Now what?

[girlinxile]

So I have been crazy for a month and haven't been visiting so quick update. My surgery is schedule for August 14th but because I had to use 2 weeks of fmla late last year and 2 weeks for a surgery 3 weeks ago and because I had to use some intermittent days for my super new Chiari while I was being diagnosed  I now have 6.85 weeks of fmla left. And my little Hitler like boss whom I have never played nice with in 9 years told me she will be posting my job as soon as that runs out but before I will be back.. so yay. So everything has been falling apart and I will likely be delaying my surgery now until October to try to have less variables and more fmla. Since I had surgery 3 weeks ago to have a cyst removed I have been on pain pills frequently and have seen a sharp decrease in my symptoms so maybe I can ride it out.. I hope so. My family kind of needs me to.... So thats the quick update

But thats not my problem.

My 17 year old daughter has had headaches since elementary school. Over the past 3 months (starting right before my diagnosis) she started having severe neck pain. So when I heard Chiari could have a genetic component I took her to her doctor to see what she thought. Jordyn (my daughter) told the doc she was in pain every day but didn't know if it was psychosomatic or what... we laughed that she even knew that word but the doctor said if we can cure her with an MRI then lets do it. If its negative then maybe the pain will just go away on its own. I haven't got to look at the results personally yet or read the report yet ( I will soon) but they called and said it showed a 2mm herniation but that it was negative. I saw the MRI disc and her cerebellum does have the same smooshed like appearance mine does but its not herniated at 7 like mine is and there is clear space for csf flow where mine is severely diminished. So now what? She still has the neck pain though neurontin seems to really help, she wouldn't be surgical and I don't want that for her, she technically doesn't have Chiari but I find it hard to believe she won't eventually (probably closer to my age-37) , and I don't know how to handle it. At this point I just regret even getting the MRI because now she feels like she has an axe over her head and in typical dramatic teenage logic states that no one will love her knowing she will need this surgery some day. She has become very tearful all of the time and granted, maybe she just needs a few days. Does anyone have any ideas, thoughts, suggestions, parenting tips, suggestions on how to talk to her about this, what kind of doctor she may need, if I should maybe contact some for of research group to see about following her.... I can deal with me... but this unknown with her and seeing her be upset about this is way way worse.

[girlinxile]

Sara... I loved your response and to be honest we did discount some of her symptoms for years and still we attributed some of those to anxiety.. namely headaches and stomach aches since childhood but I still feel that was anxiety. The neck pain is severe and is making her crazy. When I talked to my NS nurse the other day.. she said I should probably take her to a pediatric NS. I said I want someone who will look at her scans with knowledge of what mine say as well... it says no Chiari but is herniation super common? And will this progress? I'm just really confused about the whole thing honestly and overwhelmed :(

[desertstorm2009]

My daughters herniation eventually reached size 12mm but it took years to get there during which she suffered immensely due to Dr's telling her she didn't need the surgery... Then she found Dr Oro :-) Lisa

[nsalem656]

Most importantly, make sure your daughter knows what symptoms are. She might just be complaining of neck pain and headaches but have other symptoms that she doesn't know is a symptom.

[Sara_Jane19]

Hi! First off welcome back! I am so sorry to hear you guys are having so many issues in your family! I hope you are able to figure out your work and time off so you can get the surgery you need!

As far as you daughter goes I just want to let you both know she is not alone! I was diagnosed at 15 and am now 20. My herniation was 5mm when they found it and 7-8mm when they did surgery in December. Make sure you don't discount her pain just because of the size! I had so many doctors tell me I was just making it up and that since I was a teenage girl they thought I was seeking attention. When they did the surgery they realized it was much worse than the MRI showed. That is why the cine MRI is so important, like Selma said. Also, they found a number of related conditions which have caused me more pain and symptoms through the years: make sure to rule those out too!

She is lucky to have you, as you can understand her pain. My parents still don't, and never fully will I pray, understand everything I have been through on my chiari journey. know that at least you have each other and she knows her body best. If she feels like something is wrong then advocate for her until someone is willing to help her!!!!!

If she needs to talk to someone please feel free to direct message me, and again good luck with your own battle for care!

Sara Jane :)

[girlinxile]

I just looked at her scan report.. it also reports uncovertebral osteophytes...or bone spurs on her c4-c5. Maybe this is part of her neck pain but so far everything I see on these says they are an age related issue so more questions than answers. desertstorm.. what size was your daughters herniation if you don't mind my asking? And her report also said no sign of chiari malformation. So now what? Do I spend the money to take her to see my neurosurgeon? And I know herniations can be common, but I would think that with my diagnosis.. her herniation would at least be considered a prediagnosis. I have a Bachelors of science degree so the research angle makes me think that someone should give a crap and want to follow this somewhere.. lol And thank you for the encouragement.. she may very well need to come visit here to see how much support is here for her if and when it all comes crashing down.

[selmaS]

  It was good to get an update from u....so sorry things are so out of sorts....I know how u feel with ur Boss, mine terminated me as soon as my FMLA ran out I also required 2 surgeries b4 my decompression.....but I did have vacation and sick time owed me.....so I did get a little more out of it then I would have with out that.

As for ur surgery date when u do have one please post it on out surgery date thread so we can post a prayer thread for u.....

And as for ur DD, Chiari is not defined by the size, I know many Drs use it to classify it as chiari but Chiari is the malformation of the skull which causes the tonsils to herniate....and regardless of how large or small the herniation she may have a related condition causing some of her pain and issues,....so do rule out ALL related conditions and make sure a CINE MRI is done as the still pics could have caught where flow looks good, but u really want to see how it may change with BP as it can affect things....

Find out if she has ne related issues...EDS can cause some of the issues and may be the source of her pain, and if she does not have an obstruction to CSF flow...then mayb it is just a matter of dealing with pain and nothing more...so try to get ur DD to relax...mayb join  us here, it may help her to see she is not alone....

[desertstorm2009]

Forgot to tell you, my daughter was also diagnosed at age 17, suffered for years because Dr's said she didn't need surgery. Then she found Dr Oro and he did the surgery immediately. She is very happy and healthy now thanks to him! So many Neurologist try to dismiss Chiari less than 10mm because they don't understand it! Have you considered getting another opinion ?

[desertstorm2009]

A friendly hello.... Sounds like you could use it. First of all, what a shame your boss is such a jerk. Hopefully you document everything and gather what proof you can so you can report him when the time is right. There are very strict HR and FML laws these days and companies don't want trouble, but documentation is key. Next, about your daughter, I know what it's like except my daughter was diagnosed and had the decompression surgery nine years ago, now it's my turn, but I haven't done it yet. It's not a position any of us planned or wants to be in. All we can do is deal with it and try our best to be strong. Sounds like you're doing a great job at that! Hang in there, you both will get well. You're not alone:-) Lisa