Chiari confusion

[frank789]

A few days ago I had a MRI done because I had a pretty severe headache for about 3 weeks and was feeling lightheaded and nauseous the day I went to the ER and had the MRI done. Diagnosis was type 1 Chiari, 4-5mm w/o syrinx. But now for the past two days I've had tingling and pain come and go throughout my limbs. I went to the ER again this morning and a different doctor reviewed my MRI. I was very concerned about the new tingling and pain. He said my cerebrospinal fluid was flowing fine without any obstructions and that the tingling and pain was due to something else? How is that possible? I am meeting with a neurologist tomorrow.

[selmaS]

Please keep us posted as to where u r with the PT and the surgery.

"selma"

[frank789]

Yup, decompression surgery would be the one.

[selmaS]

I totally understand how u r feeling...I too am asking questions in order to get my surgery scheduled.....it will be for the tethered cord release.

It is so odd, bcuz when I was first dx with chiari...that was it.....and the drs I saw did not seem to care to look further and could not help...they said the symptoms were not from chiari.....blah blah blah

I did my own research and talked wiwth chiari drs thru e-mail and was given advice on what I might do next...it helped me to find I also have tethered cord.....

I knew the chiari drs were the ones I needed to see and I am now adding new dx's to my list...EDS, cranial instability and found I am a surigal candidate for 3 of my conditions.

It is a relief to tak to a dr that understands and is willing to help us understand what is going on ...especially since most of us have been wondering for yrs what the problem was.

Are u considering the decompression surgery?......

[frank789]

If PT does not help I would want surgery ASAP. I am starting to get anxious about all this. I am getting a little tired of meeting with so many doctors and other professionals all trying to figure out what is wrong with me.

[selmaS]

Well, at least he didn't just rush u into surgery and is making sure that it is not something else ot that PT can help.....how do u feel with all this?

I know Dr Oro does accept insurance and this is typical of drs who do bcuz they must get the ok from the ins comp and show they did try other methods.....especially if it is not so cut and dry.

"selma"

[frank789]

He basically said it was up to me. He said he would be happy to see me this summer but did not schedule any other appointments. If physical therapy is unsuccessful and my symptoms stay the same or get worse, I need to see him again.  

[selmaS]

Hi...I am glad that u r getting some improvement.

May I ask if he is going to monitor u?...Did he give ne other advice or suggestions?

"selma"

[frank789]

So I met with Dr. Oro and had a couple more MRIs done, including a CINE MRI. After meeting with me and looking at my MRIs he didn't think any of my symptoms were due to my Chiari. He instead diagnosed me Occipital Neuralgia which would explain my headaches and nausea. I have been going to physical therapy for over a week now and I am starting to see some improvement, but I still sometimes feel tingling sensations on my right side?

[selmaS]

....well I know what u mean in that respect, but u have to keep in mind that chiari is congenital and u may have had symptoms that cycled and sinde u were not dx'd ...it was a diff thing to pinpoint.

Give urself credit for knowing ur body......it may be possible that it is all related.

I pray ur next app goes well...keep us posted.

"selma"

[frank789]

I just made an appointment with him a month from now. I hope my symptoms stay the same or get better until then.

The reason I think I am a hypochondriac is because I have thought I've had so many other crazy things before and always tested negative and I worry about my health all the time.

[selmaS]

Hi......it is good that u do not have a syrinx or TC show up on the MRI's, however from what have u made the decesion that u r a hypocondriac?

Most of us are made to feel we r a hypo bcuz the drs do not agree that the symptoms could possibly be from the chiari....or b4 the chiari was dx they had no idea what could be causing ur issues.

Dr Oro is a great idea to go next...if ur chiari is not an issue at this time he will tell u and he will continue to have it monitored.

Godspeed
"selma"

[frank789]

I had a MRI done of my neck and lumbar yesterday. No signs of syrinx or TCS. Neurologist said that my symptoms are probably due to stress and anxiety which could be since I am a hypochondriac. I guess I should try to get in contact with Dr. Oro for a second opinion.  

[marileew]

Hi there,

I get terrible headaches and I have a lot of the symptoms of chiari... and a 12mm herniation with crowding and pressure on my spine. But... the neurologists say that it couldn't possibly be causing any of my symptoms. I think that it's common for doctors to say that. I'd suggest what others have suggested... see a chiari specialist. Who knows, might not be the cause of either of our problems... but, I'd still say that going to see a chiari specialist is the way to go. I can't at the moment because I don't live near one, but I might travel to one soon.

[frank789]

Thanks, I'll request to have that done tomorrow.

[selmaS]

U r lucky to be so close to Dr Oro...he is one of the best.

No for TC u would need need a MRI of the thoracic or lumbar to dx.

[frank789]

I live in Colorado so The Chiari Care Center is only a few hours away. I am not sure about a tethered cord, would that have shown up on a normal MRI of the head and neck?

[selmaS]

HI and welcome to the forum.
Some drs do not consider chiari with a herniation of 5mm or less to be asymptomatic.

U will need to see a chiari specialist...they focus their paractice on chiari and related conditions.This will most likely be a very frustrating time until u find the right dr.

U mentioned that u do not have a syrinx...do u know if u have tethered cord?

A NL is not who u need...hopefully the one u see tomorrow will direct u to a NS.

Let us know where u live so we may suggest drs for u to research.

"selma"