5 yr old possible pseudo tumor cerebri

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5 yr old possible pseudo tumor cerebri

Postby momof3indenver » Tue May 06, 2008 7:56 pm

Hi there,
I am not new to ASAP. This message board has been a HUGE help to my family as we have traveled the road of chiari with syringomyelia. Quick history. My son was diagnosed at 20 months old with syrinx first then chiari, found syrinx due to chronic complaints of "back hurts". He has been decompressed twice (first time used synthetic patch). also following second decompression 10 days post op he had a serious CSF leak, had to have emergent surgery and lumbar drain x5days. since then he has been doing well. The last surgery was two years ago february. Through all of this his syrinx (c3-t10) has never shrunk. At our last nsg appt (11/07) he said it appeared "fuller" but wanted to wait to do another mri and watch for symptoms, his chiari area looked good on these films.
Ok, here's where we are at. Over the past few months he has started having headaches. ALmost alaways in the morning. It is a struggle to to get him to school. After s little while he starts to feel better. These headaches also cause him to feel nauseous. I called the nsg as they had become an almost daily occurence. He said these complaints are text book for high pressure headaches and high pressure could explain why the syrinx has never improved. My question, are here any other symptoms of high pressure. I took him to the opthamologist, eyes looked good. We are scheduled to have a pressure monitoring test done next friday which includes a trip to the OR to insert a fiber optic monitor in to the skull to monitor pressure for 24-48 hours. Needless to say, I am nervous. Has anyone done this test before? was it painful? Also he has started to complain of his neck hurting. Any thoughts, opinions etc would be extremely helpful. This board has been such a great asset.
thanks
Melissa
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Re: 5 yr old possible pseudo tumor cerebri

Postby Sara » Wed May 07, 2008 7:48 am

Hi Melissa,
Both of my twins have pseudotumor. They were dx at age 6. They have both have continuous ICP monitoring done on numerous occasions. It is not that bad at all. It is a tiny incision and they only took tylenol for the discomfort. At our hosptial, the ICP monitors are portable and they allow the kids to go to the playroom, and walk around the hosptial as much as they like to get a normal pressure in their daily life.

However, in some hospitals they confine you to ICU and to bed. If this is the case then I urge you to make sure he sits up and lays down flat- just like he would at home. Often times we sleep in a hospital bed at a 90 degree incline, and that is not the way you sleep at home. Pressure builds while lying flat.

I am glad their is no papilledema. That is good news. If you have any questions, let me know. As I said, my twins- now 13 were dx at age 6. One is shunt dependent, the other responded to medications.

Sara
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Re: 5 yr old possible pseudo tumor cerebri

Postby momof3indenver » Wed May 07, 2008 8:34 am

Hi Sara
Thanks so much for your reply. I am assuming the monitor is not portable as our nsg said he would be in ICU, but that he would be able to get out of bed to sit in the chair! whoopie right!! Did they have to shave alot of hair? I know a vain question but my son deals with questions alot from kids at school already from the decompression scar. How long is the monitoring usually done for? Do you know what is considered normal/high etc? How did they take the monitor out? I understand it is put it in the OR. Do you think if he is diagnosed with high pressure they will opt to do the shunt right away? Our nsg as already told me medication would not be the route for my son due to all he has gone through already, with the syrinx not smaller etc....
thanks for your help
Melissa
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Re: 5 yr old possible pseudo tumor cerebri

Postby Sara » Wed May 07, 2008 1:07 pm

The incision is just 1/4 inch, so only a tiny dot of hair was removed by our surgeon, but they also only shave the minumum for the decompression also. No once could tell they had surgery because their hair covered it.

They would give my daughters a shot of valium to relax them and simply pull it out with a 1-2-3 to remove it. The length of time they do the monitoring depends on what they are finding. Our daughter has the monitoring done when they suspect shunt placement, sometimes she goes back to the OR a few hours later when the pressure is in the 400's, other times she has had long term monitoring for a few days to make sure we are getting an accurate picture.

If the pressure is really high right away- say over 200 or 20 then all day then they will diagnose high pressure. But sometimes it can be trickier if the pressure is normal half the time and high or borderline the rest of the time. Normal pressure in a young child is anywhere from 0-10 or 0-100 (depending if they use mm or cm) Borderline pressures are between 10-20. Anything over 20 or 200 is considered high. Some people only have high pressure while sleeping- hence the headaches when they wake up in the morning.

If he said he would not try medication, then most likely he will place the shunt and remove the monitor at the same time. Is he going VP or LP? Our daughter originally had an LP shunt but she developed an acquired Chiari from it, so now has a VP. For a few years she had what is called a cisternal shunt, in her neck, but that was removed when she had a cranial expansion last summer and a VP put in.

Let me know if you have any more Q's
Sara
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Re: 5 yr old possible pseudo tumor cerebri

Postby momof3indenver » Sun May 18, 2008 5:27 pm

Hi Sara.

Aidan had his ICp monitoring done. We just got home from the hospital today. It was put in friday morning. After 24 hours he had lots of flucuations in his numbers...but there were many occassions, especially while lying flat sleeping that he ranged from 20-27
His nsg came in saturday am and said he wanted to monitor him for 24 more hours and also do an mri of the brain and an mrv (for the viens of the brain). We did 24 hours more. However, the second night, his numbers mostly sat in the high teens. did occassionally hit the low 20's but not for any real length of time. (a minute or so then it would come down to 15 or so...
anyway, my question for you is, did your daughter's numbers differ night to night? He is thinking of a VP shunt. but wants to review the mri's from today and then will call us this week.
Any thoughts on all of this. We are just so confused.
Thanks again
Melissa
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Re: 5 yr old possible pseudo tumor cerebri

Postby lovemyblessings » Sat May 24, 2008 12:57 am

I'm late coming into this, but my 18 month old had the ICP monitoring last month. Her laying flat pressures were high 20's to mid-30's. She'll most likely be getting a shunt in a little over a week. She's the second of my three Chiari kids to develop this after decompression. I don't get to ASAP often, but if you want to talk more, you can e-mail me with my username here at hot mail.
~Dawn~
Blessed Mommy to six amazing blessings here with us
John 10, Marah 8½, Keegan 7½, Luke 5½, Quintin 4½, and Ruth 3
Caleb Logan expected in August and
And three blessings waiting in Glory, including Selah Marie born @ 17 weeks 4/15/2009
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Re: 5 yr old possible pseudo tumor cerebri

Postby Sara » Sat May 24, 2008 8:19 am

Hi Melissa,

Yes, the numbers can fluctuate. Often times we do ICP monitoring for several days to get a good picture of what's going on. The high teens is still a little high for a 5 year old. The MRV is to rule out any blood clots. Blood clots are a major cause of raised ICP, but in these chiari patients it is not usually found. But the test still shoud be done to make sure.

Was your son symptomatic when his pressure was in the teens? It is a hard call when the pressure is not clearly high all the time. What was the pressure in the day? Was it high when he was up and about? A shunt is not an easy decision to make, my daughter has had numerous shunt revisions, and repeated surgeries is not a pleasant life. Did they try diamox? usually they try medical treatments to see if the condition will resolve. I have twins, one responded to the meds and one needed the shunt. Does your son have papilledema (swollen optic nerves) these other findings might help make a decision as to if a shunt is necessary. Please email me at sarap@cfl.rr.com if you have any more questions, I sometimes miss posts to the board.
Sara
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