Help me get some help!!!!!!!!!

[slt1021]

Hi Im new to this site  but have felt great relief in reading some of these posts.  i feel as though mabe I am not losing my mind....My Chiari was noted approx. 10 yrs ago after c/o incresed headaches with accomapnying facial tingling and difficult speech.  My Drs response to this was  ITS TOO SMALL TO WORRY ABOUT.  THE ONLY TX IS SURGUERY AND YOUR NOT A CANDIDATE BECAUSE YOU DONT HAVE A HOLE IN YOUR SPINE.  EVEN SO YOU WOULD HAVE TO GO TO NY STATE BECAUSE NOONE DOES THE SURGERY AROUND HERE (Niagara region Ont Canada) So that was that.  he tried a couple of medications but with no great relief to headache pain. That was in the summer, that fall I had a bronchial infection that when I coughed caused searing paralizing head pain ( I had experinced brief episodic pain like this since i was young when I strained-thought it was normal) My MD said that my menengies were irritated and inflammed from the infection.  Gave me codiene cough syrup that stopped the cough and thusly stopped the pain.  however from that point on my headaches became much more severe and frequent.  I had also c/o of some rt. shoulder cap pain down to my wrist with weird tingling in my pinky and ring finger with some slight involuntary motor movements.  sent for nerve conductivity test with a very arrogant neurologist who told me I had no nerve damage and that was that.  I should also say i had this one weird episode around this time that I woke up and couldnt move ANY part of me.  Up until this time have just chalked it up to some weird sleep/dream state but have never forgotten it or how terrified i felt when it happened. Never told anyone. had my first pregnancy at 35 but miscarried.  had my sone at 36.  Not sure if this is relevant but remembered being scarred about delivery that i would get THE HEAD PAIN as I had come to call it during delivery and stroke out, and even spoke to my OB about it but still not connecting the pain to the Chiari did not mention this issue to her and she felt that i was not hypertensive and had no particular increase in my headaches during pregnancy ( or what I had come to know as my normal) she didnt consider any risks.  Delivery  a face down breach with cord around neck, delivery vag with epideral.  Baby blue at delivery but normal APGAR.  Normal milestones have been reached but I think he too has Chiari. Headaches actually better after delivery for about 3 yrs.  Thought to be r/t not returning to Birth control pill. Headaches becoming increasingly severe with increased frequency about 2.5yrs ago.  Also c/o heel numbness bilaterally, and blurred central vision lt eye. Have recent (7/8yr) family hx of MS. (first case in family)(female older maternal cousin)Had another set of MRIs to rule out MS.  No MS plaques seen, Chiari again mention in report 9mm I believe but no importance attached to it. I was diagnosed hypertensive Jan 09 and started low dose Ace Inhibitor.  I was unfortunately dx with DCIS hormone negative stage 3 breast cancer in sept.09.  Had masectomy, chemo, radiation and coming up to last does of herceptin.  However in the last 3-4 months headaches again worse.  had thought the last 2 years that i was choking on food alot, however am now choking all the time.  Food feels to go 1/2 way down and stop.  If i dont panic i can usually swallow, swallow, swallow and get it down.  But now x2 in the last 2 days have had 2 severe episodes and was scared I would not clear....really scared. I mentioned to my Md the increased choking.  had Barium swallow last week with NO APPARANT SWALLOW DEFICIT. And the past week the head pain undescribable.  I have also been c/o in the last 3-4 month of +++++muscle and joint pain and fatigue and exhaustion.....like as if I were in chemo again but have been long done that tx and had been feeling better. I have had 3-4 episodes of chest discomfort and tachycardia.  Have had almost every part of me xrayed with the same dx-arthritis.  Also since Jult have been experiencing a zapping at the top of my spine when i turn my head a certain way ....MD says......pinched nerve.  Also some on on here c/o upset stomach...is this a sx.  i have had this nauseated feeling every day for about 2 months, not all day but at some point everyday. Well this has ben cathartic to get this all out to some people who understand.  I can no longer live like this!!!!!!!!!!!!!Pls help me get my MD to connect the dots and see the whole picture.  i see him again next week..........any suggestions about requesting a referal or tests to get done.................thank you in advance for anyones input...........

[slt1021]

   Thank you.  I will ask for the specific MRI you mentioned.  What is POTS and NMH.  I get blackish often when I stand up sometimes. To what level of physical deterioration can one expect?  i certainly feel unable to do my job right now.  i attempted to go back to work in october and couldnt do it.  The fatigue....I was exhausted to tears, headache and nausea daily....Went back off work.  The nausa and headaches like a weird buzzing swirling electricity in my head...The increase in sx seems so drastic in the past 2 years do they flare up and settle down? or can I expect to continue to feel this way with only more sx to come. Very little educational material out there.   Mostly other people sharing their experiences, which is helpful.  Thank-you for your support.     Shannon

[pamk5]

Hello and welcome! I know the health care system in Canada is different than here in the states.  So as far as how to get you to someone there who can help I am not sure.  I know we have members who are in Canada so hopefully some of them can chime in with some advice on how to get the needed care there.  As far as how to educate an MD on Chiari....all I can say is good luck!  Seems alot of them are pretty close minded when it comes to this illness.  You can try printing out some info from the NIH website about it and taking it with you.  If coming to NY is an option for that would be a good choice as TCI has several specialists there.  

About the swallowing:  I too have that same issue and in order for them to see an issue on the barium swallow I had to swallow a piece of marshmallow.  I was finally diagnosed with esophageal spasms probably due to compression of the vagus nerve that comes down the brain stem.  Not alot helps that except to swallow(alot), drink lots of fluids, and watch the diet.  I cant eat things like beef or really tough meat.  When it is really bad I stick to liquids.  

With CM the size of the herniation is not as important as the amount of crowding and if there is blockage of csf fluid.  The test to ask for is a Cine MRI.  I would also ask for an MRI of your spine to make sure there is no syrinx.  

I also have the tachycardia and chest discomfort and was finally diagnosed with POTS and NMH with a tilt table test.  My bp drops when I stand as well.

I hope this helps.  I pray you find some help and relief.  Sorry you are going thru all this.  Sounds like with the cancer and everything else you have more than your share.  Again, welcome.

Pam