waiting and waiting.....

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

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waiting and waiting.....

Postby wondermatx » Thu Feb 18, 2010 12:53 am

It's been 6 months since my little guys 3rd untethering/and possible 2nd decompression was cancelled due to the fact the his cervical spine looked unstable...The thought made me cringe not again, my daughter had a decompression and cranial/cervical fusion. she was 2 and in a halo, she didn't do well with it, infection after infection, they removed the halo after 5mos, and then it took almost 3years to fuse the way the drs wanted..she still has neck pain/and spasms. That was a posterior fusion. My son is looking at a trans-oral fusion????!!! very dangereous procedure..mark has a bleeding disorder and noonan syndrome on top of it, we are waiting for dr. menenzes to get back with our NS here in Houston. I just got a call from our ns office, well, the dr. has another patient he needs to talk to dr. M about and then he will mention Mark, why he couldn't do this 6mos ago??? why did not pick up the phone and say hey, i have this patient...If our NS didn't think that it was urgent then why couldn't we have mark's cord untethered, and his chiari taken care of..we get little sleep, headaches, leg pain, knee pain, just feeling like crap, now we are dealing with anxiety, attention issues, he is 7!!! sorry just venting...
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Re: waiting and waiting.....

Postby lttutrow » Thu Feb 18, 2010 1:06 am

I don't have any advice, but sending ((HUGS))!!! I vent too, and this is a safe place for it. I hope he gets relief soon!
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Re: waiting and waiting.....

Postby wondermatx » Fri Feb 19, 2010 11:11 am

thank you for the hug! really needed it!
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Re: waiting and waiting.....

Postby Dakota's Mom » Fri Feb 19, 2010 1:20 pm

Argh...so sorry! Sending {{{hugs}}}, too! I really hope you hear something soon!
Mom to Dakota (11)--Neurofibromatosis, SM (C2-T8), Left Thoracic Scoliosis, Seizure Disorder, Autism with Cognitive Impairment, Osteoporosis, Hypothyroidism, Untethering surgery 5/08
and Joshua (8)--happy, healthy, and supportive brother
Dakota's Mom
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Location: Omaha, NE

Re: waiting and waiting.....

Postby memom » Fri Feb 19, 2010 7:55 pm

I want you to know I am thinking of you and your family. I know how hard it is to remain strong hour after hour, day by day. Sometimes it all catches up to you and we just have to "have a moment" as I have begun to call it. Have a moment or two...then continue searching for the best solution for your family. I wish you much peace.

Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: waiting and waiting.....

Postby Sarah in Paradise » Tue Feb 23, 2010 2:43 pm


Gosh , I wanted to add another gentle hug mom == that waiting and waiting is the worst aspect in my mind /heart =all the time wondering if we are not pushing hard enough / time is a factor we HOPE we arn't blowing in trying to find our way forward .

My first immediate thoughts were =are thank gosh this neurosurgeon IS getting insight from Dr Menezes on the transoral need /approach in his case ... it's my opinion he's the main /only neurosurgeon I'd be comfortable with given the complexity of this surgery .

I do want to add = just a tidbit for thought /discussion with Dr Menenzes too = the recent news report of a first time /first attempt to address odontoid issues = through micro incision and minimually invasive surgery . I saw a news report , and posted a link here at asap ( main board ) within the last couple weeks = thinking GOSH what an advance it could well be = for many of us with the marginal OD tilt /issues = where it's very clear in daily activities and efforts this IS causing signifigant problems with all sorts of impacts like bigger disautomic disfuntions ( in me ) = yet the surgery is sooo sooo big /huge to face =recover from , and like many with this tilted odontoid bone entiwned = ehlers danlos syndrome is going to make that more difficult even at "best " . I end up agreeing with a couple of the neurosurgeons , at MY age , and my combo of health problems = this isn't a good route to consider at all really ( the transoral surgery - NOT that all the speciaists have urged me to consider it either = there isn't real agreement I've gathered /when you bring such things as EDS and aging factors into that mix .

It does bring me to real hope though = that this advance IS going to offer better ave's to some , and to some younger than I ect . ==and while I"d guess it's far to soon after that first surgery done / = the early outcome has been really good ...

The other aspect I can add here = is I have known a few of Dr Menezes patients who needed the fuller transoral approach taken in decompresion plus == and reality is each HAS done pretty well overall ( each I've gotten to know via asap ect is an adult ) == so while I know this IS huge and daunting = I do have that belief /sense that when needed = your heading to just the right expertise in getting his insight .

I think I"D be on that phone to his offices now = if you havn't already heard from the current neurosurgeon that consultation IS being arranged . -- It's been my experience this last couple years / that taking the need to get appt /consultation arranged , has moved faster = with less confusion ect , when I did take the responsablity to get it done .

I then needed to also see that records got faxed promptly - that "stuff " that the local physicans office normally does in prep to consultation = funny , but it seemed easier really / to own getting all the MRI films /records ect to go there inhand myself =- be better able to present the info in an order that made better sense to the biggest issues bringing me ( and my daughter ) to the consultation . == small stuff /and a bit more effort on my part really --but gosh darn it WAS faster than those calls over and over to strighten out referal problems had been , - faster than the repeat trips back to a specialist because needed studies and reports hadn't MADE it too his actual office =desk ( some of this = had to do with "shadow " charts kept / where stuff went to the "wrong " chart in the same practice at the uni center we were going too ) == I'd gotten fed UP with the promises not kept when someone's best intentions wern't the issue =

In short = trying to do what we discuss fairly often = GRAB and make sense of the whole trail of reports /timelines = meds trials and results ect = DID take effort /but paid off sooo much when we saw how MUCH of the detail involved in "need to know " for the situation = became sooo much more mannagable / ( one of the doctors told me it was easier to find needed info in the binder I'd put together =than in his own uni charting system in fact ) ==

and I know my binder is already at four volumes of stuff = yet there are things we wish to look at from YEARS ago now =my memory would NEVER begin to fill those gaps well == it's BEEN a big blessing to have it done /able to serve as that tool through the rest of my life now . ( same with my daughter's ) .

It's something we can DO during the bigger waits too = that I think does make a bigger differance .

so = best wishes to you both , glad your getting that insight into Dr M's thoughts underway ==and hopes it's already moving forward now .

Big gentle hugs mom == you and those with acm /sm affected kids are MY Hero's in reality == taking such efforts to see the best possible for their kids . We all wish /say we would do the same ==but doing it day after day after day - without much recognition for the toil it really does take = and making those bigger efforts such as YOUR doing == bring you up to that top of my quiet hero's list !

I hope you can find time for a bit of something special for yourself too = something really nice , simple =and yet well deserved !

Sarah in Paradise CA -acm /eds /multiple sclerosis =and other odd bits = LOL .
Sarah in Paradise
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Re: waiting and waiting.....

Postby wondermatx » Tue Feb 23, 2010 6:46 pm

thank you Sarah, for your insight! For what i have read Dr. Menezes is our guy, if we have to go down this road. I should have done this on my own, it was just that I was hoping if another dr. talked to him personally, that the ball would have rolled a lot faster. Lesson learned, and now we wait....It's just hard to see my son so miserable, and I feel hopeless....Not that surgery will fix it all, just wish there was another way.. We need to find a cure! we need to find that darn gene and fix it! thank you for the hugs!! hugs right back at you!! :)!
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