Any success with cervical prolotherapy?

General
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Has anyone had any success with cervical prolotherapy injections?

I have bilateral IJ compression but also loss of cervical lordosis and my neck almost looks like I have military neck on CT scan. I also have forward head posture like due to EDS and computer/phone use.

I am really scared to have surgery and C1 shaving and curious if anyone has had success restoring lordosis to their cervical spine with aggressive PT and prolotherapy. I’m thinking if I could move my spine even a few millimeters back to where it should be that maybe I could decompress the jugular veins slightly and help my symptoms.

Any success stories out there?

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Good questions. PT is more likely to help than prolotherapy which seems like it’s good in theory but the majority of our members who’ve mentioned it have said they wasted a lot of money on it w/o any help from it. Neck lordosis can be regained through PT & the exercises aren’t strenuous. Several of our members have mentioned the Denneroll (https://www.denneroll.com/cervical-combination-order) as being helpful. My chiropractor also recommended it to me. @vdm also posted a lot of information about postural corrections that can help with neck/shoulder problems that contribute to symptoms or are caused by ES:

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I did not have much success with prolotherapy injections. I do think they can have a role, along with physical therapy, upper cervical chiropractic, curve correction, etc but a lot of people cannot tolerate physical therapy with severe intracranial hypertension or CSF leaks.

A lot of people develop adhesions or scarring around the jugular veins or lymph nodes compressing them. In these cases, you can’t resolve it simply by realigning or strengthening the ligaments in the cervical spine.

Military neck is common with this condition but it doesn’t necessary indicate ligament instability. Your body can create a lot of muscle tension in the neck as a protective mechanism as a response to jugular compression and/or CSF leaks which can cause a straightening of the neck and loss or cervical lordosis. This may improve after fixing the jugular veins and patching the leaks.

Another thing to consider is whether you have anything in the lower spine that could be affecting cervical alignment. Things like occult tethered cord, lumbar CSF leaks and tarlov cysts can cause chiari/brain sag and affect the entire spinal alignment.

I think the proper order of treatment should be:

  1. Jugular decompression
  2. CSF leak repair / occult tethered cord release
  3. Deal with residual instability with prolotherapy, physical therapy, curve correction, etc

I think people have found that it’s very difficult to resolve jugular vein compression nonsurgically in most cases.

If you wanted to try something non-surgical it may be worthwhile to get an adjustment by an Atlas Orthogonal chiropractor. You can tell them you have jugular compression and they can try to adjust your atlas away from the jugular.

It may help decompress your jugular to some extent. It could also indirectly assess the health of your ligaments. If your atlas slips out of alignment immediately (or shortly) after your adjustment, you can suspect ligament weakness. If you’re able to hold your adjustment between appointments this may suggest your ligaments are doing their job pretty well.

Either way, it’s much less expensive than prolotherapy to test whether you can improve jugular outflow non-surgically.

I’m two months out from right jugular decompression surgery with Dr Hepworth. In my case I had an “osteophytic and hypertrophic” C1 causing jugular compression as well as lymph nodes and scar tissue. The transverse process of my atlas was literally adhered to my jugular presumably due to a long-term process of inflammation and scarring.

I could have done all the curve correction, AO adjustments or prolotherapy to strengthen the ligaments I wanted, it wasn’t going to restore my jugular outflow.

Nobody wants surgery obviously, but I do think this is a safe procedure with a good results for most people if performed by the top surgeons.

Hope this is helpful. I’ve been thinking about this a long time and it took a long time for me to figure out out how my medical problems developed.

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Thank you so much for such a thorough and thoughtful reply.

Can I ask how you are doing two months out from surgery? What were your worst symptoms and has anything improved?

EDITED: I actually just read a response you posted on another one of my posts 2 weeks ago. Hopefully you’re doing a little better.

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Many things have improved and I continue to notice ongoing changes.

I had sinus surgery at the same time but no skull base CSF leak (he looked). I did have ethmoid and maxillary sinusitis which he fixed.

My right jugular was almost completely occluded, partially from C1 but also from scar tissue and lymph nodes.

Things that have improved:

I sleep much better. I had terrible insomnia and almost never slept well before the surgery. Now I can breath out of my nose when I lie down and my brain can drain much better.

There is visibly less swelling on the right side of my face and neck. The combination of the sinus disease and blocked jugular caused me to be unable to drain waste from my head. I felt a huge toxic load and lymphatic congestion that is massively improved and continues to improve.

I feel much more calm. It’s like my nervous system is working much better.

I’m sure there are many other things that have improved that I can’t think of at the moment. It’s still relatively early but no setbacks or complications with the surgery or recovery.

However,

The biggest issue is that I almost certainly have a spinal CSF leak and probably a pretty major one. And the low pressure symptoms have gotten much worse. I need to be lying down most of the time.

I’m not too discouraged because I already suspected this but the jugular compression was “hiding” the leak. Now I present much more clearly as having intracranial hypotension so I suspect doctors will recognize this and locate it pretty quickly. I’ve already been working with Stanford and Dr Caroll on this so I think I’m in good hands.

As terrible as spinal CSF leaks are, and they are really bad, I still feel better on balance than I did before surgery because I often feel pretty good when I lie down. And I can sleep.

Before surgery I felt bad all the time. I either had unbearable high pressure or low pressure and I kept swinging between the two. I was in fight or flight mode constantly, and hardly slept so I was exhausted all the time.

When I’m upright for a while and I go into severe low pressure I will feel absolutely terrible with all the symptoms of brain sag, dysautonomia, breathing and heartrate problems, feeling like I’m passing out. It’s terrible.

But when I lie down, I feel better. These bad moments are shorter and I am able to manage my symptoms by resting more.

I also understand what the cause is so I don’t worry as much.

I may also have some abdominal compressions which are yet to be determined. Dr Hepworth asked me to get an abdominal CTV to check.

So I still have some work ahead of me but I feel so much better than I did before. I feel like one major issue has been fixed and the rest will be more straightforward.

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Amazing post truly amazing. How did you discover your CSF leaks? What imaging did you have done for them?

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I haven’t exactly found the leaks yet, but the changes in symptoms after surgery makes it pretty clear.

Dr Hepworth had thought I had a spinal CSF leak based on my brain MRI. I had a BERN score of 8 apparently:

https://radiopaedia.org/articles/bern-score?lang=us

My current theory is that I likely had a spinal CSF leak first, and the vascular compressions developed as secondary compensations.

I trace my issues back to a lumbar spine surgery I had when I was 19. I had no issues before that. I don’t have EDS or other connective tissue disorders to my knowledge and was pretty healthy growing up.

But I developed sciatica pain down my right leg and a neurologist attributed it to a bulging disc at L5/S1. So I had a microdiscectomy to relieve the pressure on the nerve.

This is a supposedly fairly non-invasive surgery but it didn’t seem to help much. I don’t recall if it helped my sciatica pain at all but I don’t think so. I didn’t feel quite right after surgery but the pain wasn’t too bad so I just decided to get on with my life for the time being.

About 8 months later as I was going back to college, I was increasing my activity levels, going to the gym more and being more active than I had since my surgery. Suddenly, I woke up with terrible headaches, venous congestion in my neck and numbness in my arms.

What I think likely happened is that I did develop a lumbar CSF leak from my surgery but it was slow flow and didn’t cause severe symptoms at first. But it was causing subtle biomechanical compensations as my body was adapting to CSF circulation issues even though it hadn’t progressed to serious headaches yet.

I suspect my increased activity caused a sudden worsening of the leak and then rapid deterioration of symptoms.

I was later diagnosed with thoracic outlet syndrome and (eventually) Eagle Syndrome. I was born with cervical ribs which predispose me to thoracic outlet syndrome.

So it was like dominoes where one thing led to another. And once you have a spinal CSF leak and venous outflow obstruction, it’s almost impossible for doctors to figure out what happened since your intracranial pressure is technically “normal” and your brain imaging doesn’t show clear signs of intracranial hypertension or hypotension. Especially years ago when this started.

Some of this is speculation but I think it makes sense.

I also have a tarlov cyst at S2 in my sacrum, right below the surgery I had at L5/S1. The close proximity of the tarlov cyst to my surgery site gives a lot of credibility to the idea that I probably have a leak.

My tarlov cyst may have been present before my surgery. In this case, it was likely the cause of my sciatica pain and the bulging disc was an incidental finding that was wrongly attributed as the cause. In this case, operating very near a tarlov cyst without knowing the cyst was there could have easily predisposed me to a leak because the CSF pressure would have been higher than normal and the dura perhaps weaker in that area.

The other possibility is that the tarlov cyst developed after my surgery. In this case, localized CSF pressure changes due to the surgery is probably the cause. And a CSF leak right above the sacrum could easily account for that.

This is my current working theory. I’d be curious to know if anyone else feels they may have had a spinal CSF leak first, and then developed Eagle Syndrome and other vascular compressions afterwards?

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@jrodefeld - One of my doctors also suspects I might have abdominal compressions, ie May-Thurner syndrome and/or “pelvic congestion.” Is Hepworth thinking you have either of these and do you mind sharing symptoms that led to your abdominal CTV order? I have a weak leg & numb feet. My first appointment with Dr H will be in about 10 days and wanted to get his thoughts. In the meantime, my local doc is ordering ultrasounds for these. thanks!

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Hi! Welcome! I think your comment was a reply to my original question so the person you indicated to ask this question to might not have seen it. Just wanted to let you know in case you want to retag them or reply directly to them so you can get an answer. Thanks!

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I have abdominal swelling and pain after eating in particular. Also, swelling and cramping in the legs.

So many of these conditions have overlapping symptoms but since vascular compressions seem to lead to other vascular compressions, its definitely worth checking out.

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Just out of curiosity: How can vascular compression develop as a secondary compensation after having a leak? I dont understand the mechanism behind it.

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Vascular compression of the internal jugular vein comes first. It causes blood & CSF to back up in the brain causing intracranial hypertension. To relieve the extra pressure, a hole can form in the membrane around the brain through which some CSF fluid is released. The release of fluid can then cause a low pressure situation to occur. If enough pressure is released, the hole in the membrane can self-heal which causes high pressure to form again so it can be a vicious cycle. This process can also continue for a few months after decompression surgery as the vascular system heals & the blood/CSF re-balance in the brain/ spinal cord.

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