getting really worried

[sherimom]

Hi all
I'm trying really hard to not jump ahead of things, but my son's symptoms are really getting worse. Last week, I tried to get him into specialist at UIC but the current MRI films without contrast, show nothing. They did a lower spine xray to check for fractures and that was fine. Now we need a lumber MRI and are waiting for that so we can see about getting into UIC.

Things are getting worse quickly. The flashes of light from before surgery have returned and he is getting those pretty much daily (he sees a very bright light which totally obscures his vision for 2 ro 3 seconds) he had one where he felt his vision was blurry after and he stumbled. THe head pain is the worst - tongiht he has me worried, I gave him rx meds for pain, but it was bad. He said it was like a brick wall was pushing into his temple and sometimes his jaw.  
His back pain is now into upper back again.

I have considered that this may have to do with CSF pressure or something. He has never had this checked.

I also have heard of cine MRI on here, but really don't know what that is - looks like maybe to check flow? I don't believe he ever had that test either.

I'm pretty much venting here tonight.  I have to hold it together in front of him, but I just want to cry. I want to curl up in a ball and just sob.  This is so hard for me to watch. I also lost my mother about 3 years ago due to a brain anuerysm. She survived the intial bleed and was flighted to Chicago. She had the best treatment and doctors, but because of a weird anomaly with her veins in her brain, she didn't make it. She stayed 3 weeks in ICU with top notch care, but didn't make it. My son and I both had MRI to check for anuerysms and "weird veins" (they were bifurcated, or split, and too small) and we are fine in that regard.

So, I try not to think about it, but it does rear up at times.  I just get so so scared. And I can't let him see. I've asked him if he feels scared, and he is just pissed that it hurts and is interfering in his life. He had surgery in January 09, and this time last year, we were going through this.  I feel so angry that he has to go through this. I know he is not the only one, and that compared to some people's symptoms, his are probably less severe. But still it's hard.

Thanks all for listening and I'm grateful to have a place to vent when I need.  

[selmaS]

HI Sherri....well NS do not dx either....so they really do not want to see u unless u have a new dx.....which can be diff since finding a experienced NL in chiari is diff too.

And u r so right it could be something not related to chiari or the surgery....but, it should be checked to be sure especially since u say the symptoms r the same.

I hope u get some news and that ur DS's HA's stay away for a bit too.

Keep us posted
"selma"

[sherimom]

Thanks all!

Well, we went to the family doc, who I love. He always listens and if he doesn't know he says it and consults with someone who does.
So I asked about CSF flow pressure - he ordered a lumbar puncture and got him in the same day, this afternoon. It went well and pressure is in the high normal range. That's a relief.  They will send it off for other tests as well.  It's interesting though, that he does NOT have a headache tonight...not just from the test, but also because he has one nearly every night.  

He is going to send us to a neurologist to start again to look for other possible problems.
( Re surgery:  it was decompression surgery, widened the base, opened dura, dura graft - bovine, titanium mesh support plate, shrunk the tonsils which were herniated at 20 mm at time of surgery - Dr. H did the surgery, we saw him and essentially he does not feel this is related to chiari although sx are the same as pre surgery)

He has not had a cine MRI (I am not sure what exactly that is) and is scheduled for lumbar MRI on Friday.  We discussed his vision, he will get that checked as well, but is not clear on what he will be checking. I think he wants to do that with neuro. I feel like we are starting at square one again.

I thought about it today and I guess that if the specialist that did the surgery feels it is not chiari, I suppose it is possible that it could be something simpler and that should be checked out too.  Just because he had brain surgery doesn't mean it's necessarily that, although one would THINK so. Hell, I'm just his mother....not a doctor (sarcasm intended)

But Dr. C acknowledged that NS aren't much on being "warm and fuzzy" and maybe that's why they do what they do......I'm grateful that we are blessed with a wonderful family doc. ?At least he listens and takes it seriously. And I am fortunate in that regard. At least I feel some action has been taken. As for Chicago, they want the lumbar MRI before they will make the appointment. So I will have them forward to him as well as Dr. C and see what happens next.

Thanks for listening.
Sherri

[selmaS]

HI Sheri,

I have to agree with NATAIYT.....that it could be TC and a CINE MRI is a good idea, which I believe u may have mentioned about getting.

Knowing exactly what was done is also helpful...did he have a full PFD or a bony decompression...what kind of patch...and could it be scar tissue....sometimes the surgery fails for what ever reason and it may need to be redone...this is not uncommon.

Not all NS r quick to agree that a redo of something they did is needed.

So sorry u an dur son r going this all over again.

Please keep us posted...and vent all u need to here, that is y this place is here : )

"selma"

[not_all_tonsils_are_in_your_throat]

I am also a Chicago area "mom" worried when the symptoms of my daughter get so bad she can't even sleep!  Was his first surgery done at UIC?  Do you know what they did/  I would go back there and insist they re-look at his condition, he may have tethered cord, and the surgery may have been too conservative.  Some DRS take out just a wee bit of bone, and the crowding continues.  He could also have scar tirrsue from the first surgery.  The CINE MRI is a good tool to show the DRS what is happening.  Best of luck (especially at the holidays!)

[n40066]

hi sheri
i feel your pain..there is none worse than seeing our child in pain and being helpless to remove the pain from them.  it is a horrible feeling!!  i'm so very sorry for both of you.  what surgery did he have in jan.  i've been out for a bit, so am behind the times a little, as i had surgery on 11/23/09.