What to expect??

[winick99]

I am new to the forum and just today learned my 18 month old son who already has Cerebral Palsy has now been diagnosed with with CM. We do not know the extent of the damage as our appointment with the neurologist isnt for another month. So now that we are going to be sitting and waiting for a month to hear what he has to say I am trying to collect as much info as possible because at this point my mind is running wild on how this disease works. What can our child expect to endure throughout life with this disease, as if CP isn't going to be hard enough on him now something else for him to deal with. Thanks in advance for your information.

[linnielou232]

My heart goes out to your and your family at this time.  I know I am 49 and it is hard for me to deal with this at times.  My best suggestion would be to start making alist of thing's you need answered when going to see the NS.  Having a list of question's ready will help at the time of visit becaue there is a lot to absorb all at one time.  This way when you go you will be better prepared.  You have come to the right forum for the love and support that you need.  You will find more information on here that I ever did talking to any doctor's.  We are all here to support you in any way that we can.  Your not alone and we completely understand how scared you are right now.  As I suggest write down the test Selma suggested and have all alterative approached before making the decision of surgery.  If your NS is a true chairian special you will be in good hand's, and it also wouldn't hurt to get another oppionion.  I actually went to 3 different dr's before finding one we were comfortable with.  Keep us updated on your journey, and alway's remember your not alone.   We are here for you when every you just need to talk.  Best of luck.    :)   Linda

[selmaS]

  Chiari and spina bifida are closely related as they are spinal conditions, those with it are prone to other connective tissue disorders as well as auto immune conditions.

Do be sure they check ur little guy for sleep apnea...the smaller ones tend to have more of an issue and can not tell us....so do ask for him to be tested.

  And keep us posted as to what  u find out from the Dr.

[winick99]

Thanks for the information i still don't completely understand but until we see the Doctor I probably won't. We were told over the phone that the MRI showed he had this and that the doctor would go into more detail at our appointment.

[selmaS]

  With chiari the herniation of the tonsils can obstruct CSF flow and cause a sack(cyst) of CSF to form this is called syringomyelia and the cyst is called a syrinx.

ehlers-danlos syndrome is a connective tissue disorder- (EDS) (also known as "Cutis hyperelastica" is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (Type I or III). The collagen in connective tissue helps tissues to resist deformation. In the skin, muscles, ligaments, blood vessels and visceral organs, collagen plays a very significant role and with increased elasticity, secondary to abnormal collagen, pathology results. Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no cure, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems. Corrective surgery may help with the frequent injuries that may develop in certain types of EDS, although the condition means that extra caution is advised and special practices observed.

[winick99]

Thank you for your response, we had an MRI done that was how this was detected. What is ehlers-danlos and syringomyelia?

[selmaS]

  Hi and welcome to the Chiari forum.

  This condition is not a disease, but a malformation of the skull that forces a part of the cerebellum onto the brain stem and spinal cord which compresses them and causes symptoms.

There are related conditions, such as sleep apnea, and ehlers-danlos, syringomyelia,

The next steps would be to see what other related conditions he may have, and how they may be affecting him...ie- getting more testing like a CINE MRI to see if he  has a CSF obstruction.

  Make sure u get several opinions b4 u subject him to surgery and that the NS is a true pediatric chiari specialist.

    "selma"