Should I see a specialist?

I was diagnosed with Chiari after having an MRI because of a hearing loss. My ENT sent me to a neurosurgeon who ordered a spinal MRI. I just had a consultation with the neurosurgeon who said that my spinal fluid looked normal, and my symptoms (dizziness, near blackouts, hearing loss, balance issues, etc.) were not caused by the Chiari.

I've read many stories on line of people who were told the same thing, but then went to a specialist and had the decompression surgery. Is the spinal MRI a conclusive test, or should I take my MRI to a specialist to review?

Hi Joy VB,

A Neurosurgeon is a specialist, although, not necessarily one with that specializes in treating Chiari Malformation.

Chiari Malformations CAN cause all the symptoms you mentioned, but so can other conditions.

What did your Neurosurgeon feel was the problem (s), and what did he/she say that you should do next?

Pam

Please, see the most specialized NS you are able too. :slight_smile:

The PA for the neurosurgeon (I never did see the NS) said that she thought it was due to tension - which I DO have a lot of in my shoulders and neck. And she thinks I may have carpal tunnel causing my hands to go numb. I've just read so many comments a general neurosurgeons often don't understand Chiari well enough, so it makes me wonder. No ideas on the reason for my hearing loss.

aktrek said:

Hi Joy VB,

A Neurosurgeon is a specialist, although, not necessarily one with that specializes in treating Chiari Malformation.

Chiari Malformations CAN cause all the symptoms you mentioned, but so can other conditions.

What did your Neurosurgeon feel was the problem (s), and what did he/she say that you should do next?

Pam

Joy VB,

Seems like we all have so many more questions about our medical issues than the doctors have answers for.

I also have hearing loss, and it started around the age of 8 for me. (only in left ear) Often, I feel like I am underwater, and somewhere during the day, usually in the late afternoon, my ears will pop, and then I start hearing better. For my hearing loss/blocked issue, they suspect a spinal CSF leak. I have had a cranial CSF leak before.

One thing my surgeon suggested, that really helped me during consultations with physicians, was to keep a daily diary of my symptoms, including the time of day that each one appeared.(including the duration of the problem) What, if anything relieved the problem.

The surgeon stated that the diary was a big help in diagnosis process for him. Often, things do not show up in testing, but in fact, does not mean that you do not have an issue present. My first syrinx did not show on MRI, but was seen during surgery.

I have a general Neurosurgeon, who specializes in CSF leaks, and Chiari Malformation. He does not limit his practice to these two things, but is experiences in them. I would not rule out a general surgeon altogether. For me, I felt comfortable with the fact that he had performed over 200 decompression surgeries. (that was in 2009)

I was advised to be prepared when seeing any physician, and to ask, ask, ask, as many questions that you feel you need to.

If you do not feel understood, or questions are not welcomed by a MD, then, you have no obligation to continue with that person.

I know there is a lot to absorb after being diagnosed, it just takes time.

Seems like a lot of folks on this site have good information to impart, just keep searching and asking questions.

Take care,

Pam

Joy VB:

oops! When I stated I would not rule out a general surgeon, I meant a general Neurosurgeon.

Pam

aktrek said:

Joy VB,

Seems like we all have so many more questions about our medical issues than the doctors have answers for.

I also have hearing loss, and it started around the age of 8 for me. (only in left ear) Often, I feel like I am underwater, and somewhere during the day, usually in the late afternoon, my ears will pop, and then I start hearing better. For my hearing loss/blocked issue, they suspect a spinal CSF leak. I have had a cranial CSF leak before.

One thing my surgeon suggested, that really helped me during consultations with physicians, was to keep a daily diary of my symptoms, including the time of day that each one appeared.(including the duration of the problem) What, if anything relieved the problem.

The surgeon stated that the diary was a big help in diagnosis process for him. Often, things do not show up in testing, but in fact, does not mean that you do not have an issue present. My first syrinx did not show on MRI, but was seen during surgery.

I have a general Neurosurgeon, who specializes in CSF leaks, and Chiari Malformation. He does not limit his practice to these two things, but is experiences in them. I would not rule out a general surgeon altogether. For me, I felt comfortable with the fact that he had performed over 200 decompression surgeries. (that was in 2009)

I was advised to be prepared when seeing any physician, and to ask, ask, ask, as many questions that you feel you need to.

If you do not feel understood, or questions are not welcomed by a MD, then, you have no obligation to continue with that person.

I know there is a lot to absorb after being diagnosed, it just takes time.

Seems like a lot of folks on this site have good information to impart, just keep searching and asking questions.

Take care,

Pam

Did they do a CINE MRI to measure spinal fluid flow or just a regular MRI? If he didn't order a CINE then I would find a specialist for sure. Honestly though it's always best to get a 2nd opinion regardless!