Which Cervical collar OR traction to try and how to use?

[Tella]

There are many options. Soft, hard etc. i found this one, does it look good?
https://www.amazon.co.uk/Revolution...ocphy=9045456&hvtargid=pla-698539384203&psc=1

How long can u use them for and what are the benefits for specific conditions? Did/can they make any of u worse? If they alleviate symptoms is surgery the last step or is there anything else I can try that’s not as drastic?

I have ME, possible csf leak, possible cci etc etc...pain in neck and head, dizziness, can’t tooerate sitting up at all. Thanks

 

[YippeeKi YOW !!]

@Tella
I' going to tag in @toyfoof, who knows a lot more about this than I do, and is generous with her knowledge and experience in this.

I know that she's going thru a lot of pain right now, and a lot of arduous trekking to Drs appts, am hoping that she can respond, but if she can't, I'm pretty sure someone else will be able to help.

 

[Tella]

@Tella
I' going to tag in @toyfoof, who knows a lot more about this than I do, and is generous with her knowledge and experience in this.

I know that she's going thru a lot of pain right now, and a lot of arduous trekking to Drs appts, am hoping that she can respond, but if she can't, I'm pretty sure someone else will be able to help.

Thanks soo much!

 

[toyfoof]

Hi @Tella

I do have CCI and some other cervical neck stuff, but I only have a soft collar so I can’t provide any personal recommendations. However, I’m in a couple groups that discusses collars regularly, so I’ll share what I know.

I believe the main neurosurgeons recommend either a Miami J or Aspen hard collar. It seems to be personal preference on which will be best. The goal of the collar is primarily to stabilize the neck/skull so that if you do have instability, you are less likely to slide around, which then will hopefully help alleviate some symptoms (or at least prevent further damage). A secondary benefit of some collars is that they provide a light amount of traction which also can help to alleviate symptoms.

I think you can order these collars online but it’s ideal to go to a medical supply store or osteopath to be measured and make sure you get the correct size and fittings.

I’ve heard that the neurosurgeons recommend wearing the collar four hours or less per day, because any longer and you will decondition your neck muscles.

As for other options, it’s really a personal path based on your own symptoms and diagnosis. At-home traction, physical therapy, and consultations for surgery are the most common paths amongst the patients I know (for CCI; I really don’t know about leaks). I’m not sure where you are in your journey, but if you have a GP, physical therapist, or neurosurgeon you can talk to, hopefully they can help you navigate all this.

Are you on a Facebook? There is a good patient group that discusses all these questions and has some files with helpful getting-started information. I’ll send you the link to join if you’d like.

 

[Tella]

Hi @Tella

I do have CCI and some other cervical neck stuff, but I only have a soft collar so I can’t provide any personal recommendations. However, I’m in a couple groups that discusses collars regularly, so I’ll share what I know.

I believe the main neurosurgeons recommend either a Miami J or Aspen hard collar. It seems to be personal preference on which will be best. The goal of the collar is primarily to stabilize the neck/skull so that if you do have instability, you are less likely to slide around, which then will hopefully help alleviate some symptoms (or at least prevent further damage). A secondary benefit of some collars is that they provide a light amount of traction which also can help to alleviate symptoms.

I think you can order these collars online but it’s ideal to go to a medical supply store or osteopath to be measured and make sure you get the correct size and fittings.

I’ve heard that the neurosurgeons recommend wearing the collar four hours or less per day, because any longer and you will decondition your neck muscles.

As for other options, it’s really a personal path based on your own symptoms and diagnosis. At-home traction, physical therapy, and consultations for surgery are the most common paths amongst the patients I know (for CCI; I really don’t know about leaks). I’m not sure where you are in your journey, but if you have a GP, physical therapist, or neurosurgeon you can talk to, hopefully they can help you navigate all this.

Are you on a Facebook? There is a good patient group that discusses all these questions and has some files with helpful getting-started information. I’ll send you the link to join if you’d like.

Thanks so much! Sadly I’m not on Facebook.
Have u noticed if the collar has helped u? I’m afraid that I will become dependent on it and will feel even worse once it’s off and won’t be able to operate without it. Is it damaging at all to wear it for a bit each day all your life? I really don’t wanna have surgery so this seems to be the only way out...

 

[Tella]

Hi @Tella

I do have CCI and some other cervical neck stuff, but I only have a soft collar so I can’t provide any personal recommendations. However, I’m in a couple groups that discusses collars regularly, so I’ll share what I know.

I believe the main neurosurgeons recommend either a Miami J or Aspen hard collar. It seems to be personal preference on which will be best. The goal of the collar is primarily to stabilize the neck/skull so that if you do have instability, you are less likely to slide around, which then will hopefully help alleviate some symptoms (or at least prevent further damage). A secondary benefit of some collars is that they provide a light amount of traction which also can help to alleviate symptoms.

I think you can order these collars online but it’s ideal to go to a medical supply store or osteopath to be measured and make sure you get the correct size and fittings.

I’ve heard that the neurosurgeons recommend wearing the collar four hours or less per day, because any longer and you will decondition your neck muscles.

As for other options, it’s really a personal path based on your own symptoms and diagnosis. At-home traction, physical therapy, and consultations for surgery are the most common paths amongst the patients I know (for CCI; I really don’t know about leaks). I’m not sure where you are in your journey, but if you have a GP, physical therapist, or neurosurgeon you can talk to, hopefully they can help you navigate all this.

Are you on a Facebook? There is a good patient group that discusses all these questions and has some files with helpful getting-started information. I’ll send you the link to join if you’d like.

Also, the collars can’t actually make the cci better in any way, can they?

 

[toyfoof]

Have u noticed if the collar has helped u? I’m afraid that I will become dependent on it and will feel even worse once it’s off and won’t be able to operate without it. Is it damaging at all to wear it for a bit each day all your life? I really don’t wanna have surgery so this seems to be the only way out...

I rarely wear mine — just for car rides. It’s more of a safety measure to keep my neck from jostling. My main issue is cervical stenosis lower down on the neck and my surgeon recommended the soft collar for that. It does seem to keep the pain from spiking, a result of keeping my neck from moving around, I suppose.

I think that fear of becoming dependent on the collar is rational and something to watch out for. I don’t think it would be damaging exactly, but if your muscles weaken as a result of wearing it then you will be in danger of the instability getting worse, probably. I think you need to get some medical advice before planning to make it a daily part of your life. Depending on your ME severity, you may be able to tolerate some physical therapy exercises to strengthen your neck and core which could help stave off further damage.

A lot of CCI patients have found the physical therapy program in this book to be beneficial: https://smile.amazon.com/Living-Lif...ords=Mulvaney+Eds&qid=1571876082&sr=8-1-fkmr0

I haven’t tried it myself so can’t offer my opinion.

Also, the collars can’t actually make the cci better in any way, can they?

I don’t believe so. The report I got from the neurosurgeon with my CCI diagnosis states that surgery is currently the only proven treatment for advanced cases of CCI.

 

[Tella]

I rarely wear mine — just for car rides. It’s more of a safety measure to keep my neck from jostling. My main issue is cervical stenosis lower down on the neck and my surgeon recommended the soft collar for that. It does seem to keep the pain from spiking, a result of keeping my neck from moving around, I suppose.

I think that fear of becoming dependent on the collar is rational and something to watch out for. I don’t think it would be damaging exactly, but if your muscles weaken as a result of wearing it then you will be in danger of the instability getting worse, probably. I think you need to get some medical advice before planning to make it a daily part of your life. Depending on your ME severity, you may be able to tolerate some physical therapy exercises to strengthen your neck and core which could help stave off further damage.

A lot of CCI patients have found the physical therapy program in this book to be beneficial: https://smile.amazon.com/Living-Lif...ords=Mulvaney+Eds&qid=1571876082&sr=8-1-fkmr0

I haven’t tried it myself so can’t offer my opinion.



I don’t believe so. The report I got from the neurosurgeon with my CCI diagnosis states that surgery is currently the only proven treatment for advanced cases of CCI.

Thanks so much for all this useful info. You’re very kind!

 

[Rufous McKinney]

I rarely wear mine — just for car rides.

I"m investigating something for car rides... when I visit my daughter and its like all 4 wheel drive. Plus potholes and 400 year old Cantera stone.

Hope to learn more if the PT comes thru next week. Meanwhile: may all necks IMPROVE forthwith.