QUESTION OF THE MONTH ~~~ Nov. 2013

[selmaS]

Hi All.....I have a question for u ....

Which symptom do you have from Chiari or a related condition that you never considered a symptom b4 you learned about ur DX and Chiari?

[selmaS]

  Hi, my GERD/acid reflux symptoms are ever changing and GERD is something many with Chiari deal with.

Bcuz of bloating, it is possible to affect the vagus nerve which can cause heart palps and was the issue for me, as I also went to get my heart checked out too....I also have a hiatal hernia which can cause shortness of breath....and I have always had breathing issues. At age 7 I had my tonsils and adenoids removed....no improvement....I do however, see improvement post op from my decompression surgery, no more heart palps, and my breathing is better, I continue with GERD issues from time to time as I have modified my diet to help reduce the meds to keep it calm.

[FlowerGirl123]

Headaches, that felt like my head was on fire.. as if my scalp was moving.. and being overly tired. No matter how much sleep I got, it never seemed to be enough. I had a hard time waking up in the mornings, which just got written off as "teenager syndrome".

When I was finally diagnosed, it was like "wow.. that explains a lot". And, now post op a little over 10 years.. and I still have all the same issues.

[bean418]

Funny you should say that !  

My neck incident occured and since then I have never had a "normal" EKG.  It actually landed me in ER two weeks after incident in which they kept me for 3 days on holter monitor and stress testing (and loads of other testing).  

The conclusion was....we have no idea.  Your heartbeat is not textbook normal but must just be normal for you.  Probably a virus...lol....Have been sent back to Cardiology 4 more times.

Everything is pegged as a virus anymore.

[AZHR]

My preop EKG was so abnormal they would not clear w/o a nuclear stress test.  Turned out my heart is fine.  No explanation for EKG.  

[bean418]

Thanks for response.  Interestingly enough, I went to cardiologist for echocardiogram and she thinks she has solved the puzzle.....acid reflux.

Can you tell me the symptoms you experience with Acid Reflux.  I just find it hard to believe that acid reflux would cause shortness of breath, weakness, shakiness and jitteriness.  Also have burning sensation in thighs...although it is cold out this is abnormal.  Had this years ago but was then dx with B12 def. and my level currently is very high....so, not it.

[selmaS]

  Yes I do, have had it  for yrs long b4 I got my Chiari DX.

[AZHR]

Biting my tongue severely in my sleep.  Not grinding, but a hard slamming.  I was aware of it only twice & it was fierce.

[naybeam]

A lovely buzzing/vibration in the back of my head. Almost like one of those toys that you pull the string and it buzzes around the place. Thankfully not bugs in my skull :P

[bean418]

Cleared with a new EKG and echocardiogram....woohooooo.....if I didn't have a heart attack, that sure could have given me one.  

Do you have Acid Reflux or GERD ?

[selmaS]

  Well that is of some concern....goodness....u would think the cardio Dr would know?? hmmmm

[bean418]

Oh yes it is.  Every specialist I see (ENT, Endo, etc.) all tell me I need a cardiologist.  Had EKG done recently and as always it says Abnormal but this one said Anterior Infarct.  Ummmm....that is a heart attack.  Took it to the Cardio's office and they said don't worry about it....sure hope they are right !

[selmaS]

   I know !! so frustrating, I too had heart palps....and had to see a cardiologist....crazy how Chiari affects us.

[bean418]

I was not aware until recently that the irregular heartbeat (short PR syndrome) can most definitely be related to Chiari !  

To think all the Cardiologists couldn't imagine what it was from.  It took a NS to tell me :-)

[selmaS]

I had the same issue....but it was bcuz of swim class, they wanted us to wear flippers on our feet and go into deep water, my feet would cramp up as well as my legs, so I had a Drs note...had no idea y they did that...but, I had a note and the swim coach still made me redo the class just sitting there or he was going to fail me....ugh,....

[velvettn]

I hated gym class too, almost didn't graduate because I didn't have gym credits.  I never thought about it being abnormal when I would fall   off the swings a couple times a month at the park as a kid.  

[selmaS]

  Hi Tina.....it's been a while,....glad to see u back on the forum.

I also have issues with sinus pressure and take a antihistamine b4 bed every night....it helps me not only with the pressure and PND< but I am sleeping so much better.

Glad to hear u r doing better, and I pray u find a way to get rid of that pressure.

[dpulum]

I had spasms in the back of my head when I threw up for my whole life.  Until I had the surgery and it went away, I had no idea that it wasn't normal...it was normal for me. :)

I still have pressure at the base of my skull if I am congested and I have to be careful about what kind of physical activities that i do, but I am doing well.  I had the surgery 4 years ago, along with spinal fusion for cervical stenosis at the same time, I'm so much better, I feel blessed.

[selmaS]

  TCI does have a place that is considerably less then staying at a hotel while u r at the hospital...

ChiariWolf can give u info on CC in Ohio....as he made the rounds there.

I also went to TCI and was well pleased....it was not a 10 hr trip for me more like 3 hrs.,...but all in all it was travel and I agree we all need a true Chiari specialist in order to do well after this procedure.

May I ask do u also have EDS?

[NurseGayle]

I know I guess they think we can't know anything as we are lowly nurses. LOL. I had first surgery 11 yrs ago in Toledo Ohio by the top dog & it was a nightmare. Did an archaic procedure on me. After much pain & despair & him telling me nothing was wrong, I went to CI in NY. Dr B fixed the mess that had been made in my head & also put in a shunt 10 yrs ago. Had neck fusion done at CI 4 yrs ago & was just told had to have it again. Tired of spending a fortune & hubby having to take off so much work to go to NY so looking for a chiari specialist closer to home. Thinking of Dr L at Cleveland Clinic which people mentioned on this site. Will NOT go to anyone who is not a chiari specialist again due to problems in past.

[selmaS]

  Hi and welcome to the Chiari forum.

I want to know y the medical professionals all want to send us for psych consults....I was sent when I was still in HS....ugh...and it took until I was 48 to get a DX.....sad really....

Have u had surgery or are u looking for a Dr?

[frankie_rush]

I have had most of these while grwoing kup and never thought of it.  I even went through the military for 16 1/2 years.  The one symptom that I have had since a kid and it got worse when older was balance.  I learned to compasate for it and would nso pretty good.  Then the scariest was swallowing and choking cause it would happen and any time.  I am glad that 99% of them are gone.  I have one that didn't have before surgery is the pressure on the eyeball.  I still have a balance issue every now and then cause I turn to quickly or raise up to fast.  so for the most part all of mine that left as of young and came back I thought was cause of old age sneaking around.

[NurseGayle]

Wow this is a great reminder of where I was 12 years ago when this all started!  My sx: migraines since childhood; dizziness; poor balance; carpal tunnel- so they thought; leg pain/numb; nausea; stroke-like symptoms like couldn't talk or write or see for 20 minutes at a seminar; toenails fell off often; neck/back pain;  and the weirdest of all I can't look down when I go down stairs or I fall!  We are quite a bunch.  LOL one of my top neurologists said no one could have that many issues I must need a psych consult!  Thank goodness I'm a nurse & knew better.  

[selmaS]

  Hi...I had the same thing but tarsal tunnel surgery....and as it turns out that was not the issue...and that surgery they left something inside my ankle that I required another surgery to remove it....ugh....so 2 needless surgeries all bcuz I had Chiari but no DX at the time....

[Myhorseanniegirl]

What gets me the most is the fact that I've had at least a half a dozen other surgeries on numerous body parts with no relief (for instance-the test for carpal tunnel was negative but had the surgery anyway because dr. Was sure I had it anyway, also two back surgeries, knee, elbow). And now I m finding out that there's a chance all this pain could be from chiari malformation. Having surgery on Nov. 35th, not expecting a miracle but it would be nice.