Wanted to update everyone on my experience with having both issues! I chose to address the cervical spine issues…stenosis, reverse curvature, spurs, etc - all severe(fusion c3-c7). I had that surgery on November 7th 2019. Surgery went well - though a bit longer because it was such a mess. Problem arose when I the numbness and tingling overtook my entire left arm and hand one month post-op. Doc ordered a new CT scan “NOW” which ended up being 3 weeks later!!! He suspected hardware failure though he was certain that my bone density was much better than expected and was very confident about success of surgery. Turns out the OR nurse put me in the wrong size cervical collar that was crucial to a successful recovery - WHAT. How is that even a thing??? When I pulled a Shirley McLain on the hospital staff after leaving my doctor’s office, the hospital sent me to a specialty spine brace store a few miles up the interstate to be properly fitted (cost on them)!!! I demanded a written policy/protocol for assignment/selection of brace sizing selection and I still don’t have it. I was put in a Short which I believe they interpret a Small (big difference). I have a really long (and thin) neck - thus a short by anyone’s standards is INCORRECT! I am now much better, CT scan showed no issues but as I said, it was 3 weeks later so who knows what was going on at the time to cause the new numb/tingle. Going to PT twice per week now and just like the PT visits a couple years ago (what ENT who diagnosed ES recommended for treatment)…it has kicked the ES up. Right side has not bothered me since waking from the cervical surgery but the left side has never let up - still screaming at me and LOUDLY! Even the folks at the PT facility can’t figure out what is going on with the left side of my cervical spine near my skull base. It feels like bone but doesn’t show on CT??? ALL of my neck muscles front to back are killing me and continue to spasm. Doc just keeps telling me to keep at the muscle relaxer meds because he aggravated the heck out of all those muscles and that they would be sore for a while! LONG story short…I do have some relief from the surgery in that the chronic burning of the pinched nerves is gone but the left SP continues with very little relief. At this point I will take a baby step as long as it’s in the right direction! I hope this helps with those of us that are battling both issues. I chose to do this surgery first because it was easier and I found a neuro surgeon locally that I trusted. Onward and Upward!
Thank you so much for the update, kiZe6159. I’m glad everything got sorted out w/ your cervical collar & will be praying that PT will help w/o further aggravating the ES symptoms. It is possible that some of the neck pain is coming from ES & for sure what you feel at your skull base could be. What’s not showing up on your CT are the nerves that are irritated perhaps by being pinched between your styloid & cervical spine. Unless you have a CT w/ contrast these won’t be visible. Additionally, irritated nerves can translate into painful/tight muscles. I’m not saying this is a for sure, but it makes sense to me that if the neck issues aren’t related to your cervical fusion, once you get that styloid outta there, the neck/skull base pain should subside to some extent if not completely over time.
You have a great attitude. Yes, Onward & Upward for sure. It will be so nice for you when all these surgeries & recoveries are a thing of the past!
Thanks for the update; it was a difficult decision for you to know which surgery to do first, so it’s good to hear how you’re doing. It is tricky still by the sound of it to know which symptoms are from recovery from the surgery & which are the Eagles ones…but sounds like the left side is still making it’s presence felt & will need to come out? You said it feels like bone but isn’t visible on the CT- did you mean the styloid isn’t visible?
I’ll keep praying for your recovery & for the right decision to be made for more surgery.
Wow! Sounds like a lot.
I have to say I doubled over laughing when you said you pulled a shirley maclaine at the hospital!
I had a fall and was going to PT for awhile, and some of the exercises were pretty hard, and some hurt. I did not have the issues you have, but was working on cervical/shoulder. This was before I was diagnosed with Eagle Syndrome. I would have continued but for other health stuff coming up.
Hoping recovery will go more smoothly!
I also had a cervical fusion recently (c-4 to c-7 October 14th). I stayed in a hard collar for 12 weeks and a soft collar for 3 weeks. I also use, and will be using, a bone stimulator for 30 minutes once a day until June.
The doctor told me that I would be cursing him for 3 months and kissing him in the 6th month, and so far that has proven true! At the beginning the pain and numbness was severe, but it moved around a lot but I could tell something was changing compared to pre-op pain and numbness. Now the pain is mostly at the base of my skull.
I believe I have a lot of long-term postural issues to unlearn. (I kept my neck and shoulder muscles tense for fear of pain.) I am doing relaxation exercises and meditation to change my mindset and it seems to be working. Doctor says that physical therapy may not be necessary.
I do have ES, too, but at this point it seems minor compared to the cervical pain that I have lived with for the past 47 years. My thoughts are with you. Give it time, and trust that both of us will be feeling better in another few months.
I think there are several of us with both issues out there. I did worry that C2 & C1 were still going to be issues - don’t know if that is where my skull base pain is coming from or the eagle. My friend’s husband also used the bone stimulator but my doc has never mentioned it. I will have to remember to ask. I hope you are right and we both feel much better in a few months. And I agree, can’t expect to feel better in a couple of months from something that too 40 years to get there!
Hey Jules…I haven’t asked my doc what those SPs look like now on the CT, but am going to see him again first week of March and will ask him to look at them while he has my scan up. Even the PT folks feel the hard place on the left side of my cervical spine but can’t tell me what it is. It is really hard like bone and has been there for some time-couple of years at least. PT says it doesn’t move with the rest of my spine so I’m thinking it is the SP - just doesn’t show up as bone in the spot I think it is when I am looking at the scans. Guess I’m going to have to do another one of those doc visits where I am not leaving until you tell me what that is kind of thing!
So sorry you had to stop your therapy to address other issues. I hope all goes well with that and you are able to get back to getting that upper spine taken care of! I try so hard not to complain because I know folks with lower spine issues have a hard time even walking and thank goodness I don’t have that! I think I will do a couple PT sessions this week and then funnel that money ($35 co-pay) into something that feels better like a weekly or bi-weekly massage!
Hey there Ms. Isaiah_40_31
Thanks so much for your kind attention and assurances. As mentioned in my reply to Jules…I never quite get a hard answer on that spot that continues to plague me! I’m just going to have to put my foot down and dig in until I get an answer. I’m with you in that I believe it to be directly related to the left SP. Good thing I can’t get at it…
It is so odd that each side feels so differently and affects mostly different areas on my neck.
LOL - I would say that great attitude of mine comes and goes - depending on the weather and the day in general!
Thanks for the support from everyone here, I made it into 2020! Though I still have daily pain issues, knowing I am not crazy and there is hope on the horizon makes all difference. Truly a lifesaver!
A friend of mine who had fractures was not fitted properly with a body brace for upper back and she had exact same experience as you! Had to be refitted at prosthetics place that is more expert in fitting. Ive had neck (cervical) problems for going on 4 decades and just got Eagles diagnosis. So hard to separate out what is cervical, TMJ or what is Eagles and which came first.
My PT people feel the same hard bump under my left earlobe that has been a source of my pain for years. It clearly is not on the right side. Does not show up as bone on scans. So true about how the Eagles affects each side differently. Always a moving target with symptoms and pain. If were going crazy, we can all go crazy together!!
Not being a doctor, but finished with a fusion and
2 skull base bilateral ES surgeries, I would say the the hard lump under the earlobe is either part of an ossified stylohyoid ligament ( calcified ligament) in lay terms which is part of the eagle syndrome complex or an inflammatory response to all that is going on. I had the same directly under the earlobe after my surgery. For me, I think it was scar tissue after removing the stylohyoid.
It hurt and I have massaged it out. Before it was probably the stylohyoid ligament. The calcified ligaments do not show well on CT. My surgery removed everything from the skull base to the hyoid bone including a small bit of hyoid muscle. That spot still gets sore and feels better after I massage it. For myself, I have an arthritic misaligned jaw joint right near there so I suspect continued irritation, but I can now manage the spot. I had that surgery about 16 months ago. The right side was 10 months ago. I am beginning to look forward to trying Tai chi, pilates and swimming if I do not injure myself. It takes just a wrong twist to hurt my spine.
I have more spine issues. My whole spine has Degenerative Disc Disesse.I will be in therapy a lot or getting radiofrequency nerve ablations in the future.
Thank you for some great information & advice. I hope you’re able to do the exercising you’re hoping for.
I am sorry to read about the condition of your spine. My mom had some radio frequency nerve ablation done for her back pain. It did help.