Just recently after 3 more MRI's and 5 more doctors, I have some new diagnoses! Great!.. I was told I have Degenerative Joint Disease in my spine and Papilledema in my eyes. Because of the eye problems, they thought I had Pseudo Tumor Cerebri, but insisted I have a spinal tap to ensure so. I told them they needed to check into doing to procedure on someone with Chiari. They ensured me that from comparing my new and old MRI's that my herniation shrunk from 5mm to 4mm. On a second opinion they told me odds were that it was just taken from slightly different views, and since it wasn't the same doctor or MRI machine, that there could easily be a 1 to 2 mm window for error. Anyhow, the doctors that ordered the spinal tap told me that since mine had gone down to 4mm it wasn't even really Chiari anymore, so there shouldn't be any harm in doing the procedure..finally (and reluctantly) I agreed. I wish I hadn't a week and a half later I am still having more excruciating back pain than normal in the area they did the puncture. After the procedure however they told me that the CSF pressure was normal, ruling out the Pseudo Tumor. Now I have to go back on July 2 to see a Neuro-Opthamologist. I hate just being tossed around like I have been. They gave me some new medications to try Nortriptyline and Zolmitriptan (the latter was $356 for 15 pills, so I just didn't get that one). It is supposed to help with my sleeping/headaches/depression/anxiety but after a week and a half no difference in any of the above so far. I feel like I am never going to get anywhere with any doctors I go to. I was told by the hospital that they had a Chiari specialist Neurosurgeon....I dont know 100% if they meant the doctor I saw or a different one..but I still haven't gotten anywhere, and once again they start telling me most of my symptoms aren't Chiari related at all...I dont know what to do anymore. Has anyone else been diagnosed with DJD or Papilledema? or are there suggestions out there.. I feel like I have went full circle back to the starting line. I am so frustrated with people trying to tell me they understand, or they know what I am going through, and they don't! I feel like this huge weight is just breaking me down. I am so ready to just give up. Nothing I try works, no one can help me, and if someone doesnt soon I am going to lose it. I wish I could just find one doctor who believes me and understands me, and helps me find out why my body is aged well beyond the 23 it should be.
any help/suggestions or anything would be appreciated!!!
I know many here have degenertive disk disease...which I feel is very similar to DJD.....not sure y, but alot do have it. I was also dx with EDS- Ehlers Danlos Syndrome....which can be part of the reason my disks r out of whack.
I do believe that on Diff MRI's a herniation can appear to be a diff size, but I do not believe it has shrunk...rather that the slice they took was of the smaller edge....I was told to imagine a herniation like an upside down pear......if it is sliced in the middle and measured there that is the longest point so the biggest herniation, but if the next MRI is of the outside edge, it will appear smaller.....but it is not.....only a diff view.
I hope this makes sense......But the biggest problem is the drs know what chiari is, but not enuff to really help u.....a chiari specialist is the only way to get the help u truley need.
There r too many, NS's that will offer the little they know instead of sending u to someone that knows alot more.
Sorry u r going thru this....I felt like a ping pong ball at one point......
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