Getting Records

I was diagnosed with syrngomylia 3+ years ago. I have since had decompression surgery and have had a shunt placed in my brain for hydrocephalus. My old NS then wanted to place a shunt in my spine to further drain my syrinx. I decided to receive 2 other opinions (Cleveland Clinic and U of M) before moving forward with another surgery. Both NS's said to not have the 3rd operation, as my syrinx although still present, had decreased in size. So now I keep gonig back to for "check-ups/MRIs" to monitor its size. Although my MRI's show that it is not growing, I keep having horrendous symptoms off and on - more on lately.

I definitely do not want to have another surgery, but I also do not want to progress. If I decide to seek another opinion with someone such as Dr. Oro, what records should I prepare to have in order? Besides having my MRI's, I have been horrible about getting information from my past Drs. and do not know the best way to proceed with getting my files. I just started keeping a journal of my symptoms. I like my current NS, but I am starting to get the feeling that he mainly looks at my MRI's.

Your suggestions?

[selmaS]

Hi and welcome to the chiari forum.

U mentioned u were dx with syringomyelia and had decompression surgery which would mean u also have chiari.

The best way to get copies of the MRI and the report is to call the facility that did the study...request the copies...they may ask u to pick them up after they have a chnce to bring them up.

Dr Oro is a great suggestion especially for someone that already had surgeries...he does not shy away when u don't have a virgin back.

Depending on how long ago the tests were he will only use it as a reference to see where u r now and u will need new MRI's...I was told nething older than 6 months they will repeat. Or if they do not like the resolution and slices that were done.

I hope this  is helpful to u and please continue to ask ur questions.

"selma"