syrinx increasing in size 22 month old

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

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Postby PandR'sMom » Thu Jan 24, 2008 11:38 am

From what I've heard Dr. Frim doesn't charge to read films. I'm not certain on this as we were referred directly to him by the orthopedic surgeon who ordered the MRI.

Don't expect a call back from Sheri (Dr. Frim's nurse) until Friday or quite possibly Monday. They are in clinic all day Thursday. And I do mean all day. It's not unheard of for their day to go until 8pm.
Kim
Mom to Patrick (12yo) & Rebecca (10yo, CM/SM/Scoliosis, decompressed Oct '06 by Dr. Frim)
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Help

Postby Lipper5 » Tue Jan 29, 2008 11:23 pm

I have recently been emailing back and forth with Dr. Frims nurse. He wants us to fly to Chicago to meet with him. She said he doesnt just look at the film. So now I dont know what to do. And now my sons Doctor is saying not to do the surgery with the new Doctor because he does adults and pediatrics. She wants me to go to someone that just does pediatrics. And at this point I just want a specialist that deals with mainly syrinx problems. I do not just want to end up confused even more...any help
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surgery

Postby Lipper5 » Wed Feb 06, 2008 12:30 pm

Well, Aiden is scheduled for decompression surgery at Penn State Hershey Medical on Feb 20. Wish us luck. And they have not done the surgery yet but so far I would HIGHLY recommend them.
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Postby angie7 » Wed Feb 06, 2008 3:51 pm

I would STRONGLY recommend seeing Dr Frim before your LO's surgery. He is mainly a ped and a true expert in SM, one of the best in his field. What can it hurt to have him check it out? I hope that if you really do have the surgery on the 20th, he has done several decompressions related to SM on children before. I would hate to see such a youngster end up worse then when he started..
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby Lipper5 » Wed Feb 06, 2008 6:13 pm

I tried the route of Dr. Frim but he would not just look at the films. Dr. Mark Iantosca and Dr. Diaz are Pediatric Neurosurgeons at Penn State Hershey PA Hospital. I put trust in them. They were the ones that helped the most. Something has to be done and we really cant wait much longer. His Syrinx grew over 1/2 the size it was in 6 months. This we feel is the safer route for the surgery options. If Dr. Frim was willing to review the films only I would have no problem listening to what he has to say but he doesnt want to just do that. And flying out there is really not going to make a difference. There is nothing we can do other that fly there and show him the discs in person. Thanks
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Postby brianfsmom » Wed Feb 06, 2008 8:55 pm

Lipper5,

Good luck with the surgery. Please let us know how your son is doing. Best wishes for a speedy recovery. I saw those doctors have a website with a wealth of information on chiari, and they include tethered cord in their coverage. That's good to see, sounds like they have done their homework.
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syrinx getting larger?

Postby momof3indenver » Sat Feb 09, 2008 9:42 am

Hi there
I have not posted in a long while. So long that I actually had to reregister since I forgot my username! :D I have also had another little boy since posting last!! Anyways, I just wanted to reply to the syrinx getting larger, second opinions etc.
My son who is turning 5 in March, was diagnosed with a syrinx first at the age 0f 21 months old. He complained of cnronic back pain and an MRI was done. Anyways, the short version is, he has been decompressed twice...and we continue to monitor his syrinx. It has never gotten smaller since his surgeries. Last November, we had a check up MRI done and the nsg says "it is fuller" but we are just going to watch it. We trust our nsg completely but have always gotten a second (or third) opinion along the way. We have consulted with Dr. Frim...he has always agreed with what our nsg has said..however, our nsg is a "chiari expert" We are in colorado and we only have to drive 2 hours to see him...but the reason I am replying is to let you know...you should definately follow your heart through this whole process! The first nsg we saw after my son was diagnosed with syrinx and chiari said "it was no big deal" wait and year and recheck it! UGH! I guess what I am getting at is my son overall is doing great. Although his syrinx is considered "fuller" from te MRI in November we are just watching him. His chiari is fine, plenty of space for csf flow etc...so no real reason for it not shrinking...also no tetherd chord or tumor! Please email me if you want to just vent! I feel your frustration!
Melissa
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Postby angie7 » Mon Feb 11, 2008 5:03 pm

I do hope all the best for your son's surgery. Keep us posted on how he is doing.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby angie7 » Fri Feb 22, 2008 9:43 am

How did his surgery go?
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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operation

Postby Lipper5 » Sun Feb 24, 2008 10:26 pm

All is done and over with. Thank God! Aiden did well. He just did not agree with the steroids. The first night was really bad in the picu. They had to try several drugs to settle him. Even Morphine did not work. He still complains with "ouey" and holds his head when I change the dressing at night. He still has a problem with moving his neck and is stiff. They say it will get better. I am hoping the Dr. calls tomorrow because he has a lot of fluid in there. I don't know if that is normal or not so if anyone can help out there that would be great. I apply the antibiotic ointment on and my finger can just keep going through. He had an MRI on the Monday prior to the surgery and in just one month his syrinx still was showing up bigger on the mri. We are doing an mri at 2 months instead of the normal 6 because of how fast his seems to be growing. I really hope this works because I dont want to see him go through anymore.
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Postby angie7 » Sun Feb 24, 2008 11:39 pm

Fluid? Like a leak or a build up? That is not normal! That can be very dangerous (if that is what you mean) and I would take him to the nearest ER!

And about "my finger can just keep going through" does this mean the incision is open or ? If the incision is open, it shouldnt be and you need to take him to a doctor now!

Have you contacted the doctor about this? What did he say? This news is worriesome, I just hope that I misunderstood your post...
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby Lipper5 » Mon Feb 25, 2008 7:34 am

Fluid build up. No leak. And I apply the ointment and it feels like you are touching something that is filled with water. If you were to touch the back of your head right now it would be hard. The entire shaved area is soft and fluid like.
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Postby angie7 » Mon Feb 25, 2008 9:55 am

Thats not normal. He needs to go to a doctor right now. He could have a leak inside and that is causing the build up. What all did they do to him? Did he have a duraplasty (where they open the dura?)

I'm sorry, I dont mean to scare you, but that is not normal and he needs to be seen for that right away...
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby Janice » Mon Feb 25, 2008 10:08 am

I agree with Angie. It doesn't sound normal to me either. Better to be safe than sorry.

Since you asked about it, it seems that it's something you're worried about. When in doubt, you should go with your gut. I know we tend to steer away because so many times we hear that everything is fine. However, I'd rather go and hear everything is fine than not go and he may be getting some type of infection.

Go with you gut and take your child to either the ER or the doctor (if you can get a same day appointment).

Take care and you both are in my thoughts and prayers.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby Lipper5 » Mon Feb 25, 2008 3:46 pm

I spoke to the surgeon that did the surgery. He said that the spinal fluid will collect in there for awhile. He said if it would get extremely swollen or become like a basketball where you could not push it in then that would be a concern. He offered to look at him tomorrow if we wanted but I feel ok leaving it go until next weeks visit.
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