Clicky Neck

[mishmack]

I know this sounds weird but does anyone elses neck click and grind?  I have neck pain anyway with the chiari but my neck needs cracking and it grinds together when I turn my head.  I have been told by a Chiropractor that my head does not fit on my neck - how attractive does that sound I feel like the hunchback of Notra Dame!!!

Thank youxxx

[selmaS]

Hi and welcome to the Chiari forum.
Not all NS's are qualified to do the decompression surgery.... you need to find a true Chiari specialist one that will look for and rule out ALL related conditions . And although it is possible to have Chiari and not need surgery, but without all the right testing  there is no way to know if the surgery will be a benefit.Many actually can get worse post op.
Have you had a CINE MRI?

[Ama313]

I saw a neurosurgeon, who requested the CINE MRI. She sent me to their hearing & balance center for vestibular testing (I haven't had that done yet) but I was amazed that the doctor and nurses there knew what Chiari was. As far as a Chiari specialist in Missouri, I don't believe there are any.

[selmaS]

Most of us have that same issue and have to travel out of state to get to a true Chiari specialist. I went out of state 10 years ago this coming May......and  all these years later I feel I would have to go out of state again should I require any further Chiari related surgeries.
Check with your INS to see where you would be covered to go.....
Another possibility is to send your MRI's to a Chiari specialist for review or to consult with your Drs there.

[KerriC1]

I’m in Missouri and have seen many NS’s but none of them seem to know much of what chiari is let alone the effects of it. The one that did seem sorta knowledgeable was scared bc of my EDS and kinda showed me out the door with a “watch and see” approach. I went out of state for the first surgery and gonna go out of state for the second

[Ama313]

If it's not allowed to say your NS's names on here, can tell me which cities or states you traveled to so I can narrow down my search for a specialist? Great idea - I'll ask my doctor if he can research and find one to send my MRI's to.

[selmaS]

Check with your INS to see where they will cover you and then let me know where you might like to travel to , I'll send a list if one is in that area.....I personally went to NY, to the Chiari Institute on Long Island.

[VeronicaCD]

I to have always had a clicking and horrible grinding noise. I finally received a diagnosis to my ongoing issues and it's a chiari malformation.  I know within the last 6 yrs I've seen chiropractors for several back neck and nerve issues... the last 3 times I had my neck adjusted within 36 hours I was GUARANTEED a migraine.  Now I know why... and it was not 1 chiropractor and his/her techniques... I seen 2 separate drs in different states.  

[selmaS]

Hi and welcome to the Chiari forum.
Yes, unfortunately Chiropractors are not the best for those of us with Chiari the manual adjustments can make things worse.

Sorry you had to go through that before you found out the why to it all.

[Ama313]

For 25+ years, I've suffered from migraines, pain at the very top of my spine, throbbing/heartbeat in my right ear and neck that I feel and hear, loss of balance that only lasts a few seconds but is enough to cause problems. I've always just dealt with it as best as I could, thinking it was due to a car wreck at age 18 and abuse during my 1st marriage. Earlier this year, I saw a different doctor who did the usual neck x-rays (the most anyone had done prior to this) but he then sent me for an MRI of my neck and I was diagnosed with Chiari Malformation, 7mm. I saw a neurosurgeon after that but he acted like I was wasting his time, telling me that I asked good questions but I didn't need surgery and that was the end of the appointment. I've gotten very little information from the medical field but plenty of sound advice on here, thank you to everyone!

[4inline]

I have had clicking in my neck for years...like way up high, almost in my brain.  Duh, I finally realized that it kind of is my brain clicking.  When I would run my 'head' would click with every step.  When I turn my head, not every time, my head clicks.  I've done this for years and always wondered what it was.  Even after dx with CM1 about 5 years ago I didn't put it together.  I only had headaches and achy neck and was told that's all I would ever have with it.  Duh again.  I'm having a whole host of symptoms now for several months, won't go into it, and still didn't connect it until about a month ago.   "I'll bet that's the Chiari!"  Good to know that we're not all alone.

[pdxmomof3boys]

After surgery mine cracks and clicks so bad! Sometimes followed by a head rush or tingling in my face. Never really had this much before chiari, so I'm guessing it's totally related ... YAY! I have been told to NEVER let a chiro touch my neck. Maybe some strengthening exercises from PT? THat way muscles can hold up your head that it too big for your neck :)

Good luck and take care...I've missed you guys! Nice to be back on here!

Rosemarie

[linnielou232]

I also have this problem.  Mine feel's like it need's to be cracked, so I move it around trying to get some release, but all it does is feel more cracky.  I thought I was the only one with this problem.  I wouldn't let your chiropractic crack it.  I have done reseach on this and they say ABOLUTELY no chiropractor.

[*Stormy*]

My neck clicks and grinds too and still does after surgery. I have to agree it is not a very nice feeling or sound!! I wonder if it is not lack of cartilage or something b/c it feels like bone rubbing on bone to me. Yes, just another lovely effect of Chiari!!

Carolyn

[mishmack]

Thank you everyone I really can't believe it I thought I was developing something else as well - this has never been explained to me but then again not much has!!

It has been some years since I have been to the chiro before I was diagnosed.

Thank you all once again you have saved me from a fruitless visit to the doc'sxxx

God bless you allxx

[shanmomof3]

Yes, my neck clicks or pops and grinds as well. But, like wolf said i would be very cautious about using a chiropractor! Blessings ~ Shannon

[ChiariWolf]

Yes, many clicks, crunches every day. One word of caution though, I do think that Chiropractors have their place. However, you may want to do a little research before allowing them to touch your neck if you have CM dx.

Wolf