My ES Path (in one long thread)

General
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Thank you for the update! I love the doctor’s analogies. I was in a book discussion group yesterday, & we were talking about how “pictures” can enable us to understand situations or concepts more clearly than mere words. Your doctor certainly illustrated that well w/ his explanations to you!

I hope the current path you’re on leads to complete recovery even if it takes awhile still. You’re such a trooper for keeping your hopes up during this time & displaying optimism even though recovery is taking longer than expected.

:two_hearts: :pray:

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I really relate to your journey. I had surgery on the right side by the top surgeon in the UK back in Dec but I continue to have pain on the right side. It’s very frustrating.

I’ve been doing a lot of PT to keep my neck muscles strong and anti-inflammatories also help but the underlying pain remains.

Have you explored steroid injections into the upper cervical facet joints or prolotherapy?

I too could go for surgery on the left but I have absolutely no left sided symptoms so it’s hard to make that choice.

Anyway no solutions as of yet but literally feel your pain. Keep strong and please continue to share your updates. They are much appreciated!

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At this point, we don’t seem to feel that the facets are the issue based on where the pain is. My neck & spine doc feels that if it were truly a facet issue, I’d feel it more towards the back of my neck.

Further supporting this is the suggestion that the muscles/ligaments of c1-c3 are tight and in protection mode- so muscular vs joint.

I have had trigger point issues in the past…pain down the side of my hip/glute/thigh and it worsened with use (like vacuuming) and that took 1 1/2 yrs to find the issue which was a bad trigger point that when it was found under my lowest rib, not only was it far from the pain but nearly dropped me to my knees when it was pushed on. I’d had no idea it was even there because it was far from the pain. When it was released, the pain in my hip had immediate relief. I doubt this will be the case here… but maybe.

For now, we need to figure out what muscle is impinged/tight causing the pull on those cervical segments and find a way to calm/release it. Since I’ve been advised on c1-c3 being in protective state, I am leaning towards my levator scapula as one possible culprit as it connects to those vertebrae. Hoping the upcoming week gives more info.

I hope you too get relief soon. Our bodies can be so complex!

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Good luck with it all!

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25

So sorry to read you’re still in pain, that’s rough…we have had one member whose symptoms definitely crossed over & was much improved after his second surgery, but if you’re not getting any symptoms at all on your other side it’s quite a serious gamble! There have been quite a few discussions about prolotherapy- it’s helped some members can can seem to do more harm than good, so if you’ve not read them it might be an idea to have a look with the search function…
Thinking of you…

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Thanks Jules. Yes I’ve read a few accounts when the pain has switched sides prompting a second surgery but my pain is all on the original side so I don’t quite fit that route forward. The next most logical step is to have another CTV. Mr Axon has ordered one but it has been pushed back four times. I think due to NHS issues. I won’t be doing any further treatment like prolotherapy until the CTV is done. Hopefully it will get done before the end of the year!

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Let’s hope so, it’s crazy the waits!

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Hi friends!
I know it’s been quite some time since I touched base. I’ve been focusing a lot on finding answers to my pain. 32 long months later, I finally received a diagnosis today.

It took roughly a dozen PTs, 4 Chiros, 1 pain mgmt doc, 2 PM&R docs, 2 ENTs, a couple gastroenterologists, a neurologist, a neurosurgeon, two surgeries and a lot of medication cocktails. Don’t even get me started on the stress and anxiety.

Today I met with a neurosurgeon. He pointed out the degeneration of my atlanto-occipital joint, comparing it to that on the other side. The left is basically worn out. But because my symptoms aren’t “life threatening” such as no loss in ROM, nor spinal cord compression, I’m not at the point of surgery. If I were, surgery is serious and invasive; fusing C1-C3 to my skull and losing most of my ROM. This is as terrifying as dealing with the pain itself.

I’m left to figure out what conservative treatment entails…the neurosurgeon specializes in a narrow scope of surgical treatment only so conservative treatments really aren’t in his wheelhouse. He did suggest a few holistic approaches which he firmly believes need to be exhausted before considering this surgery.

So, I have a 2nd opinion scheduled for 1/3/23 and until then am exploring Botox injections, a very specific neck strengthening program (it’s like a non traditional strengthening boot camp just for cervical spine) and have an upper cervical chiro on my list to meet with.

I’m glad to have a reliable diagnosis but am crushed this can’t be fixed. To say the least, I’m in this fearful place of disbelief wondering how I can get even 50% relief. It is painful. Also acknowledged by this surgeon is the glossopharyngeal nerve involvement causing the burning. He said that is a nerve that they have to take great care of when doing surgery. I think I can say with certainty that this is the nerve impacted.

So, I wanted to come back and update so as not to leave others hanging on what the ultimate outcome in my case was. Closure here, and on to the next.

Best always to those who find comfort and answers here. My hope is that everyone finds the relief they need!

Peace & love.

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@Tjmhawk01 -

I was thinking about you last night & had planned to message you this week to check in. Thank you for the update. I am so sad that you have another major problem going on but am glad you took care of the ES problem so that is entirely ruled out. What a crazy ride you’ve been on but your perseverance has paid off. I’m really glad for that & also that you’re getting a second opinion. So important in these complicated cases!!

This is one of those situations where I wish radiologists were more curious or observant & would comment on things they see besides the specific thing(s) they’re asked to look for. It seems like the occipital/atlas problem might have been visible in your ES CT scan if someone was to have looked for it before now.

You have a great plan in place for moving forward. @Snapple2020 has had some good results w/ botox injections to help w/ neck/nerve pain. You could send her a PM to ask some questions. She’s been getting them for quite awhile. The right exercises are critical to make sure everything is as strong as possible & postural issues are addressed to help relieve any extra stress put on the weak area.

I will pray for your symptoms to be resolved non-surgically. You’ll be missed here! Please come back anytime you want to give another update or need encouragement or “listening ears”. We’ll always be here for you. :gift_heart:

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hawk, I forgot where you live?

Ive been giving consideration myself flying back to east coast (Maryland) to see a Fraser C. Henderson whom I understand is one of the best. One of his specialties is degenerative conditions of the cervical spine.
Check him out: Areas of Expertise – Metropolitan Neurosurgery Group

Ive personally been down the road of all the “conservative” treatments mentioned. Given the severity of the degeneration, I question if neck strengthening will help but you have to jump thru all the hoops. If it hurts more than helps, stop or take it very slowly. Im in probably my 10th round of neck strengthening and postural re-education (in the past 4 decades) right now to satisfy vascular surgeon to justify TOS surgery which is where I think I’ll ultimately end up. Ive come to believe after all the work ups the past 6 months, although I do have neck instability, is related to scalenes at base of my neck.

The botox has been helpful primarily for my TMJ and temporalis muscles as well as occipital pain. It was very helpful before Eagles surgery. I have had multiple combos of botox, steroids, nerve blocks for probably since late 2019 from a neurologist. YOU may want to consider a cocktail of steroids and lidocaine and botox. Any discussions about gamma-knife? ie: sever the glossopharyngeal nerve to stop the pain?

Ive had such serious pain flairs at times, I have considered gamma knife out of desperation so I feel for you. Have you seen a well versed DO in craniosacral therapy? It is hard to find a good one but I have got a lot of relief in the past from good practitioners.

There may come a time when your pain overrides your need of ROM. Im starting to get to that point with my elbow which has severe osteoarthritis. My hand surgeon says I need an elbow replacement it is so bad but that I will lose range of motion. It’s not as successful as hip and knee replacement. He advises against it however it is getting to the point where it is disabling me now and I am losing function in the arm and hand. This overlaps with probable nTOS and vTOS. along with neck/vertigo issues.

Don’t give up yet. Get a 2nd and 3rd opinion. There is more than one way to skin a cat (bad saying)…keep at it. :smiling_face_with_three_hearts: Feel free to contact me.

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@Snapple2020 -

I have a friend whose husband had an elbow replacement & it really helped him. I’ll ask her if his ROM has been affected by it as she’s never mentioned that. Just as w/ hip replacement, maybe there’s more than one approach & one may work better than the other. I’ll keep you post on this.

I’m so sorry to hear your problems are getting worse even w/ all the work you’ve done to try to resolve them non-surgically. Makes me sad for you. I guess we’re getting to the age where the wear & tear we’ve given our bodies over our lifetimes is taking its toll. Not fun, eh?! :roll_eyes:

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Yeah the joys of aging… :rofl: :sweat_smile: :smiling_face_with_tear: :smiling_face_with_tear:

Interesting about the elbow replacement.I will check into that further. Please keep me advised on that one! I meet with an orthopedic surgeon (neck) this month and will ask further about it.

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I’m so sorry that you have the answer but it isn’t exactly fixable, & sorry that the ES surgery hasn’t resolved the pain for you…you have been a great support on here & we’ll miss you. Will keep you in my prayers, God bless :hugs: :pray:

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wow - that is so similar to my own experiences with all of the doctors I’ve seen.(although your symptoms are different than mine) I am so sorry you had to go through this

I was referred to psychiatric treatment more than once and told I needed counseling. I did see a psychiatrist, to check the box, who basically said there’s no way this is anxiety or mental health issues. Anxiety doesn’t cause you to feel like you have a rubber band around your throat and to feel like your brain is about to come out of your ears from pressure - and that I was indeed a well-adjusted, stable and highly functional individual…It’s so frustrating, humiliating, and demoralizing to be told something like that!

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Glad that the psychiatrist did believe you at least! And you’re on the right path now :hugs:

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