Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 Hey everyone--- I had a quick question....Have we placed an order yet for the cooling vests? I just didnt want to miss it. Also...Logan is due for a repeat MRI of the seriously small syrinx they found a few months ago. It was soooo small they couldnt get a measurement on it. The dr said that they usually try to drain syrinx's but Logan's was smaller than the needle they would drain it with...so they would actually have to dialate the syrinx just to drain it. He said ANY neurosurgeon would be insane to do that....so his advice was to repeat MRI to "make sure" it went away. Sooooo....here is my thought....I am SUPER nervous about him receiving more anesthesia/sedation during all these castings....plus...NC doesnt offer casting so Im crazy nervous about them knowing how to get to him if something were to go wrong during the MRI. I thought about doing the MRI during out of cast time but that also is 2 anesthesia episodes VERY close together and what about possible drug interactions within that time frame? My thought was to ask the neurosurgeon if we could possibly wait until casting was done theeeeennnnnn do the repeat MRI... Does anyone know if that is a crazy bad idea? Im driving myself insane on all the "what-ifs" thanks everyone Logan's mama (12 months old, 45 down to 0 in 2nd cast) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2010 Report Share Posted June 27, 2010 I couldnt agree more. 2nd, 3rd opinions are always best if you're not 100%. , please let us know what happens. HRH > I forgot to add one other thought- my research said that the syrinx can > grow back, even if the surgery is performed and the fluid is extracted. > That's another reason that we don't feel it's the right thing to do for > our son at this point. It does blow that we will have to watch it for > his whole life, but I guess that is better than not knowing it's there > until the symptoms have gone too far, if any ever crop up. Hope this > helps. >  Heidi, Bexon's Mommy, (2 and a half years old, in 7th cast from Salt > Lake City Shriners, currently down from 62 degrees to 19.7 in cast) > > > > > ________________________________ > From: NIck Guthe <nickguthe@...> > infantile scoliosis treatment > Sent: Wed, June 23, 2010 8:53:56 AM > Subject: Re: Logan > >  > , > > I know a little bit about this, our son has a small syrinx. We were told > that they would not drain his unless it grew larger. Surgery and > especially on the spine is always a risk, it is not worth the risk if it > could be an incidental finding and may never grow. We were told our > then-ortho had seen a hundred of these that never grew. I would get a > second and maybe third opinion before operating. I would not hold off > casting for it, unless it is a necessary follow up to look for tethered > cord, Chiari, brain tumors, etc...or if there is a real problem with the > first films. Many of us had to get both brain and spine as a follow up > MRI. If it is just to follow up on a very small synrinx, you can wait a > year, according to our neuro, to follow up and make sure it hasn't grown. > We did do that follow up in between casts, that was fine, we did it the > same week- it did not grow at all. I wouldn't do it the same day, but a > couple of days apart was just fine. > Our son has had anesthesia 11 times, he is totally fine. > > The syrinx will have to be checked for life, because if it grew suddenly, > it can cause permanent nerve damage, but my opinion would be to not put > off casting for a progressive case, unless it is absolutely > necessary. In my experience, surgeons generally want to operate- SLC > Shriners has been an exception. >  Heidi, Bexon's Mommy, (2 and a half years old, in 7th cast from Salt > Lake City Shriners, currently down from 62 degrees to 19.7 in cast) > > > > > ________________________________ > From: Medlin <amanda.medlin@ ymail.com> > infantile scoliosis treatment @groups. com > Sent: Wed, June 23, 2010 5:10:03 AM > Subject: [infantile_scoliosi s] Logan > >  > Hey everyone--- > I had a quick question.... Have we placed an order yet for the cooling > vests? I just didnt want to miss it. > > Also...Logan is due for a repeat MRI of the seriously small syrinx they > found a few months ago. It was soooo small they couldnt get a measurement > on it. The dr said that they usually try to drain syrinx's but Logan's was > smaller than the needle they would drain it with...so they would actually > have to dialate the syrinx just to drain it. He said ANY neurosurgeon > would be insane to do that....so his advice was to repeat MRI to " make > sure " it went away. > Sooooo....here is my thought....I am SUPER nervous about him receiving > more anesthesia/sedation during all these castings.... plus...NC doesnt > offer casting so Im crazy nervous about them knowing how to get to him if > something were to go wrong during the MRI. I thought about doing the MRI > during out of cast time but that also is 2 anesthesia episodes VERY close > together and what about possible drug interactions within that time frame? > My thought was to ask the neurosurgeon if we could possibly wait until > casting was done theeeeennnnnn do the repeat MRI... > Does anyone know if that is a crazy bad idea? Im driving myself insane > on all the " what-ifs " > thanks everyone > > Logan's mama (12 months old, 45 down to 0 in 2nd cast) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2010 Report Share Posted June 28, 2010 Hey--- I called and spoke with the Neurosurgeon's PA and she said we could push it to a 6month recheck if we like...which would make it Sept. So we went with that. We will still be in the same boat...but it wont be this Wed. Im just having a hard time having the repeat MRI done (another anesthesia episode) when his syrinx is "smaller than the needle they use to drain syrinxes." Maybe I will feel better about this in a few months....I still want to wait until casting is completly done...but you know...I left my medical degree at home.....sigh. (Logan's mama, 12 months old, 45 down to 0 in 2nd cast) From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Sun, June 27, 2010 9:27:22 AMSubject: Re: Logan I couldnt agree more. 2nd, 3rd opinions are always best if you're not 100%., please let us know what happens.HRH> I forgot to add one other thought- my research said that the syrinx can> grow back, even if the surgery is performed and the fluid is extracted.> That's another reason that we don't feel it's the right thing to do for> our son at this point. It does blow that we will have to watch it for> his whole life, but I guess that is better than not knowing it's there> until the symptoms have gone too far, if any ever crop up. Hope this> helps.>  Heidi, Bexon's Mommy, (2 and a half years old, in 7th cast from Salt> Lake City Shriners, currently down from 62 degrees to 19.7 in cast)>>>>> ________________________________> From: NIck Guthe <nickguthe@...>> infantile scoliosis treatment > Sent: Wed, June 23, 2010 8:53:56 AM> Subject: Re: Logan>>  > ,>> I know a little bit about this, our son has a small syrinx. We were told> that they would not drain his unless it grew larger. Surgery and> especially on the spine is always a risk, it is not worth the risk if it> could be an incidental finding and may never grow. We were told our> then-ortho had seen a hundred of these that never grew. I would get a> second and maybe third opinion before operating. I would not hold off> casting for it, unless it is a necessary follow up to look for tethered> cord, Chiari, brain tumors, etc...or if there is a real problem with the> first films. Many of us had to get both brain and spine as a follow up> MRI. If it is just to follow up on a very small synrinx, you can wait a> year, according to our neuro, to follow up and make sure it hasn't grown.> We did do that follow up in between casts, that was fine, we did it the> same week- it did not grow at all. I wouldn't do it the same day, but a> couple of days apart was just fine.> Our son has had anesthesia 11 times, he is totally fine.>> The syrinx will have to be checked for life, because if it grew suddenly,> it can cause permanent nerve damage, but my opinion would be to not put> off casting for a progressive case, unless it is absolutely> necessary. In my experience, surgeons generally want to operate- SLC> Shriners has been an exception.>  Heidi, Bexon's Mommy, (2 and a half years old, in 7th cast from Salt> Lake City Shriners, currently down from 62 degrees to 19.7 in cast)>>>>> ________________________________> From: Medlin <amanda.medlin@ ymail.com>> infantile scoliosis treatment @groups. com> Sent: Wed, June 23, 2010 5:10:03 AM> Subject: [infantile_scoliosi s] Logan>>  > Hey everyone---> I had a quick question.... Have we placed an order yet for the cooling> vests? I just didnt want to miss it.>> Also...Logan is due for a repeat MRI of the seriously small syrinx they> found a few months ago. It was soooo small they couldnt get a measurement> on it. The dr said that they usually try to drain syrinx's but Logan's was> smaller than the needle they would drain it with...so they would actually> have to dialate the syrinx just to drain it. He said ANY neurosurgeon> would be insane to do that....so his advice was to repeat MRI to "make> sure" it went away.> Sooooo....here is my thought....I am SUPER nervous about him receiving> more anesthesia/sedation during all these castings.... plus...NC doesnt> offer casting so Im crazy nervous about them knowing how to get to him if> something were to go wrong during the MRI. I thought about doing the MRI> during out of cast time but that also is 2 anesthesia episodes VERY close> together and what about possible drug interactions within that time frame?> My thought was to ask the neurosurgeon if we could possibly wait until> casting was done theeeeennnnnn do the repeat MRI...> Does anyone know if that is a crazy bad idea? Im driving myself insane> on all the "what-ifs"> thanks everyone> > Logan's mama (12 months old, 45 down to 0 in 2nd cast)>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 , Awesome news! Zero sounds great to me! Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast) From: Medlin <amanda.medlin@...>infantile scoliosis treatment Sent: Fri, July 16, 2010 5:04:51 AMSubject: Logan Hey everyone-- Update--Logan is finally doing better. This cast was a little more sore for him, so Motrin was our friend the first two days. They were able to get him at zero again...but he didnt push him past zero this time. He said they would try again next go around. I think he may have stretched him this time...he looks taller! LOL! But he is doing great and walking along the couch and chairs again. Logan's mama (13 months old. 45 down to 0 in 3rd cast) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 Whoo hoo!! Well, you just cant beat that! Very happy for you guys! Almost home free! HRH > Hey everyone-- > Update--Logan is finally doing better. This cast was a little more sore > for him, > so Motrin was our friend the first two days. They were able to get him at > zero > again...but he didnt push him past zero this time. He said they would try > again > next go around. I think he may have stretched him this time...he looks > taller! > LOL! But he is doing great and walking along the couch and chairs again. > > > > Logan's mama (13 months old. 45 down to 0 in 3rd cast) > > > Quote Link to comment Share on other sites More sharing options...
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