Don't know if I can handle it.

[murryj]

So after many years of being told I was crazy by my family and Doctors, I was dx with Chronic fatigue in 1986. I quit telling docs about it because everything was blamed on CF or my weight, if I went to the doc for the sniffles I ended up in surgery or on a new med.They have removed my tonsills,gallbladder, apendix, and all reproductive organs. At one time I was on 13 prescriptions for all the life threatening diseases I had...Diabetes, Lupus, High blood pressure, Hypothyroid, Depression, RA.

I quit taking everything 9 years ago right before I got my CM dx.I was told there was nothing I could do about my CM so I never saw my NL again. The last contact I had with a doctor was in 2008 for a kidney stone, which ended up revealing enlarged lymph nodes in my lungs which they were sure was cancer, but wasn't...needless to say the thought of going to the doctor causes me a great deal of stress, but my neck and CM problems have become so bad over the last year, I made an appointment yesterday with an internal medicine doc @ Vanderbilt who can get me into Dr. Chang(hopefully), and I know how blessed I am that I got an opening so quickly and that there is an amazing facility and CM specialist just an hour from my home, but the anxiety is going through my spoons like water.

Should I type up a complete list of health history, and the supplements I take or just do their forms? I really don't think I can handle it if I get treated like I'm crazy again. Any suggestions? I don't want to come off as a defensive basket case with new docs. Should I explain my anxiety?
Thanks for taking the time to read all this.

[lydelia]

Also, do make a list of the symptoms you are having, even if you are not sure whether they are related to chiari or what. He will want to know that too.

[lydelia]

Hey. Once you get in to see Dr. Cheng, you will love him :D I know because he is my neurosurgeon, and he is doing my decompression surgery on Oct 18th. He won't treat you like you are crazy. I went in there afraid of that too, and he just smiled and talked to me and explained everything to me. His nurse, Cynthia, is nice too. I live in KY and drive 2 1/2 hours to see him. He is worth the wait. If you don't get a response from someone in regards to scheduling call his office. The people there are all very nice.

Message me if you want to talk, or you can call me. I will send my phone number to you.

Bring a list of everything you take, even the supplements. Bring with you any MRI's you have had done, even though your office should send everything, I always bring it with me.

Please be patient and don't fret about Dr. Cheng. He is very kind and understanding.

[linnielou232]

I know how u feel when you think your going crazy because of all the difficulties your body goes through with Chairi.  I did just what Selma suggested.  Have all your med's written down before hand.  I actually carry it in my wallet now.   It just saves a lot of time with the Doctor's.  I had a had time sleeping after my surgeries, so I started taking Zactac at night before bed and it helps to sleep.  I don't like taking med's but you have to do what is best for your body.  I pray you will get aswer's.  Just keep being persistant there is a doctor out there that will listen and understand.

[selmaS]

  Have u looked into doing the sleep study at home...there is a company that sets things up in ur home and it is done over 3 days instead of just one night.

Check out NovaSom

  Chiari can and does affect breathing...so this does need to be addressed both ways...with the sleep study and a NL and NS that r experienced with chiari and chiari related conditions.

    "selma"

[murryj]

So I really liked the medical student I saw but then I met her supervisor who informed me Eppstien Barr or Chronic fatigue doesn't exist and that it was debateble whether or not Chiari is causing my headaches.He decided my sleep apnea is causing my headaches.
My sleep apnea is so mild they were not going to put me on a cpap but my o2 drops below 80 when I fall asleep so they did.
Now my blood tests indicate a lack of oxygen and or kidney problems.
I got the referal to Dr. Cheng but they have not called to schedule yet.
Sleep study can't get me in for 5 weeks.
I am worried my Chiari is effecting my breathing and no one is going to listen to me...they didn't even offer me pain meds, they just said take tylenol.Trying to have faith, I am going to email and see if I acn get some oxygen while I wait to see the specialists.

[selmaS]

  Hi...I think I can say for most of us here, we know just how u r feeling...it is very stressful...as we know there is something wrong, but drs deny it all the time....and all we need is validation something is going on.

Deff take a typed list of symptoms, with a separate list of ne RX meds or OTC meds and supplements u take including all vitamins etc.....I did, and it saved time the nurse took my list and stapled it to their paperwork and I got more time to talk with them instead of filling forms.

If this Dr knows chiari u should not have to explain ur anxiety at this point....neone with compression of the brain stem will suffer from some anxiety as a result, but we have even more as a result of the medical profession not listening to us.

I pray u have a good visit...please keep us posted : )

     "selma"