daughters chiari 1

[Binyomin]

Recently my daughter has been diagnosed with chiari 1 malformation. Having persistent headaches. Do you know of any great neurosurgeons or nl who treat this condition and have good successes by patient referrals. I have heard of the chiari center in long island is it a good place do you know if its reputation is such? We live in brooklyn new york please help. Aldo ibuprofen seems to help her, she also has weakness and poo ain in her knees some light swelling of one knee, on two occasions she has toldmeof her heart rate being fast after light activity.Binyomin 123

[selmaS]

  So many Drs say the same and yes in people without Chiari that have a syrinx due to an injury it is found in the cervical spine as it is the result of injury/trauma to the least protected area of the spine...however we r talking about Chiari , not an injury and we have had many that had a syrinx in the lumbar, thoracic and cervical spine, so to know if a syrinx is ruled out, we must look at the complete spine and not focus on the weakest area. JMHO

I would suggest google or search the Drs name see what it states his specialty is....it should not be a blanket neuro surgery....it should state Chiari Malformation and related conditions....if not, this is not a true Chiari specialist...he may be able to do surgery, and may have done a few, but not one I would choose to go to .....

It does not Matter if it is a well known institution , hospital, university...it matters who the Drs is , how well informed and experienced they are with Chiari and related conditions....do not get sucked into the trimmings of the department....and it's accolades...search for info on that dept and Chiari and use that as ur guide.  Visit with a couple Chiari specialists and compare them and go with ur gut, once u educate urself , u will know which Dr is right.

Yes I did have temporal Headaches and HA's more in the front of my head .....and I did have feet pain and issues and many problems with shoes....none ever were comfortable....

What kind of foot pain does she have?

[Binyomin]

Thnak you ever so much I asked him and he siad it would show some signs of commpression in those areas plus he stated "the MRI down to the mid thoracic region demonstrated no Syrinx, addtionally for if they see somehting the always see it in the upper spine." HOw wpould I find out if he ahs a great experience with Chiari as the NYU site states eh does-Dr Wisoff charimen of NS at NYU in New York. Selma it is a prestigiously well known NS department. He seemed very confident about doing another MRI after our daughters growth spurts in five eyars. Obviously we will probably do anotehr one in one eyar or one and a half years. Also we are pursing a neruologsit here in Brooklyn to follow up. Did you ever have frontal hreadaches and feet pain with your problem?
Thanks B.

[selmaS]

  I was 48 when I finally got my Chiari, EDS and tethered cord DX's.....it was 2 months b4 my 50th birthday that I had my surgery,,,,,

And this was after I had a drop attack in May of '07 that caused injuries that required surgery to repair....

I had gone to Drs all my life trying to figure out what was going on/wrong....I was told migraines, anxiety....all the (the Drs have no idea DX's) typical things many of us get....but after the fall I took in '07 my one surgeon pushed for me to get testing for Lupus as that is what was on my chart as a possible condition/DX...but considered borderline....so this Dr set up a visit with a rheumatoid Dr and I was sent for a MRI and the rest is history....lol.....

A cervical MRI can only rule out a Syrinx in the cervical spine, not one if it is in the thoracic or lumbar spine....so deff have those areas checked as well.

  I also had a NS tell me I did not have Chiari after being told I did have it, then went to another one who said I did, but it was above him....what I found out is there are very few well informed and experienced Drs with Chiari....and far too many of us with it so, it is not easy to locate a Dr that does know what to look at.....so we have to travel and do a lot of research in order to know when we found the right Dr that is capable of helping.

[Binyomin]

I emailed the surgeon about that, he told me no evidence of a syrinx was seen by him eventhough the MRI was down to the level of the lower cervical region. He said there would be different types of clinica pictures and occipital headaches and he would not touch her for surgery, as a potential candidate with a ten foot pole. He did say somthing interesting that sh is one in ahundred and when I asked him what he meant he siad that on in a hudred of chiari, also that the mRI showed down tot he elvel of the thoracic rgion, I don't rtemmeber that as the nuerologist asked for an MRI of the head and cervical area. He told em to get another MRU after her growth spurt in four to five years. We are seeing a nerologsit this week will update you. I apologize for asking, but how old were you upon frist beng diagnosed with Chiari and when you ahd the surgery.Also the time between the two events.
Binyomin

[selmaS]

  No I am not a medical professional at all, I am just a member here that also have Chiari, EDS and a few other conditions....I just share what I have learned and researched .

  EDS is ehlers-danlos syndrome which is a connective tissue disorder....
Many with Chiari can also have EDS and the symptoms vary.

Many do not require surgery when DX'd or for a long time....we are all different....

Since u said no syrinx, did she have a MRI of the thoracic and lumbar spine too?

[Binyomin]

Thank you ever so much I went to the chairperson at NYU recconmended as a top NS, seemed very knowledgable to us. Who said "no surgery" and to take a follow up after her growth spurts, recommended a neurologist, unfortunatley the neurologist and her group do not take our daughters "medicare based insurance" ("Affinity Health"). We live in NY Brooklyn and are under circumstantces to follow the insurnace. Additionally the NS stated she, our daughter is nto a cnaditdae for surgery and should do a follow up MRI after her growth spurt in perhaps foru years, no sryinx. What is EDS? Also are you a nurse? or MD?
B.

[selmaS]

  Hi and welcome to the Chiari forum.

There is more testing ur DD should have....as not everyone with Chiari is a surgical candidate.....and  the Chiari Institute see those that surgery can help.

Most of us meds do not help with our pain, so it could be ur DD's HA's are attributed to something else....like EDS, or something like that, that is related to Chiari.....

U may want to contact TCI on Long Island to see what NL u can go to for more testing.They do have their own NL they work with and may offer to do more testing there for u.

I had my surgery at TCI 5 yrs this May....I was very happy with my NS and the care I received.