Todays MRI-Huge syrinx

[Barb]

Not sure how much I have said about the fact that C all of a sudden had a noticeable weakness in his legs last week and headaches and such got much worse. We went to the NS who sent us for an MRI today. The MRI showed a HUGE syrinx about 10 vert. long in the T's. The ventricles were non existent. So, we thought we may be looking at a temporal decompression but that clearly is not the case now. C has always had the syrinx (actually lots of walled off ones running from the C's-S's but this one is really long and wide.

I will keep you updated. Such fun!

[Michelle]

Barb,
What is syrinx? So much of this stuff is so new to me & I'm just trying to learn all I can.
Thanks!
Michelle

[Barb]

No problem. In short, it is a pocket of fluid in the spinal column.

[Spokie]

When will you know exactly what's going on?
Good luck, and let us know, please!!!!

[Barb]

I dropped the MRI's off late yesterday so I would think in the next few days. I dont think there is any question that they will want to drain it. This would be the third time the area has been drained off. It doesn't seem to do any long term good. Has anyone had a good resolution to this sort of problem? I have heard of shunting a syrinx, are there other options?

[Barb]

We go in the AM to see that NS. The report shows the syrinx from the brain down to the S's....SHEESH! It is 1 cm wide at the widest points. I can't imagine we will be walking out of there without a surgery date. No wonder the weakness is progressively getting worse. :mad:

[mommy2cnj]

Unfortunately, this helps you absolutely nonya, but I do have to say, I've often times wondered which hospital stays are better - the ones you're forewarned about or the ones that take you completely off guard......I vote for neither!! (Actually I have pros & cons for either/or so therefore, I'll still stick with neither!! ;))

We'll definitely be here for you if/when you should need us! We'll be thinking of you all, as well! Hugsssssssss

[Spokie]

Good luck! Please let us know.

[Barb]

As always, we got the general shock value that C commands at these things. All were surprised to see a syrinx this large balloon up so quickly inside the cord. As of now the plan is to shunt the syrinx at T9 and hope that they it is not a pocket of walled off syrinxs. C is having another MRI right now to see if the Chiari (that was decompressed at 3) could be causing the syringomyelia. If this is the case, the plan will change as we may have to re-decompress the Chiari. I SOOO do not want to go that route. In either case, we are in for surgery Thursday morning and since our NS does the 72 flat thing, we won't be out until Sunday at the earliest. I will write more closer to Thursday.

[mommy2cnj]

Again, know that we're thinking of you! You have many pulling for you! Hugssssssssss to you and yours!!

[Spokie]

Again, know that we're thinking of you! You have many pulling for you! Hugssssssssss to you and yours!!

Very true!

We're all here for you! Let us know how it goes.

[Barb]

Thanks!!! Still haven't heard if we are changing the plan to shunt at T9 or be more agressive. Just trying to get the grocery shopping and laundry done so that is over with. :) Hopefully I will have wireless access in the hospital. If not I will call Holly and ask her to update here for me.

[Holly]

I didn't get a chance to talk to you yesterday but I hope that all goes well today! I will keep updates coming if she can't get on and gives me any :)

[Holly]

I received an update!

"C has been home for about an hour now. He is on the 'sick bed' with a
bunch of bears and remotes. He is looking great and feeling good. I think it
will just be a few days until he is fully up and about. As we drove away
from the hospital he yelled out the car window, "See ya later suckers!" This
vocabulary is certainly funny if nothing else...."

THANK YOU to everyone for all the offers of help, emails and well wishes.

[Spokie]

Glad to hear he's home. Hope everything went well. Our wishes for a speedy recovery!
Loads & loads of hugs!

They never lose their sense of humour, do they...

[Barb]

It is so nice to be home. You are going to crack up when I post my new hospital pet peeve, so go read that thread here. (http://spinabifidaconnection.com/showthread.php?t=75)

His leg strength has greatly improved. Even right after surgery he had much more strength and function than prior to. My hope is that in the next few weeks we may see him walking a bit more. There is a shunt placed in T9. Right now he is enjoying the special attention, getting to control the family TV and use my laptop.

Thanks for all your well wishes!

[Holly]

I am glad that he is home. Relaxing at home is just so much better than "relaxing" in a hospital.

[Barb]

C has been home a week now and all is better. Meaning, he is off the pain meds (even motrin) and has returned to normal life. His legs are noticeably stronger and we just had a storm blow through that did not give him any headaches :) Maybe this is the answer (at least for the near future). Thanks so much for all the well wishes!

[kali]

Oh barb!!!! I dont know how I missed this one, this is the first time I have read about c!!!! I am sorry I am so late to send you a hug! but I am very thankful C is doing well! hugggssssssss hugggggggsssssssss

[mommy2cnj]

I am so glad to hear all is going well. I hope that was the key C needed, and continues to progress as well as has been. I'm utterly amazed at how quick these kiddos bounce back....truly a blessing!