Sudden worsening in symptoms

[leahley]

So far starters, I was so happy to finally find a Chari malformation forum! Ok, So I was diagnosed in December 2012, after suffering symptoms of blurred vision, short term memory problems, and fatigue. I've had two mri's, the initial mri and one also to check for flow which wasn't too great. Then in January, my husband and I found that we were expecting our 3rd child which meant surgery had to wait, but also since I was able to manage my symptoms with a daily nap and had plenty of energy that surgery was up to me.

Well we welcomed our son in August and due to Chari and it being my 3rd C-section, we decided that we would hold off on having anymore children and decided to go with Mirana IUD.I had also noticed that my initial symptoms had worsened. But I had my IUD placed on 10/11 and by 10/14 I felt so odd. blurred vision, horrible problems with short term memory, leg heaviness, and just felt like a wet mop (sorry for the analogy).

After reading reviews online, I found a lot of women were having the same symptoms with their IUD's So I called my dr. which reassured my that its not my IUD but referred me to a neurologist but can't seem to get in for a month. I feel like im going crazy because I know my symptoms can't have progressed this bad in 3 days!!! I was also taking a diet pill with caffeine which helped with the fatigue and my neurologist informed us caffeine would really help so im not sure if that was working against me. Any insight would be much appreciated!

[selmaS]

  Make sure they test u for ALL the related conditions and u have a well experienced Chiari Dr....

Keep us posted.

[leahley]

Well its been 10 months since I was diagnosed and since I was pregnant they didnt go too far into surgery and to what extent it was. But within the last month, I have noticed my symptoms have gotten worse. I now have started experiencing pain in the back of my head and neck, my blurred vision has gotten worse to the point nothing seems to releave it and my memory is bad so I want to do surgery before it.gets too bad. But.im going.to push tomorrow to get an earlier app. With a neurologist to see wgat our.next step.is since it has seemed to progress a lot.lately

[selmaS]

  I continue to have short term memory issues 4.5 yrs post op.....I find the more  excited I am in responding in a convo I loose words more then if I am just typing a reply here, if u know what I mean....but at times I still loose words in replying here as well....and it may take me time or something to refresh my memory about certain topics, while some do not seem familiar at all....strange as it is very random.

Glad u do not have ne of the related conditions....and u may be different as u r younger then I was when I was DX'd.

[leahley]

Well I had my iud taken out this morning and starting to feel better but the dr. That diagnosed me said we can do another mri to see if.its progressed but I have noticed a change in my memory and trouble finding words so Om.going to see if I can get in any sooner with a neurologist. Im curious if having the surgery helps with short term.memory loss or.is that something ill always have to deal with. I have 3 small children and it pains me not being to remember. Also, they didn't say i had any of the relates conditions.

[desertstorm2009]

Your title of "a sudden worsening of symptoms" alone warrants a visit to your NS in my opinion. If you make an assumption otherwise it could cause you further problems later. My daughters condition also worsened after the birth of her twins, it is not uncommon. Get checked out, either way you 'll be glad you did. Good luck :-) Lisa

[selmaS]

  Hi and welcome to the Chiari forum.

In reading how the hormonal IUD works, it may cause HA's and for someone with HA"s due to Chiari u may not feel the best for the first month or so after it has been placed.

Depression can be due to the birth of ur son, and it can be Chiari.....

Have u ruled out ALL the related conditions to Chiari? Sleep apnea, tethered cord, POTS, ICP, syringomyelia, ehlers-danlos?


These related conditions can affect how u feel and heal post op....so do make sure they are looked at b4 u schedule surgery.

I had surgery 4.5 yrs ago and do not regret having had it....I am doing better now then I was b4, I am still me, Chiari is life altering....but I am finding new things about myself I did not know b4.....and there are things I can not do that I did b4.....but I am happy....and that is what is important.....

There are stages we all go thru in finding out about Chiari it is the same as with losing someone dear...denial, anger, depression and then acceptance.....and we go thru it again as we heal post op.....

Knowing u r not alone helps, and sharing with us and educate urself u will get thru this.

[leahley]

I also forgot to add that I have also started having depression, but Im not sure if its from my IUD or my fear of surgery, and the fear that I will never be myself again if I do have the surgery...