]

Just got back from the ER. He woke up this morning with a really bad headache. I called the NS again and they said to call his neurologist. Within minutes his neurologist called back and said to go get a CT at the ER.
Scan came back normal.
A small bit of fluid at the back of the head that they say will absorb into the system but does take time. Both docs want to follow up with us.  
I will have him do neck stretches.  We've been bad about keeping up with that. Today he slept a lot (except at the ER) and hasn't had a headache at all this evening.
I've also took TV and video games away.  Not as punishment but I have a feeling it's been too much strain on his eyes. Plus the weather here has been changing and allergies have been bad. I have started giving him vitamins. Just trying to think of everything I can do.
Luckily they don't want to add any meds. If Advil is working then we'll keep that up.
As far as atlas and nerve stuff, he doesn't have that. His epilepsy is benign rholandic which children outgrow by the time they are 15. No talk of that stuff but I'll ask at our next visit.
They said it's possibly a headache disorder but my gut says with this normal CT he is probably just still healing. He had a hard time out of surgery. They tell you, "most kids go home after 2-3 days." And "they bounce back faster than adults" but he has had a rough time.
I guess all I can do is help him the best I can and be patient.
My poor little guy!

[The_beat_goes_on]

Hi -

I'm sorry to hear that your son is having issues.  I am not a child, but I also had decompression surgery on the 16th of December and I can tell you that I am still experiencing pain -- and the "neck pain" is making me hold my head up differently .... it's hard to explain ... but almost like I'm over-compensating some how and some of the headaches I'm having are more like tension headaches (a lot of the times in my forehead)

Has he had any scans since his surgery?  I've had a few CT scans that have confirmed some post-operative issues that can also cause pain.  Pseudomeningoceles in particular.  One of mine is not "closed" so its a small, active leak, and when I cough or laugh or bend over, etc ... I definitely feel it.

I hope you're able to get to the bottom of his pain!

[selmaS]

  That is possible...did he do exercises for his neck post op?

Hmm, some can have issues with the synthetic patch...but he shows no signs of rejection so I am sure that is not his issue.

The vagus nerve can cause seizures,and tummy issues....

The atlas is an area  that if out of alignment can cause many issues with numbness etc...and it is often missed .

Deff have him do neck exercises and use heat b4 and after him doing the exercises....no harm in trying it and ruling that out...or finding u r right and he will feel better.

[Elliesk]

a misaligned atlas or vagus nerve impingement? Not sure what that is?

I believe the patch is synthetic. I asked about the bovine or human and they said no.

He seems to get headaches when he yawns or moves his head around. I'm starting to think it's more muscular. ?
Maybe his neck is too stiff?

[selmaS]

Another thought...have they ever mentioned he may have a misaligned atlas or vagus nerve impingement?

[selmaS]

  Ok....well with that much going on it will take time for him to heal...and it is normal to have symptoms crop up, I think he is over doing it....school can be stressful regardless of age, plus he is reading and concentrating....which, is difficult for someone with Chiari ....let alone post op.

I do not know if he feels he is doing too much, but IMHO that is part of what is going on....

With Chiari even tho we have had surgery it is possible to continue to have symptoms....surgery is not to get rid of symptoms....it is a means to restore CSF flow and slow progression.

U mentioned a graft...u mean a dura patch? Do u know what type of patch was used? Synthetic, bovine, cadaver or his own skin?

[Elliesk]

PS. He had numbness and tingling in hands and feet. Mostly hands and we always thought that was due to the epilepsy. He would get headaches after heavy exertion.
Back in September he had a series of seizures. In the days following he began having headaches that felt like a bullet was going through his brain. This lead to an MRI with and without contrast. They found a 20mm herniation. They then did a spinal MRI and found a syrinx. Surgery included widening the skull at the base, cauterizing the cerebellum, and putting in a graft.

I'm also suspicious that his epilepsy is part of it. We originally thought the tingling/numbness was an aura. Now it turns out it's chiari.

[selmaS]

  What was the prominent symptom that was the reason  he had surgery?

It does take time to heal and rushing things can cause the HA's to return and it is also possible to develop related conditions or trigger one that was underlying and unnoticed b4 surgery.

U may want to get a school bag that is on wheels so he is not carrying the books....and see if cutting his days down a little helps....

[Elliesk]

Thanks!
Yes he is in full time. They do let him rest when he needs it as well as during recess and lunch.

My concern is that he didn't have this many headaches before surgery.

[selmaS]

Hi and welcome to the Chiari forum.

Many times we feel 100% better post op...much of it is due to the CSF flow being restored and the meds used during surgery and pain meds post op.

We may be tempted to do too much too soon and yes, we can have symptoms begin to crop back up.

Is ur son back to school full time? Just carrying books and doing stairs can  be too much, but then most schools u have florescent lighting which many of us are affected by, and reading...even tho the incision looks healed, there is much more that needs to heal inside and this can take up to 2 yrs....

U may want him to cut back a little and see if it helps....

The guideline for some symptoms to return (which is part of the healing process) is generally around 3 months post op....if we do too much b4 that we may begin to experience them sooner.

May I ask what symptoms ur DS had that surgery was done?