Rapid Progression?

[Lifesvr7]

Aside from headaches and minor mech and shoulder spasms which I have had forever it seems, I just became symptomatic and was diagnosed about 2 months ago. They started showing slowly at first with vision changes and tingles in fingers and feet, then grew to include dizziness, more severe headaches, more severe neck pain, more severe vision, nausea, tired, heavy or fatigued arms, joint pain (? Not related), etc. it seems as time goes on, the faster the symptoms progress. This week, I seem to get new symptoms daily and what I have gets worse daily. I feel like I'm on a very steep hill and going down fast. Cervical MRI is Wed. Waiting to see if NS is going to order CINE now or wait until I see him. What worries me is my appt with him is not until mid April. I'm not sure how much longer I can take this rapid progression. It's scaring me a little, wondering if maybe there is a syrinx or increased ICP or something causing everything to go haywire so fast. Should I be worried. Do I need to throw a fit to try to be seen sooner or is this just a day, week, month in the life of one with Chiari?  I know enough to expect the symptoms, but it's the rapid progression or decline in health that is freaking me out.

Starting to post questions almost as often as I get new symptoms...

Thanks

[selmaS]

  Hi, I did respond to ur other post and yes Chiari can affect hearing...but without monitoring this condition there is no way to know if it is this alone or if u may have another underlying issue.

Have u had a MRI since ur DX?

[debbie581]

i was told i had a hind brain hernia 17 years ago now ive lost my hearing in one ear could this be down to the hind brain hernia

[selmaS]

  That's just it, we r limited on energy as it is and to  worry and waste it on others that really  do not matter is a waste of the little energy we have....so y bother...lol...

I use to care, and have found that it really doesn't matter that much to them, so y should I care what they think about me....I do what I can,

[Lifesvr7]

Yeah, I'm basically alone in this fight but sometimes it's better that way. Less energy spent trying to explain or convince. My roommate helps with the housework and errands, so whether he believes or not, for now that's good enough.

[selmaS]

  I may have accepted this is how I am, does not mean I am happy about it....and to fight it is unproductive...I was there too, far too long, I just accept this is how it is and I will do what I can to help , and avoid what does not...

Chiari cycles so even for us to stay under a Drs care once we feel better is diff so it can take a long time to DX and there r far too many Drs that do not understand how Chiari can affect us we can not expect friends and family to.

For yrs, I was made to feel lazy, and that I was blowing things out of proportion....I was so  happy that my DH was with me to hear how this can affect me....he had the light bulb moment and put it all together....and as long as he knows I am ok with how it looks to everyone else...I do not care.

[Lifesvr7]

Everything that is happening to me is weird and debilitating. I'm not sure ill ever get to the "content"  state  of acceptance or whatever it is you seem to be in. I honestly can not imagine living the rest of my life like this. I whined and complained about my chronic back pain all the time, but that was nothing compared to what I'm going through right now. Especially since even with a diagnosis now, people still have issues understanding because the symptoms are so random and transient. I can have one set one day and a whole new set the next.  Everyone either thinks I'm lying, exaggerating or crazy, doctors included. Frustrating.

[selmaS]

  LMAO...I know right now the forum is in transition, more newbies then regulars so it is not as active a forum as we will build back into...

The week day threads go unposted so I know it is until they all get comfy here : )

I still get those tremors.....mine I believe are from the EDS DX I have.....seem to be more bothersome if I carry nething in my right hand,....then it tremors when I bend my arm...weird I know...lol...but aren't we all...lol...

[Lifesvr7]

I'm beginning to think you should just come move in with me since we seem to have our own private little chat going on in three different posts....just a thought so when my fingers are numb or shaking so bad that I can't type, I can still annoy you :P

[selmaS]

  Only way we can look at things....

Have a good evening : )

[Lifesvr7]

Who knows. I don't think there is any way I can avoid stress anyway but trying not to sweat the small stuff....have plenty of big stuff to sweat.

[selmaS]

Same here....lol...oh throwing my name around,,,,nice,,..lol...who knows if that will give u ne clout...I hope it helps some....

But u sound like u had offers so that is good....

[Lifesvr7]

I'm to embarrassed or proud or whatever to ask anyone for money, even my own family. I told them they could do whatever they wanted and it would be appreciated, but that I honestly needed to be left OUT of the loop because knowing would make me just as anxious as asking people for money myself and Selma told me I have to avoid stress. Not sure what their plan is, but every little bit helps. I doubt they will really do bake sales but maybe one of those online donation accounts or something like that.

[selmaS]

  I know what u mean...I was working 70 plus hrs a week when I had the drop attack that lead to my Chiari DX....I felt like it was a never ending battle....but I had to have surgery for my ankle and knee as a result of the fall, and my knee surgeon sent me for testing for Lupus, and that is when I found I had Chiari so while on a medical leave I started my search.....not sure how I would have done it other wise....

I wish I had friends that would have come together for a fund raising event....but I did not want to ask...none offered so...eh....oh well...we got thru it...it is harder now that I no longer work....

[Lifesvr7]

No. Not yet. That's a bit far. Next I'm looking to see if there are specialists at Johns Hopkins and or UVA. They often have complex specialists. Told the friends they have a ton of cupcakes to sell so they need to start baking lol

The calls and stuff are slow going unfortunately. I'm sure I'm not the only one, but between work, household stuff, animals, medical phone calls, research, scheduling, appointments etc, there are never enough hours in the day...especially if you are TRYING to listen to your body and rest when you need to. I work from home and still can't get it all done. Can't imagine the poor folks who have to leave the house for 8 or more hours a day.

[selmaS]

  With that being the case inform ur PCP so all ur symptoms are in ur file, regardless if he can help, it will be documented.....

Have u looked into Dr Rosner in NC?.....

[Lifesvr7]

I don't feel like I have any doctors. I'm kind of in the middle. The regular neurologist wiped her hands of me once she got MRI results and the local NS is not seeing me until April unless there are cancellations. Being that they have not seen me yet, they really don't want to discuss much with me when I call most likely due to liability issues. I have apps with my PCP and pain doctors (from my back before Chiari Dx) but I doubt either of them will have anything to offer. I just feel like I'm in limbo and that is why I'm uncomfortable with what's going on. I just have not gotten "linked in" anywhere yet.

[selmaS]

  Hi, when ever u have new or a change in ur symptoms u should advise ur NS so they know what is going on...as often as u post here, call them...ask to be placed on the call off list so u can get in sooner.

It is hard to say what is going on, but so many things can cause symptoms to flare...stress is one of them, so do try and relax to help keep the symptoms under control.
Even relaxing can not keep them from progressing if that is what is going on....but, do try : )

Symptoms can just change at ne time....mine got progressively worse after a drop attack, which just came over me....I was relaxed...felt great...we just never know....and it was more then a yr after that til I got into see a Chiari specialist....

So do not allow this to freak u out....but do tell ur Drs.

[Lifesvr7]

Thanks. I actually am already on the list and have a message in to him asking if he will order the CINE study. I guess great minds think alike.. Even if they are herniating through the bottom of our skulls :)

[RheaAnn]

Hello! I'm sorry you're having such a rough time! That sounds like a a rapid progression. I did have more of a gradual progression over a few years, but like you, some symptoms would show up overnight. April is a wait when you have so much going on. If you are worried, perhaps you can call your NS office, speak to a nurse (definitely tell her how you have a lot of new symptoms and things are moving so fast) and ask if the doctor can order a CINE now, before you go. That way, he will have much more information when you go to see him.  You may also be able to be put on a list for cancellations so your appointment may be sooner. I always ask to be on the list. lol
I hope you can get answers soon!
Rhea