What I am supposed to do next?

[stephanie_C]

Hello fellow chiarians! I am new here, and I think this place is wonderful! I have read lots of post over the last several months and finally decided to post my own. I am 30 y/o and have known about my chiari  for a lil over three years nows. I have had on and off headaches my whole life. I remember being in 2nd or 3rd grade on the playground and every time I would yell (which I did a lot of at that age) I would get this excruciating pain in the back of my head that would last about 20 seconds or so then go away. About three years ago I was having a bout of particularly bad headaches so I went to the H/A clinic at the hospital I work at. The ARNP I saw ordered an MRI and called me the day after my test to tell me I had a 9mm chiari and referred me to a neurosurgeon. My neuro assesment was totally normal (no gait problems, reflexes are normal etc..) He then had me do another MRI of my C and T spine to check for syrinx - none. So he tells me that, at this point I'm not damaging my spinal cord and it was up to me if I thought my symptoms were bad enough to have the surgery. So at that point I just let it go and hope that this round of H/A's go way, which eventually they do. So back and forth on and off symptoms get better and worse over the next few years. Until about three or four months ago when I started get these weird "dizzy" spells. Every time I bend over then stand up, or squat down then stand up (which considering I have a 2 y/o daughter I do a lot of squatting) or even just stand up from a chair I get, I guess lightheaded would be better than dizzy. Everything kinda gets dark for a minute and the occipital H/A comes on. A number of times I have to sit back down again. After that had been going on for about 6 wks. The permanent H/As came back and haven't gone away since..... So back to the NS and MRI I go. Still no syrinx, chiari's still there (9 mm), assessment is still normal, no neuro deficits. Again he tells me there is no damage and it's up to me.

Then I start doing my own research and started reading these forums and it turns out I have quite a few more symptoms than just the H/A, I never mentioned them to my Dr cause I didn't know. I have always had back, neck and shoulder pain, BAD shoulder pain. I can't read books, cause looking down hurts. It's hard to wash my hair cause my head feels so heavy when I tilt it back in the shower.  I toss and turn all night trying to find a position to sleep in that doesn't hurt. I have always had a horrible memory. That has been a huge point of contention in more than one of my past relationships. I'm constantly being accused of not listening! I get these weird tingling feelings on the bottom of my forearms and my pinky and ring fingers. Anyways, I just don't know what to do! I'm afraid that one of these days when i stand up I'm going to pass out. And it's really hard to be a good mom with all these headaches and being tired all time etc... But what if I get worse after the surgery? I've heard so many people who have had the surgery still have so many problems. Any suggestions/thoughts? And also where can I find a list of good chiari specialists? I live in Seattle, WA.

Thanks again for creating a place like this for all who feel like we're alone in this battle. And, while I wouldn't wish this on anybody, its comforting to know I'm not the only one, and I'm NOT crazy!

-Stephanie

[selmaS]

Let me know how it works for u : )

"selma"

[stephanie_C]

Thanks for the tip! I just watched a couple videos on Youtube and I must say I am very intrigued. It looks like something that could possibly help a lot, Chiari or not. hmmm..... now to see if I can figure out how to get it covered by my insurance. lol

[selmaS]

HI and welcome to the chiari forum.

I am so glad u decided to join us and share ur chiari journey with us and u were able to benefit from the threads here already : )

I see u found someone from ur home state and possible drs office....and that will be so helpful to share info with each other.

U had ask about knowing which pain is from chiari and which is from the change in posture ......and all I can say is it is near diff to tell....., but u should try to correct ur posture, the one NL I was evaluated who is in the same group as my NS......he suggested that I try the Fieldenkras method to help with pain  and posture.

"selma"

[stephanie_C]

I am a cardiac sonographer at one of the hospitals on "pill hill". I love my job (a LOT) but the physical demand that it puts on my body is another thing I am worried about.  I would be out of work for a very long time if I were to have the surgery and that is something I just can't afford to do. But if I went back to work too soon.... well you guys know better than I do what could happen.

This does bring up a good point. How do I tell the difference between pain from the chiari and pain from contorting my body and using poor ergonomics at work. I try my best to support my body and sit/stand properly. But the fact of the matter is when your standing at a patients bedside and you have to fit your ultrasound machine next to a ventilator and between two IV poles and the patients weighs 350lbs so you have to push really hard and you're leaning over and stretching your arm out just to get the pictures/info the doctors need to properly treat the patient, you know its bad for your body but what else can you do, its your job! I feel like I'm in a no win situation sometimes!

[Spaceystac]

That office called me back fairly quickly. It took a few days longer than I wanted it to to get my info through the mail, to the office. But  after the get it, they say about 2 weeks and that was accurate. Their appointments were not that far out, they called back just a few days ago and I get to see him in the 15th. So it is going at a good pace for me.  Every one I have tried to see here in town say there is nothing they can do for me.    

I will definitely let you know how my appointment goes!
So Stephanie, what part of the medical field do you work in?

[*Stormy*]

Hello Stephanie, welcome to the forum!

I can totally relate to going backwards after diagnosis and realize that all those weird things that you though were just you (or anxiety) are actually something else!! I know exactly what you are talking about with the neck in the shower...I would tell my drs that too and they would just look at me like they didn't understand. My family constantly gets mad at me for "not listening"...I have 3 boys so I thought maybe it was a mother's defense mechanism!! However, I noticed that even though I would hear people talking to me I just couldn't shift from the thought I was in over to concentrating on them. I finally sat them down and explained it to them and told them they just have to be patient with me!!

To me, it sounds  like you are starting to see some progression with the headrushing spells and constant headaches. Also, with the tingling in your hands. That, along with if there is any CSF blockage should help you make the decision on surgery. I'm not sure if you have access to a CINE MRI but it sounds like the best test to measure your CSF flow and will show if there's a blockage. It is pretty hard for an NS to tell on pictures alone...and to me it sounds like it IS causing some damage. I have typed this sooo many times now...but I really want to caution people that sometimes (especially if you trigger them by accident) your symptoms can really start to snowball quickly so you want to keep on top of it and get regular check ups. I triggered mine by ignoring what my body was telling me and following my GP's advice to go back to running.

Honestly, for awhile after surgery, you may feel worse but it is all for the bigger picture. I had a hard time with the healing and I really didn't feel better for 2 months (that was with no leak or patch rejection) but I was ALWAYS glad I did it b/c for me the only other option was to keep getting worse until I couldn't walk at all. Now, I am feeling really positive and I am working with PT to get my body to a better place.

I'm glad to hear you have a appt. with the same NS as Stacey...I believe that she got an appt. really quickly so I hope the same for you.
It is amazing how much better you feel just finding others like you...it was the best thing I ever did to aid in my healing (mentally and physically!)
Good luck to you!
Carolyn

[stephanie_C]

Wow what a small world! I actually just called Richard Ellenbogen on Friday and I'm just waiting for my referral to go thru before I can schedule with him! How long did you have to wait for your first appt w/ him? I hope it wasn't too long. Good luck and let me know what you think of him!

[Spaceystac]

http://www.ajnr.org/cgi/content/full/24/2/165   try this article  MR identification of Chiari Pathophysiology   I love googleing everything!  

[stephanie_C]

Oh boy my question is totally a typo! I meant "What am I supposed to do next" oh well!!

One more thing real quick. I work in the medical field and I am having trouble finding in-depth information about CM. There are plenty of things out there written in "laymen's terms". But what I want to know is more of the pathopysiology and the mechanisms of the disease process. Does anybody know of any where I can look to get anything like that?

Thanks again,
Stephanie

[Spaceystac]

Wow Stephanie, its nice to meet you. I live in Spokane WA! and my sister is in Seattle and her name is also Stephanie.  I dont know if I have Chiari, but I do have a Syrinx. It has a small diameter of 1.5mm but goes from C-3 to T-1, so far. I get that lightheadedness and have for sooo long. I have passed out after this, I have found its best to sit back down asap when things start to go dark.    I have an appointment to see Richard Ellenbogen on the 15th of this month. He is a Chiari and Syringomyelia specialist at Harborview Medical center NS.   Glad that you posted : )Stacey