Not New to DX, New to being concerned about it

[Loriann6482]

Hi; I'm new to MedHelp and to this community.  I was DX with CMI in 1999, quite by accident, when I was having neck pain, radiating shoulder, arm and hand pain, numbness and tingling in my arm & hand.  Doctors did a brain and c-spine MRI w/wo contrast, then referred me to a Neurosurgeon.  The NS asked me if I ever had headaches. I said "sure I do, doesn't everyone?" He asked if I ever had "thunderclap" headaches, or explosive ones that came on really fast and furious.  I said sure, that happens when I strain to go to the bathroom, when I hit a high note and hold it out while singing, when I laugh hard and especially when I vomit. My body has practically taught itself NOT to vomit because it hurts SO BADLY.  It's been happening since I was a small child. I asked him why he wanted to know.  He said because he knew why I had them, and that it wasn't normal for that to happen. (It had always happened to me, so I thought it was:/) He told me I had a Chiari Malformation, explained what it was, and offered to fix it surgically when he fused my cervical vertebrae.  Since this was BRAIN surgery, and I'd been dealing with the "headaches" my whole life, I said no thanks, doc, just fix my neck.
  So here I am, 14 years and another cervical laminectomy later, in nearly constant pain.  Struggling with joint pain (EDS?), head pain, heart palpitations, fluctuating blood pressure, loss of visual acuity and visual disturbances, and nausea, tinnitus, sleep apnea, syncope and constipation, among other things.  
  In 2008, when I had my 2nd laminectomy, I asked my neurosurgeon about my CMI, since I'd had multiple MRIs and he said it was not anything to be concerned about.  Well, I'm concerned now.  A week ago I woke up with the worst headache EVER. If the pain chart went higher than 10, I'd have given it a 15.  Worse than childbirth!  I was frightened, as well as nauseous and my heart was palpitating like crazy.  I thought I was having a stroke.  I went to a University Hospital about 70 miles from my house, in Chicago, because the local hospital is where my neurosurgeon practices and I knew this was now something to be concerned about, whether related to CMI or not.  I was admitted and medicated to bring the pain, my BP and the nausea all under control. They tried to write it off as "just a migraine", but I did some research.  All the symptoms I've been writing off are, or could be, related to my CMI.  My herniation is 5mm, I have retroflexed odontoid process, and minimal CSF flow on CINE-MRI.  I'm going to follow up with a Chiari specialist.  I've been referred by a friend to The Chiari Institute, Great Neck, NY.  I'm in the process of getting my records together and submitting paperwork and MRI cd's to them.
  So now you know where I come from and where I'm headed.  I'm in college :) and gonna be a Surgical Technologist when I grow up. I have yet to let any physical challenge stop me from striving to attain my goals. That isn't about to change.  I do know I need the kind of support you folks can offer. Thanks!

[frankie_rush]

Good Morning,  I am glad you are taking control of your life and not letting this keep you down.  That part sounds like me.  I do hope you get everything you want and deserve.  Like Selma said we may have to go about it a little slower or a different route, but we can do it.  I hope everything goes good for you.  If you need a shoulder or ear let me know.

[selmaS]

  I also have a 7/9 on the Beighton scale too....I could not attempt to touch the floor as it made me too dizzy....and my shoulder subluxes too...

Congratulations on losing that amount...I have heard some that do not have EDS have issues after a loss like that and need surgery to remove the excess skin....not sure how well an EDSer would heal from something like that,

I had Dr Salvatore Insinga....Dr B was in the OR doing dopplar mapping for my surgery.

Dr B is a very kind man and tries to help everyone.....he e-mailed me long b4 I was a patient up there and offered  what tests I should get to confirm all that was going on and so I had all the testing needed to be reviewed by TCI.

[Loriann6482]

Selma, Thank you so much for the warm welcome and the hope and encouragement too.  As far as EDS symptoms, I meet 7 out of 9 on the Beighton Scale for hypermobility. In addition, one of my shoulders and one of my hips subluxate frequently, joint pain about 80 % of the time, muscle pain.  My skin is stretchy, and I didn't realize how much so until I had gastric bypass surgery about 2 years ago, lost 150 pounds, and now I have so much loose skin that no matter how much I exercise it will not even try to retract.  the skin in places that aren't so flabby is quite elastic as well.  I also will be interested to get the results of the tethered cord tests.  my lower back & hips hurt and the pain radiates or shoots down my legs, my thoracic area hurts quite often as well.
who was your surgeon? I have a good friend here in the local area that recommended TCI to me, she speaks very highly of Dr. B. ~ prayers for healing and pain free sleep, Lori

[selmaS]

  Hi and welcome to the Chiari forum.

Well ur story is very similar to mine I could have written it...lol...we all do share so much and yet we all can be so different.

I was told to have the fusion by one NS and told the Chiari was not an issue...but I also went to TCI and got more info and decided to go there and had surgery 4 yrs ago on the 28th of this month....

  With a retroflexed odontoid u have even less room for CSF to flow, I am surprised u have not had drop attacks...

Also I love ur attitude and u desire to go back to ur life's dream...but know sometimes it takes longer to get there and some of us may have to change that course...to a different path...but that is ok we r still moving forward.

TCI is great in that they look for EDS which u are unsure of...and with the odontoid I would suspect u do have it....do u have other symptoms?

I also had the palps and they have been gone since surgery....so a huge plus for me....I did find out I have EDS< tethered cord< cervical stinosis<Hashimoto's<along with my CM1 DX.....and knowing helps with the post op process....

What we all have to learn is patience...and allow our bodies to take the time it needs to start to be back on the path to a "normal" life or as close as we can get as Chiari is life altering....and is not cured by surgery.

Rushing to get back to our old life can cause set backs....so no matter what ne Dr says in the way of guidelines as to when u can  do something, know these are general and one size DOES NOT FIT ALL...listen to ur body and go at a pace that it allows.

Know u r not alone....we r all here to share what we know and say I understand...bcuz we really do : )