First, thanks for the notes of welcome. I truly appreciate it!
Last year an mri report stated I showed mild chiari malformation with a suggestion for treatment. The NL I was seen by told me it was insignificant and did nothing. However, my symptoms have worsened and gotten problematic, so I headed back to my PCM who is referring me to a NS and is having updated Mri. I am having an incredibly hard time believing this could be happening. Is there any chance last years mri could be wrong?
Hi..
1st off..WELCOME!!!
I am happy that you have a good primary who is ordering a new MRI and referring you to a NS. My own experiences with NL were like yours...few NL's know much about Chiari...in my opinion, anyway.
As far as MRI's being wrong...I have heard that the MRI can be read wrong...but honestly, it usually mis-read or called and incidental finding in Chiari cases.
When is your new MRI??? When do you see the NS??? Please keep us updated.
Nice to have you here...try and relax...yeah, right..you must be thinking, right????
Let us know how you are and ask any questions ...we are all here to help one another.
Peace,
Lori
Thanks for your response, Lori! I've asked several people about the possibility of last year's MRI being read incorrectly, all with the same general answer. It's just hard to grasp right now!
Anyway, I am going for both a brain mri & c spine mri on Friday, then my PCM will be contacting John Hopkins to make my NS appt. Hoping to get in soon, but I realize it might be weeks or months to get in with a specialist.
I'm going to do as much reading as my eyes will let me!
Thank you again so much!!
Kellie
No Problem, Kellie.
It is great that things are getting done..MRI of both brain and full spine....and John Hopkins...only heard good things about them.
Good luck Friday with the MRI..keep us posted and ask any and all questions you may have.....we are all here to share our experiences with one another.
Peace,
Lori
Cholmee,
I have been working with Hopkins since mid-October 2011 with the working diagnosis of POTS (postural orthostatic tachycardia syndrome) then in late November I got diagnosed with CM. My PCP familiar with CM stated that I my POTS was caused by CM and I should change who I see at Hopkins. Since Hopkins did not have my records at this time it was not a problem. When they received my records they referred my to John Weingart (http://http://www.hopkinsmedicine.org/neurology_neurosurgery/expert...). He reviewed my records and within 10 days I had an appointment for 9 days later ; had to reschedule but that is another story for another time.
Whoever they assign you to get everything scheduled please do not hesitate to contact them, I called my rep, emailed , and faxed just to keep myself in the loop and send some of the reports I have, but also to make sure they were working on my case as well.
First get your referring doc to gather all pertinent test info (hand carry you MRI films or CD). I think having the medical information from your referring doc ready to go is the main and most expedited way. Next, go on their web site (http://www.jhu.edu) to schedule. Complete the forms they will send and from when you select your dates they should be able to get you in.
They seem to be able to get you in quickly, mine was under a month after receiving the info the doc was to send (which is where my wait came from not Hopkins). Here is the original email I received from Hopkins :
Dear: Prospective Patient:
Thank you for selecting Johns Hopkins Hospital for your medical needs. Johns Hopkins USA is delighted to help you receive the best possible care at the #1 ranked hospital in the United States.
To request an appointment or information regarding treatment at Johns Hopkins, please follow the steps below. As soon as the requested information is received, our Johns Hopkins USA Medical Concierge will select the most appropriate physician to review it. At that time, we will inform you of the recommended treatment and/or confirm the date and time of the appointment at Johns Hopkins.
STEP 1: Complete Appointment Request Form:Please complete all information requested in the attached Appointment Request Form and return it via fax or e-mail.
Please include an enlarged copy of your medical insurance card (front and back).
STEP 2: Send Patient’s Medical Reports: Please send via e-mail, fax or courier a complete medical report in English with the above completed Appointment Request Form. The report should include the patient’s diagnosis, notes of diagnostic, radiological and pathology studies, and a description of current treatment. All pertinent Films should be hand-carried to the Appointment.
STEP 3: Send all information to my attention at our administrative office:
( The person they assign will have this info for you.)
Please be assured that Johns Hopkins USA is committed to protecting your clinical and financial information.
We hope the above step-by-step process is helpful. Please do not hesitate to contact us if we can be of further assistance.
Sincerely,
If you would like I can send you the other attachment(s) that came with this send me a message and I will get it to you. I have my appointment on Feb. 7. If you want I can get lodging info for you while I am there, just let me know.
Hope all goes well and welcome.
Mike
Mike,
Thank you so much for the info! It sounds like they're very thorough upfront, which is great! If you wouldn't mind, please forward any general info you can share.
I'll be requesting copies of my older mri plus copies of the 2 I'm having done tomorrow. I also have films from 2007 that didn't report CM1, but did report problems with my CSF and stenosis. I should probably take those for comparison too.
I appreciate all the support & info! Knowing someone else is heading to the same hospital for help is very reassuring!
Hope everything goes well with your upcoming appt too,
Kellie
The upper right hand corner will change for you, it will have your rep and contact information. The blank form is attached and a few other pieces of info cause I asked about what is considered pertinent information and I see what you are taking and reviewing their response to me, I wouldn't want you to take too much that they might not look at and here is their reply
Medical Records Guidelines:
We are looking for the pertinent medical records regarding the condition(s) for which you are requesting an appointment. In general we need recent clinic notes by your treating physician that has a narrative regarding your specific medical concern(s). In addition we would like to have the written reports of any testing that has been done regarding your condition (i.e., Blood Work, X-rays, Scans, MRIs, etc…). We want the most current information from generally the last 6 months. Most physicians prefer 25 pages at most of written medical records to review.
Once I have your records, I will send them for review by the appropriate department(s), they will assign the appropriate physician for your case, and then I will coordinate the scheduling of your appointment(s). You may hand carry any additional records to your appointment once you are scheduled.
Also for lodging if you need it here is that contact information: The number to our Accomodations line is 1-410-614-1911. They will be able to assist you on housing questions. Don't know why it pasted different but its there.
The other attachment were pictures of their logo, I really didn't think you would need need, but if you want them hey I'll send them LOL :)
If there is anything else I can help you out with please let me know.
Mike
614-LBAppointmentRequestForm.doc (4.32 MB)