Saw neuro today

[AKC_75]

Ok I saw the neurologist today. I have CM 1 w/syrinx. 5cm.

He doesnt want to discuss surgery right now cause my main complaint is migraines. I have only had walking problems 3 times.

He looked at my chart and he said my MD had not really tried a wide variety of meds for migraines, he's just been changing dosages of the same meds I've been on for yrs & yrs.

He said later if the migraines dont get better....or if my balance gets worse, we could talk about surgery then.

[selmaS]

  Hi we did compile our own list and it is posted here in our Health Pages...no need to go elsewhere...as we did find many Drs on it that no longer are in practice or are true Chiari specialists....

  But I do agree we should get more then one opinion so not only is the Dr well informed and experienced, but someone we trust and have confidence in.

[CM2002]

I agree. You need to find another doctor, one that specializes in CM or has vast experience in it. There is a website somewhere that lists these types of physicians. I wouldn't rely on the opinion of one doctor.

[selmaS]

  Well not being a Dr I really can not argue with his decision, but as a fellow Chiarian I would strongly suggest u get the opinion of a Chiari specialist....JMHO

[AKC_75]

Oh ok. Thanks.

I already have severe nerve damage due to the Spina Bifida. Perhaps he doesn't feel the Chiari can do much worse.

[selmaS]

  Having a syrinx is known as Syringomyelia, and is a cyst like cavity that fills with CSF when there is an obstruction to flow...the syrinx can grow very slowly or rapidly....depending on the size the cyst can compress the nerves in the spine that are in close proximity to the syrinx.

Left untreated for a prolonged period can lead to perm nerve damage, which is y so many of us have surgery..it is to keep the flow of CSF going and help prevent the formation of a syrinx....usually those with a syrinx require surgery....those with out one it will depend on if u have an obstruction and what other symptoms u experience.

[AKC_75]

What exactly is a syrinx?

[AKC_75]

Yeah I am sure he's not.

And part of problem is my own ignorance as well, it seems.

[selmaS]

  Sorry 2 forms of what....?

A syrinx can form at ne level in the spine....cervical, thoracic or lumbar spine......most Drs look only in the cervical spine as most that occur after an injury occur in the cervical spine which is the weakest area of the spine.

Tethered cord is diff from a syrinx....and that too can occur ne where in the spine if there is scar tissue from a surgery, but most do form in the lumbar spine.

The confusion could be that the Dr u r seeing may not be a true Chiari specialist.....there are many NS's that will treat it, but do not focus their practice on and around Chiari and related conditions.

[AKC_75]

Maybe I am confused. I thought there was 2 forms Syrinx, being at base of skull.....and Tethered, being at bottom of spine?? All I know is he said mine was at base of skull and the tonsils "barely hang down". And I know the MRI said 5 cm. So, does that not mean mine is Chiari 1 with syrinx of 5 cm?

Neuro said Chiari 1...I read ppl with Spina Bifida usually have Chiari 2....so, confused about that too.

[selmaS]

  Good...do u know if flow was obstructed? Since u do have a syrinx I am assuming u do.

[AKC_75]

Ok, yes it was a CINE MRI.

[selmaS]

  A CINE MRI is a MRI done in 2 parts.....the first stage is just like a reg MRI....then u are brought out of the tube and they inject a contrast dye and use a clip on ur finger to monitor ur BP....a CINE MRI is diff from a reg MRI in that it is not a still pic, it is a moving pic so they can see how the cerebral tonsils pulsate with ur BP and can obstruct CSF flow.

U will want to get in touch with a true Chiari specialist as they know all the testing to do and related conditions to rule out.

[AKC_75]

I don't know what CINE MRI is. I know my MRI was of my head and neck, then of my lower back. That is what my MD said he wanted when he sent me...past that, I know nothing about MRIs.

The diagnoses that I have thus far are:
Spina Bifida ~ Hydrocephalus
IBS
Insulin Resistance
Panic Disorder (I have trouble breathing.)
Vertigo
Hypo tension
Migraines
TMJ Syndrome
Acid Reflux

This Neurologist does not appear to be a Chiari specialist....from what I have read on this chat board alone. Yes, I am frustrated. He is adamant that my migraines are not related to the Chiari. I have only had trouble with my legs 3 times in a 2 month time period.
What he said today was that there was no surgeon that would do the surgery without trying to adjust meds first since migraines was my primary complaint. He said if later we cannot get migraines under control OR I start having more trouble walking, we would revisit the surgery option.

[selmaS]

  Hi......a Syrinx indicates u have a CSF obstruction...I had surgery to help prevent a syrinx from forming...not sure y if u have one surgery is not something to consider now?

Did u have a CINE MRI or  a MRI of the thoracic and lumbar spine? Rule out tethered cord, ICP, POTS, sleep apnea, ehlers-danlos?