Chiari Online Support Group

Terrified!

I have a NS appointment later this week. I’ve become terrified that he will dismiss me because of my weight. Is this a common occurrence and should I be prepared for complete embarrassment rather than treatment options? Sorry to sound so childish, but self esteem already sucks…

As I have seen in CSF.org youtube videos, doctors fimiliar with Chiari take the weight very seriously, since they don't want to preform decompression before every other possible cause is dismissed. I remember them mentioning the weight in multiple lectures. One doctor said, they sometimes do the surgery for weight loss first(I can't remember what it was called- something for the stomach), so that the patient losses weight first( I think it's also supposed to make the decompression surgery safer). I suggest you watch a couple of their lectures here so that you see proof of doctors caring about their patients! :) If this particular doctor doesn't take you seriously, you are not at fault there! You will find a better doctor! They are out there!

Hi there JMJB, I've just welcomed a new member msdirectorlady, who is also concerned about her surplus weight. It got me to thinking about your post. Whilst you're not going to have miracle weightloss between now and seeing your NS this week, how about if you go to that appointment with a plan to lose weight that you can tell him about, wouldn't that have a much more positive impression on him? Fugu mentions barriatric surgery, that is pretty serious and risky "last resort" surgery itself. How's about trying the self-help route first? There are slimming clubs you can join both for in-person group meetings or online.

Here is what I wrote to our new member.

And also investigate how you can start to lose some of your surplus weight - it's difficult, I know as I'm in the middle of doing the same myself, but it's not impossible by making only small changes. I signed up for WeightWatchers online (other slimming organisations are available) so that I have to record my weight weekly but also to have access to their information resources. In terms of food, rather than strictly count WW points I try to keep the majority of my food within their no-count list. I've got better at planning meals and there is no shortage of sites and blogs online with recipe ideas. I've found that having the 'job' of doing this every day helps fight my fatigue and small successes like a nice new meal or a half pound weight loss is motivating and helps keep depression out the door. And something which may help you if standing is a problem, as it is for me, is a good high stool so you can sit to prepare food and cook at the stove.

Why don't the two of you become weightloss buddies? It is much easier with the support of a kind friend to share moral support, food tips and ideas?

So I say go to your NS appointment knowing that your weight is a likely obstacle but have a diet plan to tell him about and turn the consult round in your favour.

Just to clarify- I did not suggest to consider the surgery. I just wanted to point out that there are doctors who will consider the Chiari causing symptoms despite their patients being overweight.