Newly Dx in VA

Question

Hi. I was just recently diagnosed via MRI. Have had some other imaging studies ordered and have been referred to a local NS but would like to see someone who specializes in it, not just knows about it. I looked at the list and don't see any doctors in VA. Does anyone happen to know if there are any out here or if there is another resource I can look into to see if I can find one? I looked at those in neighboring states, but they are several hours away. Not very ideal for a newly diagnosed patient who may need surgery and frequent visits :(

Thanks

selmaS · Answer

Hi, I didn't think u were trying to put blame it was my may of expressing my thoughts,,,not a good job I guess,,,,but some radiologists only report on what they r told to look for, so cut and dry.,,,no other findings...so strange.

 I had a few tests that once I got a hold of them said further testing by discretion of the Dr...and the Dr I saw did not see a need to follow up....ugh

 As they say Drs practice medicine and they still have yet to get it right....but we r the guinea pigs..

 But see I didn't know, just knew my neck always hurt so that is the only reason PT stayed away...I always had a stiff sore neck, I turned like a robot very stiff...so they did not want to touch that area....

 And this could be a blessing in disguise as now u know....??

Lifesvr7 · Answer

I got copies as mentioned in my other post as well as copies of any other CT OR MRI I had of head, neck or back since 2007. I don't remember getting any before that. 

I by no means blame the PT people. I'm just trying to figure out how it could have been missed on two head CTs. I know they are not as good as MRI, but is there seriously any way that two CT could be read as completely normal in someone with Chiari? Even as a nurse, I have not looked at many CTs so I'm just guessing but would think they should have AT LEAST noticed something was off even if they didn't know what, they could have recommended another study or something. Can a CT seriously not show ANY sign of Chiari or anything (not even a bony abnormality) when my defect apparently isn't borderline or anything? Like you, had I known, I could have directed PT away from the neck.

selmaS · Answer

Did u request copies...if so u can have them as soon as 15 mins after they finish with u...call the facility where the studies were done and ask for copies, they will give them to u on a disk....
ALWAYS get copies of MRI's and ALL tests and reports.It will help as u go to other Drs for opinions.

 PT can trigger symptoms especially if they r working on ur neck and shoulder area....I had PT and know it affected me as well....but I knew I had neck issues so they stayed away from  it but some things they asked me to do, I just couldn't.....

 U may have had the issue arise after a cough or sneeze or a bumpy car ride, if it is this bad nething could have triggered it...so looking back will not help...it is congenital...not acquired so there is no way to  account blame or say they were wrong in how they managed ur PT.....

Lifesvr7 · Answer

Can't wait to see the films. I know I can't dwell on the past, but had someone just told me, I may have had a chance if being one if those who get to remain a symptomatic for life. Instead, I think my PT for my back put pressure or something on the Chiari that lead to the rapid onset and progression of symptoms. Just a theory of course but seems too coincidental to me that it all started after some stuff we were doing on my thoracic spine and neck, Clearly, had I known I had an a symptomatic chiari, I would have known what NOT to do and could have guided PT around the issue. Not money hungry, but if there is even a chance this could have been avoided, I think someone needs to be held accountable. Even if its not a monetary issue, if they don't know how to do their job, they shouldn't be doing it. Too many people's lives depend on people that read imaging studies.

 I will climb off my soapbox now...

selmaS · Answer

Oh I know....I was in the tube during my MRI and the radiologist saw mine and stopped with me inside and said lay still we have to call ur Dr....lol...I was there for some time waiting as I was to get another MRI but it took so long to reach my Dr that I had to schedule to come back the next AM and they added a few more MRI's....I was lucky I had a good Radiologist but then saw Drs that said the radiologist was blowing it out of proportions...or something like that...ugh

Lifesvr7 · Answer

Yeah. Just clearly said normal. Medically speaking, how can anyone with an MD after their name not notice if your head is messed up??? Even if they don't know what it is, it should at least make them say, hmm, something's not right here.

selmaS · Answer

I can see u know "normal" may not really mean NORMAL....lol...

 U can not see what u do not understand....lol...

Lifesvr7 · Answer

Thats a very strange symptom to try to explain to a doctor that already thinks you are crazy. Maybe ill save that one for the chiari specialist so they dont try to commit me.who knows, maybe I'm the first documented case of wake apnea :)

Got some of my old records today and CT from 2007 was "normal". Not sure how they didn't notice something. Hopefully I'll get more old records and actual CDs on Friday to see for myself.

selmaS · Answer

I was doing something similar but not swallowing all the water or what ever I was drinking and I was not aware I was holding it in my mouth....very strange indeed....

 Breathing and swallowing are Chiari issues so do let ur Dr know when u find one.....

Lifesvr7 · Answer

Funny you should mention that. This is going to sound weird, but about the same time my symptoms started, I noticed something else weird. I keep noticing myself unconsciously holding my breath. Others have noticed it too. All of a sudden, I just exhale and realize I have been holding my breath without even realizing it. At first I thought it was a subconscious response to being in so much pain, but sometime I find it happening when the pain isn't even that bad. Have you ever heard of such a crazy "symptom" or am I just crazy in general. I seriously don't even realize I'm doing it. It's so weird.

selmaS · Answer

I know not only do we have to research to find a Dr that can help, but we can afford and takes our ins....it stinks....

 But I know u will find what will work for u....deep breaths and remember to exhale : )

Lifesvr7 · Answer

Ugh... Oh yeah, stress free living at its finest. I'm doomed!

selmaS · Answer

Molly has been on a few times.....she is still trying to recover...the last post was that the incision was not healing properly again....so sending prayers out to her.

 Many Chiari specialists do not work with ins...but the NL in the office may as well as the hospital, so much of the surgery is (or was for me) by ins.

 They also have an office of finance to work out payments and such.....u may also be able to appeal to ur ins to cover it all...depends on ur ins but I know a few did this.

I am not rich, and lost ins post op and y I still have more surgeries not done to date...

 Many do fund raisers to help defray costs....u may want to look into that...

Lifesvr7 · Answer

Not sure if Molly is back online or not, but I just called Dr. Hendersons office to discuss scheduling an appointment and they said they are " out of network" and that the initial visit is $595 up front and all other payment is expected at the time of service and then you can try to submit to your insurance. I guess the only insurance they participate with is Medicare. That not only scares me, but will likely prevent me from being able to see him. Even if I had some extra money laying around, I certainly don't have enough for $600 visits and enough to pay for potential brain surgery out of pocket even if it were being partially reimbursed by insurance. How do you guys manage these situations? Maybe being rich should be prerequisite to having Chiari.

selmaS · Answer

No worries, if u need help with navigation let us know, we will help u : )

Lifesvr7 · Answer

Thanks. Just noticed your response. Still getting used to this "community"  and haven't figured out the notifications and such yet.

selmaS · Answer

Molly had surgery yesterday so she may not be able to get back to u...but Dr H's info should be in our list of Drs in the Health pages.http://www.medhelp.org/health_pages/list?cid=186

Lifesvr7 · Answer

Thanks. It's about an hour and a half I think. Do you have his number? Do you know if these specialists usually have waiting lists or take a long time to get an appt?

soccero · Answer

dr henderson is a true specialist hes not in va but hes in chevy chase md i dnt no where in va u live but if u can make it to dr henderson hes great!
molly