....back again...the search continues

[sherimom]

Just saying "hi" to everyone. My son, now 22, still having problems after his decompression 6 years ago.  Sometimes it's better, sometimes worse and it's been getting worse again. He's having an MRI on morning of 8-24, then sees Dr. Iskandar same day, after the MRI. I love that man - and the clinic - it's about a 2 1/2 hour drive and they always try to schedule things same day for us. Over the years have tried many conservative measures, and I suspect we're getting closer to another surgery. We'll see.

So I just thought I'd pop in again.
Blessings,
Sherri

[selmaS]

  A tilt table test is done to rule out POTS.

No worries let me know if elevating the bed helps him....and what the Dr has to say.

[sherimom]

Thanks Selma, prayers are always appreciated.
No, no tilt table test that I recall. What would that be used to check for? I plan to ask the dr about all of other items, like ICP, syrinx etc...
I will see what I can do with the incline too, thanks for the info :)

[selmaS]

  Even if they tested him yrs ago, he should be tested again since he is having symptoms.....

Did they do a tilt table test?

  If his bed will allow it put something under the head board to tilt the bed so the incline works for him....pillows may help some but I always slide off them and do not get the benefits of an inclined bed......as it works well for reflux too as well as pressure HA's.

Tell him to hang on and I am sending prayers the symptoms slow down....

[sherimom]

Yeah, I just got him a few new pillows to see if it will help.
I think they checked the ICP back when his symptoms first started back after the surgery. I know the place that did it didn't have him lay down long enough. He was SO sick, ended up in the hospital for three days because of it.

Just talked to him again and the list is growing, quicker than I'd like. May call the dr back if he's not doing better by tomorrow. See what they say. Now problems with his legs too, tingling, numb and weakness. I know it'll be okay, just trying to hold on til Monday.

[selmaS]

  Hmmm have they looked at ICP?

Or POTS...but he should try to lay in bed with the head of the bed elevated...see if it helps...some have more pressure when laying flat...and keeping elevated may help him sleep thru the night.

[sherimom]

Oh, and I forgot to add, he's got that vision thing again, where he sees a bright white light, it obscures his vision completely for a minute, like a sheet in front of him.  Previously, at other emergency rooms, they try to attribute to migraines, but it's completely different.

[sherimom]

Hi Selma,
So glad to hear you're doing well!  He has continued to lift weights, with modifications approved by the doctor.  That's not new, and he started working full time again. It just comes and goes, but his chiari headaches have been increasing in frequency, generally would get them once every month or two, and not terrible. But in last 3 to 4 weeks, has increased to 3 or 4 times a week, with maybe a very severe one once every couple weeks. Also neuro symptoms again, pins and needles in his hands. When he gets the headaches, they wake him from sleep, he has to get out of bed and stand up for a quite awhile for them to go away. And, before his last surgery, tethered cord ruled out, full spine MRI.  No signs of ED either.

They're doing Cspine MRI, because he has stenosis in lower spine, checking for that now from what he said.
Thanks for your prayers :)

[selmaS]

  Hi and welcome Back....sorry tho..as it means things are not well...

Did they rule out ALL related conditions on your son b4 his surgery?

Glad to hear he will be getting a MRI soon and hopefully answers to what is going on.....

May I ask what his activities have been when he seemed to feel worse....is it something traceable in that regard....that he may have been more active...??or something he hasn't done in a while?

I am 6 yrs post op as well and I am doing very well ....I do have my moments if I over do it....but I am older then  your son....so that is not mean he will have the same issues...and I do have other related conditions that are causing my symptoms too....

Praying for you and your son <3