Wasnt Supposed to happen...Last resort, I guess.

[keith44]

You will all please forgive me, but about half a year ago I found out I--I HAVE Chiaris and could not take the information. I had always been a very physical person; running, sports, a sex life, etc.; and suddenly I realized there was a REASON for the pain...the INability...the fainting, and so forth.

At first, friends joked it off to age; though most of them thought it was my diabetes (Type 1 1/2: dr says I have no family, doesnt ever matter what I eat, so its a strange label). Then I went to the dr when the left side of my shoulder looked like Arnold Schwartzenneger and the right side looked like ME (sadly its the me side he considers healthy).

I go to churches where we pray for people to get well. The Holy Spirit works in them, etc. A Men's Group I was in prayed and fasted for answers, and from what WE understood God said no SSI, plan to work, etc.

Now, the pain is taking most of my left side. Work would be almost impossible, and I have lost jobs since finding out.

THE QUESTION, I guess. My dr; endocrinologist for my diabetes; wont talk with me about much until I find a specialist for the Chiaris. But the specialist I went to 6  months ago or so said he found "nothing worth working on". Obviously something has changed, but without money it seems no one wants to talk.
Please help.
If it is easier, my email is keith.***@****
All this is very new to me.
In Christ,
Keith

[*Stormy*]

Hello Keith and welcome,

MH won't let you post personal emails on this site due to privacy but if at any time you would like to speak to someone privately, just put the arrow on their name and go to "send message".

Now, I don't have too much to add b/c the ladies above have done a great job with their advice. I know how you feel, being an active person and having trouble accepting that there is something happening that is out of your control. I was training for a marathon when my symptoms started to become to an unavoidable level, yet I denied it and kept on pushing myself and I am very sure that is what caused my symptoms to snowball very quickly. I have the left sided issues too...and even though I was limping on my left leg, I still went for a run that day...wasn't a wise choice. 5 days later, my gait was completely compromised and I was in shock at how quickly I deteriorated. Unfortunately, I didn't have a dx to work with and no one else seemed to know either, it took me six months to find out I had Chiari and it that time a lot of damage was done. So what I am saying is that it is a fine line b/w waiting and waiting too long. By the sound of  you symptoms, there is progression and you need to see someone knowledgeable.

I am wondering if the "specialist" you saw was a neurologist (NL) or a neurosurgeon (NS)? There is a vast difference between the two as far as how much help you will get. I would get all your scans, reports together and do some research to find a good NS near you. We have a link here of some that our members have used and liked, but again, you need to research to find the right one for you.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

I can't help you with insurance advice b/c I'm in Canada and our health care system is different but it sounds like there are some here that can.

Good luck...please keep us posted!
Carolyn

[Spaceystac]

My advice to you would to start by getting your medical records, and researching what you find in them on your own. Many people in positions like yours and mine have had to be their own advocates and learn for ourselves when the doctor dont seem to tell you whats going on, you should not let them with hold your own information. You can get your images and the reports (I advise the disk it has both usually) I assume you have MRI's so get those and start gathering your doctor records as well, it is nice to have things handy, if you dont it can delay some process.
  When you have a Chiari Malformation, you are at high risk for other conditions like Syringomyelia, and that needs to be determined, some of your symptoms sound like they might suggest more to your pain than just Chiari.
  I wish you all the luck, but remember that you have worked hard for a long time paying into SSI and that money is entitled to you when you need it. You paid in, for this exact reason.
I think you should follow your heart and what your body tells you. Listening to your body is what told you something was wrong in first place. I am not saying your friend fasted for no reason, but you need to trust in your self and what your body is telling you.

God, grant all of us the serenity to accept the things we cannot change,
The courage to change the things we can,
and the wisdom to know the difference :)

[pamk5]

Hello Keith and welcome!  What happens alot of the times is that we see specialists that are NS's that only see chiair patients occasionally.  Now there is a difference between those and the docs who devote their practice to CM.  I say that because the first NS I saw said something very similiar to that.  "Nothing there to cut out, no reason to see you back"  I was blown off in like 5 mins.  So it is important to find someone who specializes.  There is a list here in the forum of docs other members have used and liked.  

As far as no money goes.  I am assuming you dont have health insurance?  Are you eligible for medicaid?  There is now in most states a high risk pool funded by the new health care reform act.  Premiums are pretty reasonable and preexisting conditions are covered in the federal option.  Now thngs vary greatly state to state with insurance so I suggest you call the dept of insurance in your state to ask what is available.  

The symptoms we have can be life changing and disabling.  So I am not surprised you are having difficulty with work.  I am sorry you are in pain and I hope you find some relief.  Make sure you get your old scans before you see someone else.  

Best of luck to you,
Pam