So Frustrated!

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1

I had my decompression surgery one year ago. The surgery did relieve me of the "pressure" headaches....but that's pretty much all it did! I am still exhausted, still have headaches, still have neck pain, still have upper & lower back pain, still have dizziness.....I could go on and on. You get the idea. Anyway, I have been told by a few fellow Chiarians that I should be tested for EDS, dysautonomia, and tethered cord syndrome. When I went for my check up this past April, I listed my problems to my NS and was answered with "well, you probably have Fibromyalgia". I really don't think that's my problem! I have never had a sleep study, and I have never had a Lumbar MRI, only brain, cervical & thoracic. I had called my NS yesterday to see if he would order the L MRI for when I come to my appt on the 23rd of this month. I just got the call back that, no, he doesn't want to order one. He wants to see me and talk to me first. I am so frustrated!!!! Doesn''t it make sense that if my lower back hurts.....all the damn time.....that I should have an MRI to see if there is something going on there??

Here is a list of all of my symptoms. What do y'all think?

1. Extreme fatigue

2. Headaches that occur on only one side of the head at a time

3. Dizziness when getting up out of bed or just standing up from a seated position, lasts several mins

4. Constant neck pain (tight, stiff feeling)

5. Crackling sound when turning or rolling neck

6. Pain in the middle of my back

7. Constant lower back pain (some days I cannot bend over at all)

8. When I look down, or bow my head, I feel an uncomfortable "pull" from my neck all the way down my spine.

9. Every joint I have crackles, pops, and hurts.

10. Little to no deep sleep due to being unable to find a comfortable position. I roll from back to side to stomach to side to back all night long. No matter how I lay, it causes something to hurt!

11. Balance issues - majority of the time, I can't walk a straight line and I will trip over thin air!

12. Memory issues - I will literally forget something in seconds if I don't write it down

13. I am cold all the time (and I live in South TX! I will often turn off the AC because I'm cold!)

14. I have to clear my throat often.....feels like drainage from allergies getting stuck, but I don't have any allergies....

15. Shortness of breath - I often feel as though I can't take a deep enough breath. I will sometimes stretch and try to yawn just so I can fill my lungs

16. I wet the bed up until my Senior year of high school. (um...yeah, I was THAT girl at sleepovers)

I think that covers them all.....I probably forgot some, but that should give y'all a pretty good idea of what I'm going through, and I'm sure many of y'all are going through the same!

So, what do y'all think??

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Txmom, I think that if your NS is unwilling to help you investigate your symptoms it’s time to see a new one. Have you looked into the Brighton and Beighton criteria for EDS? Not all NSs are even aware of the link between Chiari and EDS. If you continue to get nowhere with your NS I would recommend going to see The Chiari Institute in Long Island, dr Henderson in MD, Georgetown university hospital (one of the NSs trained with Henderson)in MD, or Dr Rosner in NC. The reason I like these NSs is because they have a reputation for treating the whole, not just one part. They screen for cranial cervical instability in EDS patients. I wish all of them screened for EDs, tethered cord and dysautonomia, but they don’t!

And ps you should absolutely have a sleep study done- we all need that:)!

Jenn

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Thanks for the reply! I have been tossing around the idea of changing NS's for a while. My NS is in San Antonio, and I have heard from numerous Chiarians that Dr. Jimenez, also in SA, is an amazing NS. I am really thinking of picking up copies of my MRI's and medical records from my NS at my appt on the 23rd, and if I'm not happy with his approach, then I will call Dr. Jimenez's office and see if I can get in there. I have to do something.......

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Good plan. It stinks to have to start over with a new one, but worth it if you get some relief, and especially if your poor spinal cord is being assaulted hundreds of time a day with TC or CCI. Please keep us up to date.

Hang in there, Jenn

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Thanks!

6

Thank you!

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This is just awesome. I just reread through my Cervical & Thoracic MRI's from last year. On the T-spine MRI report, the last section actually says this:

"The sagital total view of the spine reveals an abormal L4-L5 level. Segmental instability is noted with a 5.0mm subligamentous disc extrustion. A radial tear in the outer annulus is noted with flattening of the thecal sac. A complete examinations of the lumbar spine is recommended for further assessment."

This report is from June 2013. My decompression surgery was in Sept. 2013! Why did I not get sent in for an L-spine? And why is he arguing with me now about it?? Ugh....

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Call him or your PCP and tell them you need this done before your next NS appt. tell them the radiologist had recommended an l-spine MRI and you experiencing worsening symptoms. Most offices won’t argue that hard about an MRI. Don’t take no for an answer. Just be polite and persistent.

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I’m going to keep at them for sure! It makes no sense!