Should I be worried?

[WendyFM123]

I was just diagnosed with Thoracic spine pseudomeningocele and Chiari malformation. I also have scoliosis and NF1. I started having headache 4/16 and they only got worse. I didn't go to the doctors until I felt so much pressure on my eyes, ears and the back of head when I coughed. It felt like I was going to die. I had a MRI done on a unrelated issue and the image showed something on T8 of my spine. Since I have NF1 that's what we thought it was. So I was waiting to see a specialist at UCLA medical center. Didn't get in until 2/1/17. They did a CT and this what they found on my spine

FINDINGS:  

Multiple large cystic outpouchings from the thoracic spine are seen traversing an expanding the neural foramina predominately on the right side from C3-4 through T8-9, the largest of which are seen from C4-5 through T6-7 and at T8-9. The largest lesion
spans up to approximately 39 mm CC x 40 mm AP x 52 mm TR. There is prominent S-shaped scoliosis of the thoracic spine. Edematous changes are noted in the right paraspinal soft tissues at the level of the large meningocele as.

No abnormal enhancement is seen within the spinal canal. No significant foraminal or canal stenosis is seen at any level. Note is made of small T2 hyperintense foci along the dorsal aspect of the upper thoracic cord from T2 through T4 which may represent
tiny foci of myelomalacia.

The doctor say it's connected and since my Chiari is minor we are going to hold off on surgery. They will do another CT and MRI next year or if my headache get worse. If the pseudo get any larger they will have to have surgery to remove them and they will do the surgery on my chiari...

Sorry so long....

[selmaS]

Hi and welcome to the Chiari forum.

It is not easy to deal with Drs a nd getting answers and treatment with Chiari and related conditions but to  have something else that is not related to Chiari in addition may make it even harder since you will need two different Drs one that specializes in the NF1 and the other in Chiari.

Not all Drs are well informed on Chiari and how it can affect us so you will need to be reviewed by one that is a true Chiari specialist...one that will also rule out ALL related conditions as well....and will work well with your other Dr for your NF1.

[WendyFM123]

I went to UCLA medical center to see a NF specialist. We thought what was on my spine was a NF's and was shock with my diagnosis. The Neurologist I'm seeing now does specialize in Thoracic spine pseudoomengocele and Chiari malfunction. Everything I'm reading about the surgery sounds scary. My doctor said we just have to wait for my symptoms to get worse, because their will be multiple surgerys. The cure sounds worse than that Disease. Has there been anyone who was diagnose and didn't have to have surgery? Now I know if and when I start getting those awful headaches what their cause by.

[selmaS]

There are many that have been DX'd and have not had surgery...it depends on the symptoms you are having......I had surgery in '09 and am doing better then I was before surgery....I would do it again.

[WendyFM123]

Thank you very much that helps a lot..