Scoliosis and chiari

[Stargazerlily95]

Does anyone have scoliosis but not a syrinx?

I have an s curve that’s in my mid and lower back that causes pain but I also have a lot of neck pain. I have only had X-rays on my back and neck and not sure if that would show any syrinx on those. I worry that my drs are missing something but insurance denied having even a csf flow mri of my brain because I had an mri in October so I know getting a spine mri will be hard to get plus getting a dr to do one.

[selmaS]

Hi...sorry I do not have scoliosis or a syrinx, but I was wondering if you have leg issues and bowel issues...if so you may have tethered cord which could have caused the scoliosis.
Sorry your insurance is halting the investigation as to what is going on.....sometimes when you have a change in symptoms they (Dr) may be able to use a different code to get the INS to approve....it really depends on your Drs ability to get around the INS.

[Stargazerlily95]

Only problem I seem to have with my legs is they go numb easily if I sit a certain way to long and it's painful as the feeling comes back but I think that's normal. Otherwise only bowel issue would be not being able to go often.

[selmaS]

It's possible if you go to the Dr with your bowel and leg issues they may do a lumbar spine MRI and see if they can detect tethered cord....unfortunately Tethered cord is not always visible on MRI...sometimes it is referred to as occulta tethered cord meaning hidden....so, a MRI may not be conclusive. I know that is not helpful as your Drs do not seem to be able to bypass the insurance, but with a different DX they may be able to get the MRI and at least rule out a syrinx in your lumbar spine.

Numb legs and bowel issues could be tethered cord or  a syrinx....so any information from a MRI could be fruitful for you. Keep us posted what you find out.

[Stargazerlily95]

Thank you I have an appointment next week with a new neurologist so I will keep that in mind.

[selmaS]

Good Luck and do keep us posted on how that appointment goes.

[Stargazerlily95]

Had my appointment yesterday with the neurologist and she said at 4 or 5mm I wouldn't have any symptoms from it so I just have chronic migraines and insomnia said I probably have medication overuse headaches as well. She didn't address any of my other symptoms blamed my neck pain on posture and didn't give anything about the constant tinnitus.

She did give me 3 new medications 2 different preventatives and a sample of nurtec for abortive medication in addition to zolmitriptan I already have so hopefully they can at least help with my pain but otherwise still can't find a Dr who will acknowledge chiari symptoms I have.

[selmaS]

Did you have a CINE MRI? My herniations were not very large in length either...BUT it is not the length that can be the issue but rather the width. If the herniation is long and thin CSF can still flow...short and stubby and it can cork it up and it is the disruption of CSF that causes the symptoms.
It sounds like the Dr was not a true Chiari specialist....or they would have looked further.....and just from my experience  my herniations being approx. the same size as yours, if it wasn't the Chiari causing my issues then why am I doing better post op? What area of the world do you live?
I also want to add that I found that no pain meds helped at all with my Chiari pain....taking pain meds would only cause other issues( side effects and I get them all) but never seemed to be of any benefit.

Next- were ALL related conditions ruled out for you?

[Stargazerlily95]

No I haven't had a cine MRI no neurologist or neurosurgeon I have seen will order it they only care if it's over 5mm. I live in Iowa and have seen the only neurosurgeon who was trained by Dr Mendes supposedly and had written papers on chiari but he had his NP do all the exam and did nothing once he came in except show me multiple images from my original brain MRI and said the fluid looked good so I just needed to find a good "headache" Dr. None of my symptoms had anything to do with my chiari.

I haven't had any other tests done because they all label me with migraines and don't care about the other problems I have. But if it says anything I am 27 and my husband is 54 and he doesn't even trust me to drive anymore because of my symptoms with my eyes lately and other pains. Normal pain meds haven't worked for me in the past but I'm trying the news ones for a little while so far no crazy symptom luckily.

[selmaS]

I am not sure who Dr Mendes is.....or do you mean Dr Arnold Menzes?
Is Dr Menzes no longer practicing? He is from Iowa......he also was one of the top Drs to speak on cervical cranial instability....a condition many with Chiari get in addition.....I remember him speaking in 2018 and described it like a pumpkin sitting on top of a toothpick....very unstable, wobblily and slowly dropping down onto the toothpick causing many issues/symptoms.

I was told my issues were migraines since I was in high school and even sent to a shrink,,,,but back then MRI's were not done to even investigate a possible cause of the pain.....

I am so sorry you are dealing with this, but if it may help, most of us with Chiari have had this problem with Drs during our journey as well...keep researching Drs and pushing for answers.