Had appointment with Ped Neuro Surgeon today...

[CC]

The docs have been concerned that Chris may have a tethered (sp?) spinal cord and we have gone from doc to doc and test after test. Today we went to the man who would know if this needs to be pursued or if they are just sending us on a goose chase. Spent almost 2 hours with the guy, he went over everything and even pulled up Christopher's most recent cat scan on his puter and showed me some things that go along with why they feel he may have the tethered cord. The only real way to tell is to have an MRI but being Chris has a pace maker he can't have a MRI. Christopher's heart Doc has looked into the MRI with a pace maker issue and although it is highly recommended NOT to have... In a case where it is absolutely necessary it could be done but with risks He also said he would never agree for Chris to be put through this unless absolutely 100% necessary. The surgeon today after looking at his cat scan and going over his issues and believe it or not being where that fatty tissue thing he has because of the area its in could also be another sign of the TSC. Along with the bladder kidney issues believe it or not So the surgeon is going to call the heart Doc and they will put their heads together and figure how we can do this with little to no harm to Chris. He did say they could do exploratory surgery which he would rather not do or there is another procedure that is very invasive that comes with many ricks too So we will find out Monday what these 2 Docs have come up with, if we will go for the MRI or not.

Christopher has been dealing with the same heart Doc since he was just a few days old right up till now 17 years later. I truly trust him and trust he would never have Chris do anything unless it was truly needed.

Depending on what the MRI shows if we go that route will then determine if he will need spinal surgery I don't want to look that far ahead yet but the Doc did say if he has the TSC there is no question he will have to have surgery.

I know it could be worse but honestly tonight I say STOP this sucks and can't my guy have a year without Docs, tests, surgery... He has has way more then his share over the years and Bless him he never complains about it.

Other then that he is doing MARVELOUS. We just had his IEP which was a breeze. He will start his 6 week extended school program in June and he was just accepted to the week sleep over camp the week he is free this summer

Chris is in the bell choir and will performing at his school's graduation next week Honestly not just cause I am Christopher's Mom but OMG the bell choir they have are truly AWESOME and I am truly amazed each time I see him perform ;D

For any that read this far

As always thanks for letting me ramble here

CC~

[Debi]

Aww CC.. I'm with you.. Chris has had toooooooooo many drs aand surgeries and this does look most difficult to decide. I think I would have a very hard time with the MRI /pacemaker issue.
I'm just glad that your Doc is one you trust so much!!
It is great to hear about his ESY and his bell choir.. something to very much look forward too! Just hope he can get his health issues straightened out as quickly and (least stressful ) as possible!!

[Pat]

(((Hugs))) Wow! What next? Does it ever stop??
Great to hear about the bell choir. Sounds like fun. Does he do it with the school??
My thought about camp... well, you know my runner, so great for Christopher. Mine doesn't seem to be improving like yours. What's the secret?? lol
What's Kodi doing this summer?
Pat-Pat, mom to John-John

[CC]

Thanks Debi and Pat-Pat. Honestly Colin and I are very stressed over all this. Seems no matter which way we go the risks to Chris are not good yet if he has the tethered cord the risks of doing absolutely nothing are not good either Colin and I truly don't know what to do here and the whole thing just SUCKS.

Pat ~ the bell choir is a program run through his school and they perform outside the school too. Truly is very cool to see them perform. I was shocked to be honest that Chris was picked to be part of the program and truly amazed at how well he does ;D

Kodi is home for summer break but working to make money as she and some friends want to travel to Ireland on their spring break. She has been to London and Germany but is really wanting to go to Ireland in her senior year. She just loves to travel so now is the time cause once she graduates life kicks in, LOL

Interesting thou she is majoring in theater her LOVE since she was 3 but has taken sign language the last few years and is quite good with it I must say and she really loves it too. So who knows where that might take her

Any who thanks gals, I truly am stressed over this stuff with Chris and honestly not sure which is the right way to go

HUGS

CC ~

[Emilysmom]

Goodness, CC...........no wonder you and Colin are stressed! Very hard choices to make, and as always they come with such risks! I'm sorry Chris has to go through anything else. I remember thinking after his heart surgery that NOW he would be OK. I know that has to be hard on you and your whole family. You have made wise choices on his behalf in the past, and I know this will be no different. The bell choir does sound like a wonderful opportunity for him!
Thinking of you,
Susan

[CC]

THANKS Susan, Yes we too thought after the heart stuff YEA Chris will be fine. Never thought when they put in the pacemaker that he would need a MRI

Spoke with them all today and it has been decided that the MRI is needed and will be scheduled They tell me the scheduling is 6 to 8 weeks out so I have no date yet. It will all be done in Columbia in NY City and they will put Chris out for the MRI as he would never agree to stay still. They have to schedule it so that the MRI people and the Heart people can all be there to work on this together.

One of the risks is that the MRI will blow out the pace maker and he will need a new one, or that the wires get to hot and burn his heart There are other risks but his heart Doc whom Colin and I LOVE said after talking to the Neuro Surgeon this just has to be done.

Honestly I wish I could say I was tough and I am not worried but I am a wreck over this

When I know the date I will let you know, cause I will be asking for prayers for my guy that day for sure.

CC ~

[Ericsmomma]

CC,
My thoughts and prayers are with all of you...please keep us posted.

[Googsmom aka Jennifer]

Oh CC, all my {{{{HUGS}}}} and Prayers!!!