Chiari Symptoms / Pregnancy

[Concerned Gal]

Hi,

I know you regularly get these questions but i'm interested in getting some advice.

I was diagnosed with a Chiari malformation (7mm) last May. It was at the time they also diagnosed that I had a significant csf leak (through MRI with contrast and a myelogram). I had three blood patches and am not suffering as much as I was previously. However I'm wondering whether the current symptoms I'm experiencing are Chiari, or from the leak. I'm a regular on the csf board, but have posted here a couple of times.

In particular, I have a strong pushing sensation at the back of my throat (back to front) that feels like it's pressing on my gag reflex (not in throat, but behind). It's not painful, hasn't yet given me any problems with swallowing but it feels uncomfortable and that it technically could restrict my swallowing. I also have a grabbing sensation/tingling on the left side of my neck (always left). It can get very uncomfortable. When I was really bad with the leak, I did have a similar throat problem (ie felt like I was being strangled to the point that I would drop to the ground to avoid what felt like was going to break my neck), but that was must more severe and went as soon as i lay down (within seconds/minutes). Now the lesser sensation hangs around for ages after I lie down. I don't remember the constant neck tingling/grabbing on the left from previous. Feels like it could be something (Chiari) pushing on neck nerves/muscles. Any ideas?

Personally I think I had the Chiari prior to the leak (my aunt has Chiari). I think my leak was caused by a bad massage/physio appointment that aggravated the chiari and created the leak.

Also, anyone have any experience with Chiari and pregnancy? I'm 25 and hopefully will become pregnant one day so would like some advice (whether symptoms increased etc?, any suggestions?).

Thanks

[LIZARD]

Have you seen a neurosurgeon yet? If not, I would do that ASAP, and be sure to see one who has good Chiari experience. Check the following sites for help:

www.ASAP.org
www.chiarione.org
www.conquerchiari.org
www.WACMA.com

You might find that getting decompressed will be helpful (and possibly even necessary) before you take on pregnancy. My son is the one here with ACM, but I have always had hydrocephalus, and I know first-hand how important it is to have optimal neuro health at anytime, but especially during preg.

Also, make sure to see a high-risk OB/GYN who is willing to stay in very close touch with your nsg and do exactly as s/he says.


Good luck!

LIZARD :)

[Concerned Gal]

Thanks for your reply. I have a neurosurgeon but they seem to think i'm symptomatic from the leak, and the chiari is a result of the leak. However I'm not convinced that is the case.

They won't do decompression surgery if you have any sign of a leak as the decompression will just provide a bigger funnel for the cerebellum to be pulled down.

so, at the moment they won't do anything for the leak because it has improved after last blood patch (but it's confirmed that it's still there) and can't do anything for chiari because of the leak.
Sigh.

[LIZARD]

(((((((((((Hugs))))))))))))). :(

That sucks. :( I would get another opinion. In any case, it's not advisable to get preg with such symptoms. You should see a nsg who has a great deal of experience with ACM. Check out those sites I gave you. You should be able to get a good recommendation from them.

Also, you have plenty of time. :) Don't feel like you have to worry about having a baby next week. Take care of this first.


Good luck...

LIZARD :)

[Concerned Gal]

Thanks for your response.

Just out of interest for others, I'm posting an interesting article I just read at

http://www.asap.org/articles/main.html

"In our series with these 6 patients, we had no patients who reported significant increase in symptoms during and after delivery. We had no complications of epidural anesthesia as related to Chiari. Now that’s not to say patients didn’t have a wet tap and have to have a blood patch afterwards. These are symptoms related directly to Chiari, whether they had previous surgery or not. "

"So this was an encouraging study I found because first it was the largest case study I could find, 12 women. And it showed that there was either no new development of symptoms or worsening of symptoms and certainly no complications reported either during pregnancy or during delivery. "


I think I've just decided to wait it out and see what the world throws at me. As I'm not a surgical candidate at the moment, I guess I have no other choice. And I figure that apparently Chiari malformation is pretty common (people just don't know they have it in the first place) so there are women who have carried babies while they have chiari.

All the best everyone