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?

[selmaS]

Great news !!!...whohooooo....

Keep us posted on the next visit and how that goes : )

"selma"

[cfinniss]

saw the eye specialist and thankfully i do not have pressure on my optic nerve.  i called my NS who wants me to see my NL and have a work up done by him.  that appt. is Feb. 7th
thanks for your encouragement and prayers.  i will let you know how it goes.

Cathy

[selmaS]

Good Luck Cathy!!!

"selma"

[cfinniss]

i see eye specialist tomorrow to see if my pressure is up behind my eyes.  i have occular hypertension and they are watching my optic nerve also.  if my pressure is up again then it is a good sign i have ITP besides the other symptoms i have that point to ICP - waking in morning with horrible throbbing headaches that get relieved once i am upright for a while sometimes takes half hour for it to go away once i rise then the pulsatile tinnitus and high ringing in my right ear and the dizziness and naseau.  I called my NS today to let them know i want to be tested for ICP.  i will let you know what happens after dr. visits.
thanks for all your help.

[Braintoobig]

It's so weird because I get those pounding headaches in the morning too when I first get up. And they always go away after being up for about 10 minutes. I can also hear my pulse in my ears when I get those morning pounding headaches.
Geez, all this time I've been making excuses for all these symptoms.
I FINALLY get to see the neurologist tomorrow and still have another two weeks before the NS.

[selmaS]

Hi...the intra cranial hypertension is sometimes a side effect of the chiari surgery....and some have it b4 they have a herniation and it is the xcess CSF that causes it....

This is one of those dx's that the NS does not like to dx as he is afraid he will get blamed for it...and it is like the chiari...too many drs can not see the zebras in the herds of horses......

The older term pseudo tumor cerebri may be more familiar to most...but it is the same thing...same symptoms....

I hope the book helps, I actually went to a seminar back in the late 70's Bonnie spoke and actually taught us how to use the method...it is something u need someone to do on u...I can not do it on myself.....

Please keep us posted
"selma"

[cfinniss]

thank you for the reference of the book Pain Erasure the Bonnie Prudden - i will check into getting that.  i will try anything that will help with the pain and not have to go on more drugs.

[cfinniss]

thanks for the tip about diamox i will mention it to my docs. i would hate to have to go on yet another drug but this heartbeat in my ears is driving me crazy.  i have had it for over a year now and you think i would get used to it!

[cfinniss]

Selma,
i forgot to mention to you also that besides the pulsatile tinnitus and the waking with the pounding headaches that go away once i sit up of stand up for about 10 minutes i also have ocular hypertension.  all three of these things are signs of intracranial hypertension which can be caused by Chiari and the spinal fluid flow problems.  

the thing i am so upset about is that i have been telling my docs for over a year now about these symptoms and not one of them mentioned it could be intracranial hypertension and that i was not going crazy.  i had to do all the research myself to find out what these symptoms could be caused from.  i just got my answer recently online by searching what could cause pulsatile tinnitus, and severe pounding headaches when i wake up in AM and ocular hypertension and all three symptoms are symptoms of intracranial hypertension.  when i told my docs these symptoms wouldn't you think they would have done tests to see what was causing them and that they might be worried that these are danger signs??!!!

[cozybee]

Not sure if you have tired diamox for the pulsating ring in your ears but it did help a little for me. I had to stop taking it as it has sulfa in it and I am highly allergic and itched for a month after stopping it. But it took the swelling out of everywhere..ringsize,shoesize, and brainsize I guess:) anyhow it did decrease the constant hearing of my own heartbeat in my ear I heard all the time. Now off the diamox it is back ten times as loud!

[selmaS]

there is a book that may help u..it is called Pain Erasure the Bonnie Prudden way...it is  myotherapy  that she uses...it puts pressure on the trigger points like acupuncture, but this is acupressure....with the book u can learn to do this for urself or ur DH can do it for u to avoid the cost of going.....see if it helps.

I am sure there is a connection to ur hyper active reflexes....not sure tho.

"selma"

[cfinniss]

pt was able to help me a lot with the myofcial pain they did what they called a myofacial release technique which is the only thing that has ever helped with the trigger points.  but my insurance will not pay for pain management for them to keep treating me...i do not have hyper mobile joints but i do have very hyper active reflexes not sure if that is anything to do with it...

[selmaS]

Hi Cathy...well myofacial pain is related to trigger point  pain...and since it is from whip lash, u might try PT...they can do work on the muscles with out touching ur neck...to help retrain those mucles...I had this done and it helps...even the lordosis curve was back a little better....but u have to ask to make sure they know and understand they can not manipulate ur neck....but the thoracic part of ur back, ur scapula...they should be able to help.

To check for EDS there r some clinical things they look for, and then u would be sent for some testing...

They look at ur eyes for the Blue sclera.....and check u for hyper mobile joints....there is also a questionnaire ....do u bruise easy, are u slow  to heal...etc....
We have a group on MH for EDS and we have a pic for some of the joints that r hyper...do take a look-http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc

Once they dx u for EDS u go to a rheumatoid dr for further tests and even a geneticist....as there r many types of EDS.

"selma"

[cfinniss]

it is me again sorry to bother you  i forgot to tell you I also have bad myofacial pain with trigger points in my shoulder region.  had it for years from an old whiplash injury.  causes me a lot of chronic pain.  any suggestions?

[cfinniss]

can you tell me how the they check for EDS?

[selmaS]

Well if u have an increase b4 that u should cal ur dr.

I look forward to the updates : )

"selma"

[cfinniss]

i do get another CINE flow study in April and will let my NS know about the pounding headaches when i wake up in morning and the pulsatile tinnitus.

[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"  

[cfinniss]

Thank you for taking the time to write back to me...In Sept. 08I was diagnosed with Chiari 1 (7 mm herniation of tonsils...after my first decompression (craniectomy and lamenectomy of L1) in Jan. 0.9 My worse symptoms went away which included the wicked Chiari Headaches, numbness tingling and burning in feet and legs and hands, very high pitch ringing in right ear, balance problems, slurring of speech and trouble saying what i wanted to say, i knew what i wanted to say but it just would not come out, started having panic attacks, face pain and swelling in jaw line area, tightness in throat, eye problems (but doctors kept telling me the eye problems were thyroid related because i was hyperthyroid with two nodules but had RAI to kill thyroid which then pushed me into hypothyroidism now i am on thyroid med 112 mcg of Levoxyl for the rest of my life). My eye pushed out and down and after my decompression surgery i had to have eye surgery to make my eyes even again so i would not see double.  I had to wear a patch over one eye for a year and then a prism lens so i could see single until the surgery. I also had the naseau on and off dizziness and vertigo on and off. most of the annoying symptoms that everyone else with chiari complain about.  

Well about 3-4 months following surgery my symptoms were mostly all gone then about 3-4 months following surgery little by little the symptoms all started coming back so about 6 mos. after surgery my NS here in Syracuse had me get another MRI and CINE flow study which show there was obstructions again and crowding again at the foreman magenum.  but not as sever as before my first decompression.  My NS and NL here in Syr. then suggested i could have a second decompression to open the dura to make more room but i wanted a second opinion so i asked him to refer me to Dr. Benzell out at Cleveland Clinic  in Ohio.  After an evaluation with Dr. Benzell he felt a second sugery including opening the dura would help me but wanted to wait a few months and check me again wtih another MRI and flow study to see if things got worse.  so we waited another 4 mos. and went back to see him and the MRI showed same as the one 4 mos. previous nothing better nothing worse, still crowding and obstructions but still not as bad as before my first surgery.  So he said i could go either way he could not garentee opening the dura would help me but said he felt it would at least help with the headaches but not a lot of the other symptoms.  He sent me home to consider the surgery and return in another 4 mos with an answer.  So i took 4 mos. in agony trying to decide whether to have it done or not.  my husband finally talked me into it and when we went back again 4 mos later i was ready to tell him to schedule the surgery but i had developed some more symptoms and told him about them, i was having severe dizziness and nausea at the time it was my worse symptom and when i told him that he said i was adding new symptoms and did not feel the surgery would help with most of the symptoms i was having and wanted me to go to their pain rehabilitation clinic for a month to get off pain meds (tramadol and ibuprophen and muscle relaxer) and learn pain management techniques.  i did not go for the evaluation because i cannot afford to live out there for a month.  

So that is my story.  I now have this really bad pulsatile tinnitus and waking with extreme pounding headaches that go away once i am up either sitting or standing so i am worried about ICP because those are symptoms of ICP.  i am afraid to go back to NS with more symptoms because they look at you like your a hypocondriach.  
i never had a thorasic spine MRi just cervical, brain and lumbar- the lumbar was orderedc by my NL because i have a lot of lower back pain and some urinary loss and sudden urges but he said it did not show a tehtered cord.  

do you think i should push my NS for a LP to check ICP?
I appreciate your advice.

Cathy