I just wanted to post this article for anybody who is looking into a diagnosis of instability. I am not diagnosed but I have so many of these “attributes” listed in the article I am going to look into it. Before my decompression Dr Heffez had me wear a soft collar for two weeks to rule out hyper mobility as the cause for my symptoms, it did not have an effect and I went ahead with the surgery. Now 4 months post op I have had 6 days of severe headache and the return of other symptoms I thought were a thing of the past- nausea and dizziness when moving my head. Heffez suggested today that return to the collar for a week to see if that stops the pain. I sure hope this recurrence isn’t a sign of things to come!!! The pain-free and pain-little have felt so good the past two months I just don’t have the nerves for another round!! I hope everybody is doing well,
Jenn
To me it means that of the peeps with CM there is a high incidence of those who have a connective tissue disorder, and of that group who had a “failed” decompression there an incidence of those who have the cranio cervical instability. I think the appropriate tests to start with may be the lateral, flexion and extension plain x-rays (which you already have)and your most recent MRI of brain or c-spine. I think the tricky part is going to be convincing a doctor to draw and map out the lines (eg chamberlains line etc.)on your imaging to prove an instability or invagination- unless its a surgeon who is proving a case for one of his own surgeries there may not be a lot of incentive to do that. My surgeon put me through the paces to detect EDS during my initial consultation with him - many of those were in that article (can you bend your thumbs to your wrists, touch the floor with extended knees, hyperextend fingers…) If you went through anything like that and scored high I would bring that up in your appointment too. I think you have enough reasoning to make a good case for yourself Beeba, I hope the spine doc the takes the time to figure it out.
I am trying to get a hold of Dr. Heffez. He did my decompression surgery last June and he said that it looked like my neck would "get me in trouble". When they found my herniation in 2009 , a couple of my cervical discs were herniated. everyone keeps saying they don't look bad enough well I beg to differ. I was just diagnosed with EDS and Dysautonomia. Dr. heffez had me wear the soft collar since my post op appt. then I now have an Aspen Vista which is more rigid. I am sort of frustrated by the lack of urgency about my neck. The Doctor who diagnosed the EDS and Dysautonomia is also concerned because my symptoms are progressing for the worst really quick .
So sorry to hear that after surgery you are still having a rough time. My chiari symptoms began after trauma to my face knocked my head back & messed my cervical discs up, also. The neurosurgeon says I will have to have both surgeries for any hope of getting better. I will see a new Dr on Monday for a second opinion. I have been thinking to myself, that a cervical collar might offer relief; I feel as if my head & body vibrates constantly & thought the collar might stabilize it. I plan to ask about that on Monday. Do you ever feel as if you are becomming detached from life? Just wondering if any one else experiences such. I wish you the best with your situation. I think you have already had your share of dealing with this.
LizSpencer said:
I am trying to get a hold of Dr. Heffez. He did my decompression surgery last June and he said that it looked like my neck would "get me in trouble". When they found my herniation in 2009 , a couple of my cervical discs were herniated. everyone keeps saying they don't look bad enough well I beg to differ. I was just diagnosed with EDS and Dysautonomia. Dr. heffez had me wear the soft collar since my post op appt. then I now have an Aspen Vista which is more rigid. I am sort of frustrated by the lack of urgency about my neck. The Doctor who diagnosed the EDS and Dysautonomia is also concerned because my symptoms are progressing for the worst really quick .
Liz, let me me know PLEASE what Heffez days when you talk to him. I got ahold of him by leaving a message at the chiari center on Kim’s phone- her message says she out of the office till July but somebody is checking the messages. I’m worried that your symptoms are progressing so fast and I hope you are able to get plan going with someone who can help- Heffez or not! Is the rigid collar helping at all? Do you wear it 24/7? Where did you get the aspen vista? I’m going tomorrow to find a more rigid collar. Have you asked this dic who diagnosed the eds and dysautomomia about a possible instability? What if at all did they say?
I’m not sure where to look for help with ruling out an instability . I’m not sure Heffez is exactly “down with the instability struggle.” Though i could be wrong. When I talked to him yesterday I explained my symptoms and told him I am worried about an instability, that’s when he told me to put the collar on.
Yes, I do feel I’m becoming detached from my life. I think it’s because I don’t have any degree of acceptance that this will be the rest of my life. I do have to disclaim some of my own negativity here and say that in the 4 short months since surgery I have had relief, weeks on end with the pain at a 0 - 2 and that’s not something to shake a stick at. I just can’t leave a stone unturned if there is a chance to better my future. My perfect outcome for myself here would be that this recent flare-up was just part of the healing process and my good days return. But I’m on the lookout for reasons why if it doesn’t go that way. It’s sounds like you are considering the surgeries?? I would like to know what you think, and certainly what happens on Monday. Ps I have read others posts about the “vibrating” that you mentioned, I don’t have it but I know others do. Look forward to hearing back
LOL That's Okay. I didn't know Kim was out till July. Well I guess I will have to wait. The Doctor who diagnosed the EDS and Dysautonomia definitely thinks I have instability. I had to switch home medical places once because the "home town " one is useless just like its ER :(. I Called a different place and they had it in in 3 days even ordered 2 extra ones. They were very helpful. I wear it 24/7 and it is adjustable and I have found my "comfortable" settings. If Dr. Heffez does not want to do anything with my other symptoms I am going to go elsewhere. I have heard of failed decompressions especially if you have EDS and I am worried that mine didn't work the first time. I will keep you posted .
Frickety frick! Dang, another disappointment. Don’t loose heart Beeba, we’ll find an answere. I talked to a spine clinic and they told me to consult a neurosurg. So that may be the route to take (i know that TCI is good at screening for instability). Another avenue may be to see an atlas-orthogonal chiropractor. I know the danger of chiropractic with chiari, however I was treated by one of these specialty chiros before I saw my surgeon and it helped greatly. They only treat the neck specializing in atlas and axis problems. There is NO cracking, the adjustments are done with percussion. You can’t actually feel it. Since you are hyper mobile it makes sence that you could possibly be “out of alignment” . When I met my surgeon for the first consultation he suggested that I consult with an atlas orthogonal before continuing on to surgery. I am actually seeing mine in couple of hours today and am going to talk to her about how one can rule out a diagnosis for an instability.
I am actually feeling a lot better and have decided to wait before I go ahead with finding another diagnosis for myself. Maybe it was just a rough patch in my post op process. I will let you know what she tells me about the instability. Hang in there Beeba. Ps they make rigid collars that don’t directly put pressure on the thyroid area, this might be a help and at the very least could be something you can say you’ve already tried when you do find the right doc to help.
Beeba, so I quizzed my atlas orthogonal chiropractor yesterday, her response: that’s something that needs to diagnosed through a neurosurgeon. So, to me, it’s looking like that’s probably