Symptoms stopped - what actually happened??

[lynnbrook177]

I recently just saw a neurosurgeon as I have a 13mm herniation.  He was very quick to tell me that none of my symptoms were from Chiari as there is no csf blockage or brain compression and I am very relieved, but, of course, still have many unanswered questions as to what has gone on in my body in the last year.  
Up until March/11, I was experiencing headaches in the back of my head/neck and shoulder blade area (which ns said are not chiari and I've read they are), occasional sleep apnea, dry mouth at night, and hot flashes. ALL of these symptoms are gone, since March.  I just want to understand what happened.  Doctors seem too busy to take the time to figure out all the little things.  Has this happened to anyone? I've heard that symptoms can plateau, but what is happening when you have symptoms if there is no blockage???

[selmaS]

  Hi...I also had issues on my left side...could be ur herniation is larger on one side and y that side was affected...and by changing ur position has helped. I know I did not like sitting and turning my head to the left so I sat on the right as well : )

As long as u do not have a CSF obstruction, doing things like compensating is the best way round to deal with the symptoms as most meds do not help.....and surgery is not a sure and at times can cause more issues...so go as long as u can as long as ur herniation is not causing more health issues.,

    "selma"

[lynnbrook177]

Thanks everyone! Your explanations do help me to understand. I am north of Toronto, no Chiari Centre here, but I did see the top doctor, and he is listed on the Chiari list on this forum. He has done hundreds of Chiari surgeries.
I teach piano, not a physical job, but I am left handed and was constantly stretching across my body to point for the kids. I started feeling a strange tightness in my neck along with numbness in left cheek and thought it was muscle related so I moved my entire room around, IN MARCH, and now sit on the right. It is very strange that some of my symptoms stopped after this time. I still experience tingling in my face and neck, fullness and ringing in my ears, and the odd headache. I have never experienced any real pain that many of you describe. Doctor said I also have degenerative discs in my neck that could be causing symptoms - maybe he's right!  Thanks again for your responses!

[Mooseinacanoe]

Could it have been anxiety? A relief and release? Too many things get pawned as anxiety but yours may have been.

[selmaS]

Hi...chiari symptoms can and do cycle...the y of this is not totally understood...but it is believed that when the tonsils or the area surrounding the tonsil herniation gets inflamed then u have a CSF obstruction, and when the inflammation  calms down the CSF flows lessening symptoms.

  What u do, the activities, what u eat, the meds u r on...the weather all can play a role in this.... a true chiari specialist may be better to describe just what is going on...but do enjoy the symptom free time u have and refrain from activities that might trigger a flare up.

      "selma"

  

[jenshead]

First of all, it's absolutely wonderful that your symptoms have stopped!!  Especially for 3 whole months..great!  Here are some questions I have for you and some information:

Is your neurosurgeon a Chiari specialist?  That would be determined by patient recommendations, a large number of Chiari patients, etc.  While your NS could be right, it sounds like he is fitting right in with the typical Chiari run around.  Few doctors understand Chiari very well and will tell you that it is not causing your symptoms.  Remember, doctors are human too...they are not perfect.  

I do not have a CSF blockage but my herniation is effecting the flow of CSF.  A blockage would be more severe, but even diminished flow can cause symptoms.  Your CSF may be perfectly fine, or the doctor may have not thought any "small" issues worth mentioning.  If you are concerned that your prior symptoms may be CM, you may want to get a 2nd opinion and/or read the radiologist's report yourself.

I have not experienced it, but I have heard many others on this forum say their symptoms come and go.  Also, has your lifestyle in any way changed since your symptoms began?  e.g. did you take a desk job because you were in too much pain?  Did you change the way you do certain things to avoid making your symptoms worse?  

I think that's all...I hope your symptoms stay gone!