The good and not-so-great...

[dkdean]

Had my follow-up appt with Dr Di yesterday as well as MRI's (with CINE flow and contrast)--the good news--no syrinx, no pseudotumor (based on LP), no tethered cord.  The not-so-great--Vision problems are here to stay and will continue to get worse as the Chiari progresses over time.  Di said that will probably be my most noticeable symptom based on it (and the dizziness) being the first symptoms I developed.  No surgery right now, but just seeing how symptoms progress (or not???) over the next 6 months.  I am going to see a Neuro-Optha at CC in late June as Dr Di's suggestion since so many of my symptoms are visual.


So, kinda sad that there really isn't much to be done, but glad it's not too bad right now.

[dkdean]

Yeh...I really do not want to have surgery...and know that it won't fix the vision (As it currently is)....I was just hoping there would be **something** to do.  I am really hoping that this won't progress any more--and surgery will not be needed at all....we shall see what the future brings.

I am very confident with Dr Di and feel that he and his PA really listen to what I am saying and know their stuff--esp with Chiari.  I just am wishing their was a magic pill :-)

[*Stormy*]

I have heard so many good things about Dr. Di so you seem to be in good hands! I am glad that he has a good plan on follow up and that he is making the necessary arrangements to get the proper testing done.

It's a tough situation all around, you want to get better and not have these symptoms at all but like Selma mentioned, the outcome of the surgery is so hard to predict that NS have to make sure they are making the right recommendation. So for now, it seems like you are on a good plan...just make sure you mention any new or worsening symptoms to your NS right away.

Take care and good luck with the neuro-optha....I hope they will be able to add a little insight into this for you.
Carolyn

[Amethyst3]

The situation might not be as bad as it looks.  Before recommending surgery, surgeons are technically supposed to show in the medical records that the patient has tried something else first, or that they have progressive symptoms.  Otherwise they can get a bad reputation.  Maybe your records don't show it enough yet, so he's just doing his job.  If you have your lens prescription now, and have it again in 6 months, that might show the difference to show that it is progressing.  And of course it's good he's set you up with the neuro-opthalmologist to document how it is affecting your vision.

[selmaS]

well u were right ....the good and not so great news....but the best news is u found a chiari dr that is watching u...and sending u for more tests on ur vision....and not willing to  cause more symptoms to develop when u don't need them.....

bcuz this surgery is so touchy, the benefits must outweigh the risks....and since ur CINE is fine and u do not have more issues looming bcuz of blockage, TC, PTC, or a syrinx...this is the best thing for u at this time.

So unless u develop new symptoms this is the best plan for u.

I pray the Neuro-optha can offer something that helps : )
Keep us posted

"selma"