Post Op Chiari Follow up

[Tom3503]

My 36 year old daughter had decompression surgery on 2/6/15 at Johns Hopkins.  She did not have the typical pain associated with Chiari.  Her problems were balance related and a stumbling gait.  It also turns out she had eyesight issues she didn't even know were Chiari related but discovered after surgery when she could see much better.  The balance issues improved somewhat but the stumbling gait issues did not.  What really concerns me now is the lack of post surgery follow up by her surgeon at Hopkins.  He has seen her one time since surgery.  There has been no post surgery MRI ordered and no further follow up appointments.  It has been almost 7 months since the surgery.  The way this doctor works is he tells you when to come in.  My daughter has tried contacting him at the email address given and she has called the office.  Still nothing.  Is this typical for what is supposed to be the #1 hospital in the country for this type of problem? If it was me, I'd be on the phone daily but my daughter is not that pushy.  

[meg525va]

Who is the DR at Hopkins? My 16 yr old daughter is seeing Dr. Ahn there in a month for an initial appointment.

[selmaS]

  So sorry they are not good at the follow ups....if needed try contacting a different Dr to help.....

How many times a Dr has done the surgery is not always the issue...but they also need to be well informed and experienced with ALL related conditions .

It can be these related conditions that can affect how we feel and heal post op. For some Drs this is a procedure that once done they feel the patient was fixed and will not need more visits....especially with a surgeon...they do not tend to spend much time with patients once they feel the incision has healed....

Be a squeaky wheel and keep calling...and if no response.....find a different Dr like I mentioned b4.

How is she feeling now?

[Tom3503]

The surgeon my daughter had has done the decompression surgery over 800 times.  I can't imagine there being anyone better, with more experience, than that. We are local to Hopkins so meeting for an appt. is not an inconvenience.  And I do expect better follow-up but am not seeing it happen.    

[kwalker0004]

John Hopkins is a top rated hospital but not for Chiari. They don't claim that no where. What makes them a top rated hospital is the fact that they deal with a lot of different issues and not just one. Its a great place to be but they are not known for their follow ups as they must release you back to your PCP and your NL after you face surgery knowing most are not from that area or cant afford to keep running to Baltimore for a 30 minute appointment.

The only reason I know this is because I am having surgery at the end of this year there. It isn't set in stone yet. The doctor that is doing mine has said that once he is done with the two week post op he will recommend that there be a year MRI on the date I had my surgery on but he wouldn't be seeing me unless issues arise once again. You have to remember that there are many patients that doctor has to see. You must be persist on seeing the NS if you fear your daughter is having more issues. Or find another that is willing to see her.

[selmaS]

  Hi and welcome to the Chiari forum.

It is typical  to only see the Dr a few times post op and to have a MRI around 1 yr post op unless there are new issues that arise post op........

Not sure where the info is that gives that location the # 1 rating......sometimes a big name hospital is not the place to go, but look to the Dr themselves as to the experience they have and how much research they do with not only Chiari but ALL related conditions.

I would suggest looking to a true Chiari specialist to have a follow up visit if her Dr is not willing to do so.