16 yr. old son with cm

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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16 yr. old son with cm

Postby jmarie1210 » Mon Dec 07, 2009 7:22 pm

Hi,

I just found your board while looking for answers for our son. He had decompression surgery 14 yrs ago and basically has been fine until this last year when he developed the pressure HA's and extreme abdominal cramping sometimes with his headaches and sometimes without. He had an MRI back in May but the NS doesn't think there's any CSF blockage. But, he does have a small cyst on the top of brain called a colloid cyst. The NS isn't worried about it either. The NS thinks he may just have migraines. I can't help but think that he's having problems with his CM again. My son is 16 yrs. old and knows what the pressure feels like verses a migraine. He even gets pressure in his left ear. Does this sound familiar to anyone? Abdominal pain, pressure in the base of his skull and extreme fatigue after the HA subsides?

Thanks for reading and I appreciate any responses,
Julie
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Re: 16 yr. old son with cm

Postby youngwife » Mon Dec 07, 2009 10:13 pm

Hey, Julie! :D

I can understand why you would be concerned. After living with this condition for so many years, and being 16 years of age now, I would also think that your son is capable of knowing what is pressure and what is not. My 15 year old and 12 year old daughters can both definitely tell the difference.

If this were our situation, I would probably seek out a few more opinions. Either by emailing or mailing a cd of the MRI, or by actual visits. But, I think opinions and approaches can vary so much, it would be helpful to see another point of view.

I just want to encourage you to listen to our son and your mother's intuition. It's very valuable information! :)

Blessings,

Rebecca
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Re: 16 yr. old son with cm

Postby lcolangelo » Tue Dec 08, 2009 9:01 am

Did they do a mri with cine flow study? Sometimes they can't tell if there is a blockage without looking at a flow study-- hope he's feeling better.
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Re: 16 yr. old son with cm

Postby jmarie1210 » Tue Dec 08, 2009 4:27 pm

Oh, thank you for your responses! They did do a cine flow on the mri but I'm still not convinced. He had a pressure HA last night and this morning it wasn't as strong but it was there. He came home from school today and said that the HA never really eleviated and steadily is getting stronger. His pediatrician wants to try Imitrex on him to see if he is indeed having migraines so I just filled the script and he just took one. I just don't think it's going to be the answer. Meanwhile, I'm going to call the NS back and have him re-evaluate my son with the diary we've kept too. Hopefully that will help. I just can't help but think it's not quite right that he would have a CM, this colloid cyst AND migraines. It's doesn't make sense. I'll post more as I know it.

Thank you so much for your support! It's so nice to find others who understand.
Julie
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Re: 16 yr. old son with cm

Postby lttutrow » Tue Dec 08, 2009 6:31 pm

I agree with you, I think often they use "Migraines" to mean "we know they are having headaches and don't have a better explanation and the description sounds like Migraine, so let's say Migraine". It's always been interesting to me that the same pain description that was attributed to the CM before surgery is now Migraine.
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Re: 16 yr. old son with cm

Postby youngwife » Tue Dec 08, 2009 8:08 pm

I *think* it's possible that Chiarians can have migraines in addition to Chiari or pressure headaches....BUT to just assume it's migraines is unrealistic, really. It would be nice and tidy if a migraine pill were the answer everyone was looking for, but that sounds "pie-in-the-sky" to me.

Now, trying a migraine med may not hurt, you just never know what help it could give...the last neurosurgeon that Rachael saw said he thought that Chiari headaches can trigger or have a component of migraines. :| But, further evaluation is essential before writing these headaches off! It really disturbs me how neurosurgeons seem to assume that once you've been decompressed, you should be fine.

Plus, CINE MRI's are just a snip-it of what is going on at *that* moment in time. He could be having fluid collections and pressure spikes that weren't seen on the CINE. Again, the test is being treated, rather than the patient! :idea:

However, if you are going to continue to see this particular NS, you'll probably HAVE to jump through these "migraine hoops" to be taken seriously. :roll: And, we have sooo btdt, and fully understand that frustration. :x

Hang in there, though! You are a good mom for believing and listening to your son. He's blessed with a great advocate in you.

I truly hope that something will help him very soon!

Right there with ya,

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: 16 yr. old son with cm

Postby jmarie1210 » Wed Dec 09, 2009 8:22 am

It's so nice to read this support because you feel like you don't know what you're talking about when you talk with these Dr's.

I gave Nathan the Imitrex and within 20 minutes he was having such burning and increased pressure in his neck and base of his skull that I had to call the Pediatrician who gave him the Imitrex because it really worried me. She wanted me to take him to Children's ER if the pressure increased. It actually subsided 1 1/2 hrs after taking it but the pressure HA was still there, just not as bad as the Imitrex made it. Now, she's sending him to a Neurologist before the NS. So I guess we're going through the migraine hoops that Youngwife spoke of. Meanwhile, we go through the HA's over and over again. This is SO FRUSTRATING!! :evil: Nathan had decompression when he was 2 yrs. old and he's now 16 and he's 6'4". He's grown tremendously in the last year (that's when the HA's came back) and no one seems to think this could have anything to do with it. Maybe not but I'm really searching EVERY possibility.

Youngwife, did any migraine medication help your daughter? How old is she and did she have the decompression surgery?
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Re: 16 yr. old son with cm

Postby PDoe » Wed Dec 09, 2009 12:49 pm

Hey,

Just my 2 cents. I'm thinking the growth spurt hassomething to do with this. I don't know, but is it possible that the PFD they did when he was 2 is no longer woking becuas ehis skull grew? Or, if he gained a lot og height, could that pull on his spinal cord causing problems? I realize everbody goes through growth spurts, but for kids with CM I'm thinking it maybe a little different.
Considering that's when the problems started agian......
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Re: 16 yr. old son with cm

Postby lttutrow » Wed Dec 09, 2009 1:49 pm

For my 11 y.o., the only med that is making any improvement is Inderal, and it isn't stopping the pain but improves the aura that goes with some of them. Have you asked your nsg. about Imitrex? I only ask because our Neurologist had ordered it for my son when a headache began, but when we saw the nsg., she wanted him off of it.
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Re: 16 yr. old son with cm

Postby jmarie1210 » Wed Dec 09, 2009 3:50 pm

Yes, the problems started when Nathan really got taller. He's thin so weight may not be a factor but the surgery was 14 yrs. ago and I'm not sure what effect that has on the chiari. They don't believe the bone grew back but something doesn't add up.

The pediatrician gave us the Imitrex because the NS thought Nathan was having migraines so she thought trying to treat them may be an answer. My thing is, I'm worried about covering up the pain from blocked CSF if that's what it is instead of treating what's causing it. I'm going to ask a bunch of questions until someone answers and I'll post it all on here in hopes of helping someone else. It's nuts that we have to do so much research and KNOW what to ask because the dr's don't LISTEN. It's frightening actually, :shock:
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Re: 16 yr. old son with cm

Postby Sarah in Paradise » Thu Dec 10, 2009 10:19 am

It may be helpful to know that some acm specialist neurosurgeons are looking AT growth issues / with acm = and aware= finding in the early research /that growth of the container ( bone ) is NOT always in good form in timing with growth impacts to the contents ( soft tissue ) = but that it will perhaps equalise to good fit with time /further growth too. They are in SOME cases encourging parents /patients to hang tough and see if things to end up equaling out in space /contents vs container approach .

One peds neurosurgeon intrested in this issue =is at UCLA , ( doing some research ) -- I believe thought memory is shaky =can't remember who posted about it = but Dr Frim in Chicago is another with intrest in this if I DO remember right = LOL .

Regardless Dr Lasserff at UCLA's newer research on this may be of intrest to you --

there is also a trend /belief that those migraine meds may be helpful to some = often they are tried /and if fail to help = it can help "ruleout " migraines ==and in reality some with acm have both too .

I KNOw IT'S FRUSTRATING = my empathy == I'd consider getting him to a full time acm speclist Now ( ONE WHO DOES THOSE FAILED ACM EVALS ) and there are JUSt A FEW OF THEM .

it's not necessarily "an acm surgery failure ) - could well be teathered cord issues with the big growth spurt stretching the cord for example /but it's my humble opinion = when someone does have this pattern of impacts = they are the physcians BEST able to sort out what's best to consider now too .

Best wishes == Sarah in Paradise ( acm /with decompresion done 12 years ago = GREAT outcome in reducing the most troublesome symptoms , but more surgery urged now too= holding out as LONG as possible , in part because of having mutple sclerosis as well = eds underlying both developing = a "complex " case at best = LOL . Retired nurse getting very far behind in newer nursing knowledge too =but still kicking hard at 56 ! ( acm known /followed since I was in early 40's in reality -= so much progress in that time in the neurosurgical grasp too !
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Re: 16 yr. old son with cm

Postby youngwife » Thu Dec 10, 2009 11:19 pm

Rachael has not found the migraine medication to be helpful at all. I wish it was, though.

Rachael was great for about 4 months after her decompression. The surgery didn't fail. Unfortunately, we are afraid that the undiagnosed connective tissue disorder (very likely EDS) has caused her continued problems.

I pray that your son is able to get relief from his pain very soon!

Rebecca
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Re: 16 yr. old son with cm

Postby jmarie1210 » Fri Dec 11, 2009 9:25 am

So much information..... I can't thank you guys enough. Everyone here is so awsome, God bless you!

We will look into someone who specializes in acm. We are in central Ohio and Dr. Edward Kosnik at Nationwide Children's Hospital in Columbus did Nathan's surgery and one of his collegues evaluated him with his recent appt. and ordered the MRI. I'm checking into a 2nd opinion now. Nathan has a cyst on the top of his brain that he didn't seem to have 14 yrs. ago. That complicates things a bit.

Thank you!
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Re: 16 yr. old son with cm

Postby youngwife » Fri Dec 11, 2009 9:29 am

I'm sorry I forgot to mention that Rachael is 15. She had her surgery when she was 13.
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