Please Help!!!

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Please Help!!!

Postby pandasmom » Wed Jun 20, 2007 7:24 pm

My daughter is 16 she had a MRI of her lower back about 4 months ago that showed a possible syrinx higher up on her back, She returned for another MRI that confirmed the syrinx T5-T9 With all of her symptoms numb leg, pains shooting down her crotch that would send her to the ER, 2 years of stomach pain with numerous exploratory surgeries to rule out gynecological problems, and numerous other painful symptoms we were relieved to know the cause of her pain, After researching syringomyelia I decided I wanted her to see the best at Children's Hospital. The neurosurgeon agreed the syrinx was causing her pain, I was so happy to know he understood what we had been going through. They did a brain MRI no chiari but the radiologist at Children Hospital looked at the original MRI's of her back and he is not 100% sure if it is syringomyelia, The neurosurgeon will need to look at it when he gets back on July 9th and make the decision if a syrinx is causing her problems. I trust this Dr's. opinion totally but it is so hard to wait 2 more weeks. I just need someone to talk to and see if anyone has had the experience of 2 radiologists reading their MRI and giving different opinions. Thanks for listening it has been such a long hard road and to find out we may be back to square one is so hard.
Thanks Pandasmom

Postby jjames » Wed Jun 20, 2007 9:47 pm

Pandasmom -
If there is one good thing about this, it is that there is an enormous support group online, and sympathetic ears that are always willing to listen and console. I was 17 when I had my decompression surgery, so I know how scared your daughter may be. And my parents were a huge help and support, so if you need someone to talk to I know that my mom would be willing to chat and listen. Knowing what I know now, I wish that we wouldn't have rushed into the surgery so fast. I was DX with ACM/SM in October of 1998 and had the surgery in December. Now we are realizing that the first surgery may not have been successful and I may be facing another decompression surgery. My advice would be to make sure that you are absolutely comfortable with your doctors, ask lots of questions, and do your research. There are many people on this board who can answer your questions. Let me know if you want to talk to my mom or myself, as I will help you and your daughter in any way possible.
~Everything is always ok in the end. If it's not, then it isn't the end.~

1998 Decompression; 2007 PFR @ TCI
Syrinx C1-T10
Mild Scoliosis
Mom to two wonderful sons!
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Joined: Wed May 30, 2007 11:06 am
Location: Nebraska

Postby mac » Thu Jun 21, 2007 12:32 am

Mom...I'm so glad jjames saw your post and offered help. Sounds like the voice of experience and there is nothing better than that!

Yes, you will find here so many people who are listening and ready to give you a hug and help shore you up a bit as you go through some of this.

It must be terrible to have to wait so many days before you see the NS again!! Just try not to stress and your daughter should do the same b/c we've all learned with neurological conditions that stress and anxiety are one of the top factors in causing symptoms to become worse. Maybe, if possible, try to do something relaxing and special together, even if it's microwaving popcorn and watching old movies together.

And yes, radiologists are human too and since reading films requires the human eye and human brain to interpret, it's not an exact science. many times one doctor will see one thing and another not see it and vice versa.

I hope you get the name and the dx to go with the symptoms so you can arm yourself to fight the good fight. It's tough, but you are a very loving Mom, it's easy to see that and you will be there for your daughter.

hugs, and welcome to the board

panda mom

Postby razzle51 » Thu Jun 21, 2007 5:32 am

I know you will find the best care possible and welcome to the board . I sent you a PM also .
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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