pulsatile tinnitus

[cfinniss]

do any of you guys suffer with pulsatile tinnitus? i had my decompression in 09 and most symptoms are back but the pulsatile tinnitus came after the surgery and it drives me crazy.  i have read that ICP can cause this but do not know weather to press my ns to check my ICP or not?

[cfinniss]

thank you for all your help and taking the time to answer my questions.

i just got so depressed after my last visit to cleveland clinic I did not want to see doctors, just feel they do not know all the symptoms that are related to Chiari.

have a blessed day
Cathy

[selmaS]

Yes, none of the NS at TCI work with insurance...the NL do....that is y when I went for my post op I only saw the NL,..I figured if there was a problem I would see the NS, but otherwise, I could not afford to.....but, I did see him for the first visit and the follow ups as it all is the same visit....but it was five hundred and something to see the NS...I did not have Dr B as my NS, but he was in the OR doing doplar mapping.....

Do a fund raiser to get what u need for the NS...and then the NL is just ur co-pay what ever ur insurance is....mine was $35.00....

[cfinniss]

i actually did contact TCI in Long Island and wanted to find out if Dr. B participated wtih my insurance and they said Dr. B does not participate with any insuance.  the institute participates with my insurance so that would be covered but my visit with Dr. B would not be covered.  so i am trying to decide on that...

[selmaS]

Well I feel u need a complete check up.....and right now, TCI is under a lot of snow.....keep that in mind with the coming weeks that this weather may keep pounding them up there.

I wish I could give u more answers....all I know , if it were me, I would want more testing to know what is going on...and then I would check out a few really good drs and go with my gut.

TCI does have a place called Variety House if u do go there and need overnight accommodations....it is not far from their office and is  pretty cheap...u need to ask for the info with the person that schedules ur appointment.

I know WI has a place as well called Kathy's House.....

I hope u r able to get to a dr that is able to figure out what is going on so u feel better soon.

"selma"

[cfinniss]

i am considering going to the TCI in long island...i asked my NS about having a thorasic spine MRI to rule out Syrinx but he said i do not have symptoms of Syrinx so he did not order it for me even though i told him i have tingling down my spine and other symptoms that i thought would be a sign.

i also saw a urinary doc and had test for neurogenic bladder and he said tests shows i do not have that.  

my NS and NL did not feel i need further tests to rule out TC

I did the TC questioneer and had most of the symptoms of a TC that is another reason i am considering making appt. at Long Island TCI

[selmaS]

Hi Cathy...I am not sure what I would do in ur position, but u really need to know what is going on....mayb a MRI of ur thoracic to rule out a syrinx there...and were u checked for EDS?...sorry I do not remember...but, sounds like scar tissue may be the cause of the second obstruction after the eye surgery...just a thought....

Plus, tethered cord does not always show on a MRI and is y is is referred to as occulta tethered cord...occulta meaning hidden,did u have the urodynamics testing on ur bladder?....and did u complete a questionnaire on TC?
The other indications r sacral dimples, elongated brain stems, and the conus ending further down than "normal".....

It is possible u have ICP, but u can have so many other issues going on too.May I ask y u did not try TCI since u r in NY?...is it too far...I am not sure what part of NY u r in...Ohio may b  closer and I understand that.....what about the drs in Pittsburgh , PA....there r a few chiari Drs out there, plus one from there just went to Ohio....in fact if u look on the left activity bar for Dr visits his name is there, mayb he can help u..Daniel M Prevedello, MD.

What I would say is u need a through check up .

"selma"