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Four years later

Sep 26, 2013 - 0 comments

My son is now 20 years old. So hard to believe!  He has had some ups and downs with this and for a long time, his symptoms would come and go. Some ER trips to a hospital that is well known for dealing with traumas and unusual diagnosis'.  Unfortunately, they still did not seem to know much about chiari. We were told multiple times that it was a migraine.  

The last trip to that ER (which is about 45 minutes from home, there is closer hospital, but I avoid it) was awful, it was about a year or so ago.   My son called from work, and I think I already wrote an entry about that, balance issues, couldn't find words, was just very "out of it".  Bad pressure headache in back of head.  Diagnosis? Migraine, again. We had to repeatedly spell and explain Chiari, correct information we had already given, and argue with doctors.  They kept saying it isn't chiari, because he had surgery, which fixed it.  They gave a prescription, I call it the migraine cocktail, of meds for his "migraine".  I didn't even bother to fill it.  

It was then I started researching again, and found another specialist in Madison, WI, about a two hour drive for us.  When I called, they were wonderful.  They got him in quickly and the dr took a conservative approach first, and explained that SCAR tissue from the surgery, which included shrinking the cerebellar tonsils, cannot be imaged and could certainly cause these problems. Finally - our feeling that it was chiari related was validated!! i can't begin to tell you how good it felt to have someone talk to you that really understood and didn't look at us like we were crazy !  

He tried a couple things, but what eventually happened was that Dr Iskandar and my son talked about his weight lifting routine.  A modified routine was established, the symptoms of pressure, blinding light and vision loss, balance, and the issues were gone.  Amazing what can happen when someone actually listens!

The one issue that hasn't gone away is his back pain. It has continued to get worse, his pain level is a minimum of 4 at all times, and usually higher. It wakes him from sleep, he has hard time taking a deep breath due to pain, and pain shoots up his spine. He did not have a syrinx at the time of his initial surgery, but as of today, dr ordered another full spine MRI.  He also has had problems with his knees, and still trying to figure that out.  But at least we have a NS we trust and believe in.  I don't know much about syrinx's but dr did say today that it could be that, scar tissue can also cause blockage that could lead to that.  So, I'm back again.

I didn't know at the first surgery that it didn't "fix" it.....I suppose I should have known, but afterwards, I thought "whew, i can breathe again".  I now understand this is a lifetime issue - I wish that the first NS had explained that.  So he has his MRI on 10-1 and sees NS again on 10-3.  I am waiting with baited breath.  I don't know what to think - I hope that it isn't that but if not that, what else could it be?

brief note, more soon

May 18, 2012 - 0 comments

I didn't realize, until I looked at this now, years later that his symptoms started that soon after surgery. They were pretty minimal for awhile, and I think it was 12/2010  that he ended up back in the hospital after he developed a horrible spinal headache after a lumbar puncture. They only had him lay down about 45 minutes, not enough.

Anyway, will update current info soon.


Feb 07, 2010 - 0 comments

first entry...not sure if this is ms or not

Multiple Sclerosis Tracker

Test results and symptoms

Nov 29, 2009 - 3 comments

Well, Wed 11/25, I got a call from NS office. They said that all tests seem to normal and no problems. I asked about current symptoms, and she replied she didn't know but they didn't seem to be from chiari. The doc didn't even bother to call me himself and I felt tossed aside, like well, we did the surgery, we fixed it. There fore, there can be no problems.

I'm glad that the results came back good, that means there is nothing glaringly obvious wrong. However, it also means that something is going on and we don't know what. So, now I will contact Dr C and ask for referral to Dr Frim for second opinion and for consultation.

Last Sat, 11/27, we were at my dad's for Thankgiving. Riley was just sititng there and had Charles come get me. He told me he had numbness, tingling in chest area, and both arms. I told him rest and if any worse, let me know.  He continues to have some headaches, back pain, and flashing lights in his vision.

That's it for tonight.