Well ... crap

[lydelia]

Well, after seeing a neurologist that blew me off, I went to see Dr. Joseph Cheng at Vanderbuilt University in Tennessee, and he took a look at my MRI's and told me that the Chiari was most likely causing the symptoms I am having (which was good to hear I suppose) and then scheduled me for a CINE MRI to see if I am blocked enough to need surgery right away or if it is something that can wait. He is a Chiari specialist, and the only one really any where near my area. He is very nice and seems knowledgeable, as does his staff. When I mentioned feeling like I had been blown off to his nurse, she just smiled and said 'That happens with Chiari because of the wide range of symptoms'. I was like, 'THANK YOU!'. lol

Now that I am done singing his praises, I have a little bitching to do. One thing I asked was, how do I keep this from getting worse, and I am sure all of you know the answer to that .... no valsalva maneuvers. Crap. I have always been into martial arts, and lately into Gracie Jiu-jitsu.... so I guess now that is out the window. (Being thrown, and choked is apparently not good for this thing, lol). While it makes me upset that I have to give up this hobby, the thing that bothers me the most, I guess, are the things that I am going to have to do to adjust the rest of my life. He pretty much said that if I continued on the road I was on, that I would, more than likely be looking at surgery. He said to avoid straining, lifting heavy things, pushing heavy things, ect. Double crapola. I work in a factory and lifting heavy things, and straining and all of that is part of what I do every day. BLAH!!!!! I can get around some of it, but some if it, there is no getting around.

So tell me, ladies and gentlemen, what are some examples of valsalva maneuvers? How much weight can you lift? Does it depend on the person's ability? I could not find the answer's to this anywhere. What I am trying to figure out, I guess, are the limits of what I can and cannot do, so that I can know whether I need to get a department transfer at my job or what.    

I hate all of this.

Thanks guys.

[zygy2]

I agree with Selma, everyone is very different.  That is what makes Chiari so confusing.  Different symptoms, different everything!!!  For me, by the time I got to a NS that was helping, I could not do anything without the cough headache pains with valsalva maneuvers.  I mean EVERYTHING... couldn't go to the bathroom, even peeing gave me head pains!  Lifting, bending, stretching, sex, coughing, laughing.. it was horrible.  I couldn't play a simple game with my kids, this was the reason I wanted surgery!  To laugh again.  It was easy to give things up for a bit because I knew I did not want to make things worse.  It was frustrating but not as frustrating as it would have been if I caused damage that could not be reversed.  I loved your posting title :)  very nice!!!  I am amazed how many of us have talked about the NL that wouldn't listen... over and over and over we see it on here but at some point you would think they would start to learn about Chiari????

[lydelia]

Thanks selma. I just happened across that page right a minute or so ago. Yeah, I will get the description for my job and talk to my neurologist when I get back in to see him. This is just so frickin' inconvenient. I am normally such an independent person, that having to pull myself back from all of this stuff, just really gripes me.

Thanks for the information.

[selmaS]

  Hi...yes, welcome to the reality of chiari...here is our Health Page we compiled of things to avoid with chiari and syringomyelia......

http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

As for what each person can do, if u can feel a twinge or pain doing it, it is too heavy...for the longest time I could not lift a gallon of milk...I also could not carry things when climbing the stairs...not sure y, even if it was not too heavy....

I guess the answer lies in how bad the obstruction is...if mine was worse than someone else's I would have more diff lifting and doing activities that that other person...so it all depends, the more of an obstruction the more compression and possible nerve impingement u could have as well...so it all plays into it...it is not a cookie cutter condition , with easy to dx or recognize issues and y it is so often overlooked or ignored by so many drs.

Look in to the ADA for ur job and employer....that should be able to help u...talk to ur Dr about that too.....

  "selma"