How much time before PFD surgery

[sixstringing]

Hello to all fellow Chiarians,
Today I feel sad, worried, and anxious because I have been told I will most likely need decompression surgery due to the CSF flow blockage found on a recent MRI. My chiari began incidentally from an MRI back in Jan 09 for dull headaches at the top of my head.

Since then I have been researching this stuff like crazy. Been to uninformed neurologists who think Chiari is nothing. You know, the usual misinformation. However, I insisted on a few tests based on my research.

Hi everyone,

My name is James and I'm a 2 month old Chiarian at age 38.

So, here I am 2 months later with one of the biggest decisions of my life. PFD surgery or wait. The NS (who only does one of these a year on average) stated I would eventually need the surgery, but is comfortable waiting 6 months to re-evaluate if I choose to do so.

Question for you folks, can something get damaged neurologically in my body if I wait too long. For instance, could I lose my hearing or affect my vision, other neurological damage...

My main symptoms are neck pain (diagnosed with mild arthritis from full spinal MRI) and numbness occasionally when sleeping in my hands. Also, not sure if tightness in throat is my Hashimoto's thyroiditis or due to Chiari I.

Looking for insight and any suggestions. I cried my eyes out today, I had been worried for two months and praying it wouldn't come to this, but here I am.

Take care
James

[selmaS]

Hi James,

Well it feels like forever, but I was having tests done here as opposed to up there....and the holidays came in btween causing the results to come late.....so until I gathered everything up and sent it without the reports that never did come...I would say 6 to 8 weeks...and now I have more tests...if I can get them done here I will, otherwise it will be a 2 day event in NY.

Eventho they have MRI's of my complete spine...and an xray of my thoracic spine they want  2 more xrays of my cervical neck and my lumbar. and 3 D Catscans of my head and neck.oh yeah and urodynamic testing on my bladder.Fun!!  : )

I would go with Dr Oro....

U r welcome
"selma"

[sixstringing]

Hi Selma,

Thanks for the salt tip. I have been eating too much salt lately so there is a nice correlation.


As for my spinal MRI, yes it was done in sections and the radiologist was told to look specifically for TCS and syrinx. Both neurologists and a neurosurgeon concluded on mild degenrative arthritis. The NS, however, sends all his Chiari cases for a CSF flow study, which is what put me on the PFD map.

I've called the Chiari Care Center and the Chiari Institute in Wisconsin today. Looks like Dr. Oro will consult long distance.

how long did it take to get in at TCI with Dr.B?

Thanks
James

[selmaS]

Hi James....to help lessen the tinnitus reduce ur salt intake....read all lables it is everywhere!!


There is a Dr Frim in Chicago...not sure if he is still seeing adult patients tho.But his office may be able to refer u to someone else close by.

U do have to go in person....if u vist either web site there r forms u need to fill out.

I just got my call today and will be seen by Dr B in NY on March 30th.

Ur full spine MRI...I assume was done in sections?..like lumbar,thoracic and cervical?And was it done to look for a syrinx and TC?...most radiologists only include in their reports what they were asked to look for.Sometimes a review of the MRI's is needed.

"selma"

[sixstringing]

selmaS and Shane99,

Thanks for the welcome, and yes, I have been playing guitar most of my life :)

Since there isn't a cord syrinx or tethered cord as of Feb 09 full spinal MRI, I feel like I may have a little time here to get a specialist looking into this. Although the symptoms like tinnitus are getting stronger, it sometimes worries me when I feel more symptoms or an increase in the current ones.

Not too many specialists like Dr. B or Dr. Oro here in metro Detroit. Do you guys know one? My current NS only does about 1 of these a year. Not all that comforting for a procedure like this.

How difficult is it to get into Dr. Oro, or TCI? Can I send my MRI's and get a consult over the phone or do I have to go in person?

Thanks a bunch
James

[Shane99]

Hello James. Welcome to the forums. Can I assume you play the guitar? I'm guessing by the name "sixstringing". :)

Try and relax a bit. Yes, this can be very stressful, but the more worked up you get, the bigger chance of headaches.

Chiari is not a life-threatening illness but it can be life-altering. As a general rule, a few months won't cause a big issue, just be aware of your symptoms. If you have a syrinx (spinal fluid blockage), it can cause paralysis, but you'll most likely start noticing an up-swing in symptoms (like tingling in arms, hands, legs or feet) well before any permanent damage occurs.

The most important thing for you right now (as selma mentioned) is to find a specialist. Most doctors (even neurosurgeons) just aren't familiar with Chiari. A lot haven't even heard of it, much less be able to accurately treat or deal with it.

[selmaS]

Hi James and welcome to the chiari forum.

If u have a CSF blockage I suggest u find a chiari specialist that treats chiari and related conditions daily.

It is possible to wait too long and end up with perm damage.It is also possible to have issues with an inexperienced dr.Since u r doing research, do more on the dr u choose.

The Chiari Institute in NY or Dr Oro in CO. these are the top in the field..depending on where u live we may be able to help locate other drs as well...we have a thread here with a list of member's drs.

I can totally relate to how u feel..I also have hashimoto's...not sure about my throat tightening either...just rx'd synthroid so if it goes away I will know it's not the chiari.

I must say u r lucky bcuz I have been trying to get answers for 30 plus yrs and dx last Feb...so its a little over a yr....and I am waiting to hear from TCI in NY....

SInce u had a full spine MRI did they rule out a syrinx and tethered cord?

I hope u bcome a active member to share ur experiences and support.

"selma"