Can someone help....

[Givenstrength]

I am going to a new NS on the 30th of this month for a "second opinion" (bc my pcp obviously wasn't happy with my last one and neither was I)

Anyways I would really really appreciate any and all advice! What I'm mainly looking for is what all test should be done?? I want to be done right this time and I want to be able to suggest or merely bring up certain tests if this new NS doesn't mention them!

I'm gonna strt with a lil background on me and a list of my symptoms!

Ihave had a brain MRI and a cervical MRI and that's it... Radiologist noted in brain MRI report that I had chiari of 16mm
Month later different building different radiologis and a cervical MRI the radiologist noted in report chiari of 18mm and bulging disc in neck from C4-7 and used words like disc osteophyte complex and stenosis and straightening if natural curvature.

Symptoms.....
For ATLEAST 2 years now my headaches have become DAILY with pain ranging from constant non stop pressure in back of head to severe worse than migrain type headache! Also with my HA I get this hard throbbing when I cough or Ben over or strain or just about with anything nowadays and with that I also here the swooshing in ears whenthe throbbing occurs!

Bad neck pain...mainly on left side which also makes top of left shoulder hurt

Bad back pain constantly! Lower middle but more towards left side

Very weak (I fan squeeze my 7 year olds arm as hard as I can where it's hurting me to squeeze an he says it don't hurt at all and don't even leave red mark! Btw... Done this as a game not out of meanness lol)

Very fatigued all the time! Like worse than when I was pregnant! But of course I have problems falling asleep

Dizziness...when I have a dizzy spell I get real nauseas and my front teeth/gums go numb
...this last dizzy spell I had about a week ago lasted longerthan usual and every since then I have had this really weird pressure near my left temple! If u feel my temples my left is not as sunk in as my right is and to me I can't feel my pulse hardly at all in left temple but can real good in right!

I have tingling and numbness in mainly my arms and hands (both) but also in legs everynow and then

Pain in both feet just out of blue I get hard dullish pain in top feet towards ankles but pretty painful

Shortness of breath

Problems focusing on objects

Blurry/double vision

Front teeth/gums go numb

Very emotional...cry and don't mean to and no reason

Swooshing sound in ears/head mainly when I lay down sounds like it goes along with heartbeat

Muscle spasms/jumping??? Mainly when I try to go to sleep...all of a sudden my leg will jump or my arm and sometimes my whole body but mainly my legs

Prob more but this is all that I can think of right now!

Thanks for reading



Ok so after knowing all that about me what all test should be ran?
What treatments sound reasonable?

[selmaS]

Yes u r right...it does not mean he is a specialist...and the member may no longer be active on here...that is y we always say...research the drs.....

I wish I could tell u more....sorry.

"selma"

[Givenstrength]

This new NS is actually on the list here.... Tim Burson in Little Rock, AR

But that don't mean he's actually a specialist right? Just means a member liked him and put him on the list?

Wish I knew who used him so I could talk to them!

[Givenstrength]

Thanks Hun I really appreciate your responces! I'm actually hoping to NOT "HAVE" to have surgery. I really really don't want it although somedays I feel ready for it just so "hopefully" I can stop hurting!

One reason I didn't like last NL is bc I just felt he wasn't very informed with chiari and I don't feel he done the proper test needed.

And with my last NS... I liked him but then again didn't. He wants me to have the surgery says he feels my case is defenitly severe enough for it but he's leaving the decision up to me on when I want it UNLESS a syrinx forms then he wants to do it right away! So I kind of liked that but there were some things said and responses to my symptoms that made me feel like I knew more than him about chiari just from a months worth of research.

He said he does about 10 decompression surgeries a year... Is that a good number?

Anyways I'm gonna go to the new NS for the 2nd opinion and see how that goes I guess. I just want him to be knowledgeable about it and run all proper test.

[selmaS]

Well...mayb meet this one and compare to the NL that u did like and go from there...I know time is going by, but better to get the right dr then the first one willing to do surgery.....

I know I mentioned this  a few times in the forum, but I went to several NS's b4 I got to the right one......it was more than a yr of looking once I was dx'd.

Hang in there : )

"selma"

[Givenstrength]

I haven't met with this NS... First apt is on the 30th. Thanks Selma

[selmaS]

Do u like the NS?

Some will order testing, but those that do have a NL that works with them.....it is a hard call and sorry one u have to make.

I do not feel I know enuff about what all happened or how u feel about the drs....plus, I do not think ne of us should tell u what to do...we can advise as to what we would do or what is hte best course of action per our experience...u ultimately have to decide.

"selma"

[Givenstrength]

Ok so now I'm bothered by this!! What should I do? Go ahead and go to NS or find new NL? Will/should this NS run these test?

[Givenstrength]

See I didn't think of that! I liked my NL just not the clinic itself... Maybe instead of getting 2nd opinion with NS maybe I should have got 2nd opinion with NL first??? Since they are the main ones that do the testing! Hmmm....

Thanks guys

[selmaS]

Hi...well it depends on how long ago did u have ur other MRI's if they r older than 6 months a good NS will want them redone...so-

Brain MRI w/wo contrast
Cervical MRI
Thoracic MRI
Lumbar MRI
CINE MRI (flow study)

And of course he should do testing like blood labs to rule out other issues as the MRI'S will as well.
Conditions like MS, Lymes, Lupus, etc.....
plus related conditions like syringomyelia, tethered cord, peusdotumor cerebri, sleep apnea, Ehlers-Danlos/Joint Hypermobility....
Thyroid issues....

Now of course the NS will not do all this, but a NL should as they will look at u b4 the NS...they do a gait accessment...and a basic neuro work up.

But, if the right tests r done, things things will be ruled out and dx'd if u have them.

As much time as u r spending to locate a good NS...do the same for a good NL as u will need them for post op care.

Ask the NS if he has a NL he works with that is the best way to find a NL that knows and understands chiari.

Good luck
"selma"

[xmelax35]

Sounds about right - those tests you already had. Maybe a CSF Study Flow would be good. However, all my dr. really needed to see (most recent) was the MRI itself. I know flow study he wants too, but he is mainly looking at my films of the MRI and I am getting ready to have a new CT scan. I think it is all in the NS you go to. I have been to many NS and regular neurologists and they all have different opinions - except the neurolgists - they all feel the same - as though it is nothing to look at...they could care less, just want to prescribe experimental meds or diabetic pain meds etc...

So if you find a good surgeon that is all you need. (a good chiari one as I have learned). I have a lot of those symptoms you have and some more. Anyway, my post might not make sense - head pain tends to give way to my own confusion/concentration. I am sure many others will have better advice for you. :) Good luck.