Just a vent/rant/got to say it before my emotions explode!

General
1

At dinner tonight I overhead my DS say something to Abbey (DD in prior posts) about saying the wrong words. I asked her about it and she said that it was a combination of stuttering and not being able to "find the word" she wanted to say. She said this is new and just started to happen.

We sat down and listed out all of her symptoms. What was startling to me, and I guess just really a in your face type of evidence that can't be ignored. Before the end of November/beginning of December Abbey had NO symptoms other than headaches (not migraines) which coincided with severe seasonal allergies.

here they are:

Severe headache. Had headaches on and off for years but never needed migraine medication until December 2012.

Nausea (takes a daily anti-nausea pill). Did not have before January 2013.

Tingling in her hands and feet. Did not have before January 2013.

Clumsy. (tripping a lot) she did a little bit but not as bad as it is now.

Light headed when raising her hands over her head (like washing her hair. She has to sit down half-way through) started in May 2013.

Scoliosis diagnosed at the same appointment (April 16, 2013) when we were told of the CM. The ped checked her because I mentioned her posture was 'off'. This was the same appointment that I mentioned Abbey's face seemed swollen to me for the first time.

Neck pain. Started in April 2013

In the last month we noticed:

Upper back pain.

Difficulty writing.

In the last week:

Stuttering/difficulty finding the right words when speaking. At this point it is occasional and does not happen all the time at this point.

Difficulty swallowing.

I have had some question (not here but in real life) our decision to have/support Abbey having the decompression surgery. From diagnosis to surgery will be a little over a month.

We did not seek a second opinion.

We trust our Ped and we trust the neurosurgeon that she referred Abbey to. Yes he initially said he was ok with waiting for Abbey to have surgery BUT he is not aware of the recent developments (due to loss of insurance). He did say that surgery was appropriate for Abbey, her symptoms and because of the MRI results.

We know that surgery is not a cure (neurosurgeon made sure we understood that).

We know that there is a 20% chance (according to NS) that surgery will do nothing for Abbey's symptoms.

We know that this surgery carries risks.

We chose surgery and support Abbey's choice to have the surgery due to what has happened since January. We are watching Abbey have more and more symptoms in, what appears to us, a very short amount of time!

Abbey is NOT faking her symptoms.

Abbey is NOT lying or trying to manipulate anyone.

Abbey is NOT taking this surgery as simple or no big deal. Abbey knows it is going to be a painful surgery/recovery.

Abbey/her parents should be supported by those in our lives in her/their choice for Abbey to undergo this surgery!!!

2

It is a vent/rant because we (DD's father and me) are under a lot of pressure by bio-mom and the courts. Due to legal issues I cannot go into details other than what I already posted. I know it's confusing for you all but I just needed to get it all out, ya know? Maybe a blog post would have been better instead of in discussion.

I use writing as a way to deal with or handle my emotions. No one here has done/said anything like Abbey is not being honest or questioned the choice for Abbey to have surgery BUT others in our personal lives have.

Beeba said:

I am confused about this being a rant or vent. It seems like you all have really done all your homework and on the correct path. Are people not supporting this decision and in giving the facts perhaps you left that out? I want to say the right thing here but not sure what has upset you so much. Other than the having to do this at all obviously... It must just be horrendous!! You are a mom who seems to be looking at every detail and the risk is worth a chance as she does seem to be progressing. But I want to be honest I don't know how to respond as I am not sure what has you very upset. Again other than the fact she has this. Can you fill in the details that may have prompted you to become angry and who you are angry with? As for things moving forward - definitely put a call first thing in the morning to spell out the things that have progressed and how quick. Your post would be great to print out as documentation of events. Please know I sympathize hugely and want to give the support you need here. What can we do? I don't think any of the members think for a second she is faking things or you are rushing her into an unwarranted procedure. And please know that the best results do come for teens. They can honestly express what they feel and they have finished growing and damage seems to be more minimal. Can you elaborate in anyway so we can express what you need at this difficult time. If you can't please know that either way I support your decision as you are her parent and you know your kid. Sending you only the best thoughts.
3

I have been reading all of the post-op surgery reports and watching a lot of youtube video's on surgery and post-op recovery. It's good to know that it is possible, I would guess normal even to have some symptoms be worse. Especially due to the trauma the body undergoes during the surgery.

I don't want to say that I like to hear about the bad recoveries BUT it is so much better to prepare for the worst and be pleasantly surprised by a 'good' recovery than to be blindsided by a 'bad' recovery.

Emmaline said:

And please know that some symptoms can actually increase right after surgery. My speech was BAD after surgery, and it continued to improve with healing. So may thing were worse directly following...vision, speech, coordination, numbness, etc...the list goes on. Not all NS communicate this and it is frightening to feel worse after surgery. Don't second guess surgery now, the healing process can be a lengthy process. It was for me. Sometime the younger ones bounce right back early on, but you can't base all recoveries the same way.

Anyone putting doubt in your minds need to be discounted in not knowing how this works. Don't give in to the fear...but rant or vent all you want! =)

4

Vent away. Goodness knows we have been there with his family. Some of them still act as though he just needs to work harder, try more to get better and stop taking his meds he would be fine. Sometimes you just gotta let loose in a safe place so you don’t let loose on the people pushing your buttons. You are informed and following the best course of action for Abbey, that’s all that matters.

5

You have found a place to vent,I know the feeling of desparation.My journey had been so long and difficult that I had myself diagnosed by researching everything I could find on chiari.I knew that the things I studied was exactly what was going on with me.I have many times felt like shaking some Dr.s and saying…Where can I find a chiari NS??No one was about to tell me where the specialist was who practiced in a few miles radius of their very offices,feel like suing them for making me wait so long because they don’t know enough about chiari to refer any one to someone who knows.What the heck is going on?Hope you know I hear you and understand where you’re coming from,what a relief to have all these wonderful people who are not NSs but they,in a lot of ways can help as you go down this path.You know you will not rant alone.I’m out 7 months and it has been up and down but even though decompression is not a cure all,it has been a God send for me.Your chid is the only one that can have a true picture of the pain inside,so many thinks that there HAS to be a herniation of some great magnitude,I am here to say that is not true, so many are suffering needlessly.I can’t imagine that there would be too many folks wanting to go through this surgery without cause to do so,the key to a better outcome is the right NS,one with lots of decompressions under their belts.It can be hard to travel to get to a specialist,one who listens to symptoms and believes what the patients say.This is not a easy thing to endure,it’s up and down then up and down some more so be prepared for a bumpy ride,it’s not for whimps.I have lucked out with this recovery,even at that it’s no fun.Hope all goes well for your daughter.My surgeon is Dr. Rosner,in Hendersonville N.C.he is a pioneer in this field,one of the best!

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Hi OhMy,

Just wanted to say hi and see how things are going....I see that you got some good input here...This is the place to let things out, for sure...

Please know that you are not alone in this journey...let me know if I can help in any way.