Here at ER now - observation

[bdys]

Good morning. I met Dr Osborne twice via Zoom. He referred me to a neurosurgeon to assess my neck fusions, and hopefully, this neurosurgeon will partner with him before making plans with Eagle Syndrome. I’m in incredible pain and tears. Anyway, I will have an appointment with this neurosurgeon’s PA via Zoom tomorrow. I wish to get the fusion issues and Eagle Syndrome fixed now. Now, my lower back is hurting.

Questions:

• Should I talk to my local neurosurgeon about this?
• With ES symptoms and lower back pain, what are the tips and food ideas? My energy is exhausted. I feel like falling apart while waiting for the help to come. My legs, arms, hands, neck, and head are achy, with nerve pain, and so on. I want my smile and life back. My husband is upset to see me in pain and wants the surgeon(s) to get me fixed. I have been sitting and being a hermit lately. This is not who I am or what I stand for. I feel like I’m losing hope and optimism. My husband encourages me to stop focusing on pain. He knows it is not easy. Sigh.
• Anyone here may be something similar to what I mentioned above? If so, how do you accomplish while waiting for the plan a/procedures? I wish I could meet people like you to support and encourage me. Miss families, friends, and church family.
• My husband concerns of how we can spend for the procedures if that will happen like with Dr O and a neurosurgeon, plus a place to stay (AirBnB) and such.

[Isaiah_40_31]

@bdys - Your lower back pain may be due to poor posture you’re using to compensate for your neck pain. It is sooo hard to try to focus on something other than pain when pain is so severe. There was a man many years ago who was chronically ill. He saw many doctors & took many different types of medications to try to get well but just got sicker. He finally decided he was going to make himself well by laughing. He stopped focusing on his illness & started reading books that were funny & made him laugh, watching TV shows & movies that made him laugh & before long, he started feeling better. He continued working on his mindset to help it be more positive, & after some time, his illness went away. “Laughter is the best medicine” is an old phrase that may come from the Bible (see below). The man I referred to wrote a book about his experience, but I don’t know what the name of the book is. I have looked for it under the title of Laughter, the Best Medicine, but haven’t been able to find it.

Proverbs 17:22 - A cheerful heart is good medicine, but a broken spirit saps a person’s strength.

[Jules]

I’m sorry that you’re in so much pain still, but good news Dr Osborne might be able to help you… Like @Isaiah_40_31 says, the back pain may well be from being tense & holding yourself awkwardly because of pain, so maybe not mention it at the moment to the neuro, focus on the ES/ neck related issues?
Food wise, I would eat as healthily as you can, avoid processed foods & too much sugar as these can make inflammation worse. If you’re finding chewing or swallowing hard then smoothies with protein powder or protein shakes might be a good idea?
Try heat or ice if you haven’t already, & there are medications which can help, there’s info here if you haven’t already seen it:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I hope that your appointment goes well tomorrow, and if you can get surgery with Dr Osborne then it might be an idea to start a separate discussion to ask about info around the area when you travel there?

[Isaiah_40_31]

@bdys

My husband concerns of how we can spend for the procedures if that will happen like with Dr O and a neurosurgeon, plus a place to stay (AirBnB) and such.

It would be worthwhile talking to Dr. Osborne about what he would charge for a surgery he would do for you. I’m guessing it would be less than he charges for a styloidectomy because that’s already been done. Aren’t you mostly looking to have your surgical clips removed at this point?

I also wouldn’t worry about where to stay until you know if you’re going to be traveling to Los Angeles. If you do plan to go, ask his front office staff to recommend safe areas to stay or close-by hotels (sometimes hotels give discounts for people who come from out of area for medical care).

[bdys]

@Isaiah_40_31 and @Jules - I will respond to your posts. I promise.

Despite families, friends, and church groups preparing and gathering for Thanksgiving, my husband and I are staying home with a quiet Thanksgiving, no “gobble, gobble.” It has been eight years now that we have been staying home due to my horrible experiences and journey with neck fusions, and now to add ES (diagnosed last year).

You can see the left side of my neck, where a thickened vein or artery is visible. The skin on the sides of the vein or artery caves in, compressing something inward, which causes pain and soreness in my neck, throat, and even my ears and tongue. This is ridiculous and sickening.

Have a blessed Thanksgiving.

[bdys]

Quick question about the medications. I do still have ES symptoms. I am experiencing tingling, numbness, muscle tightness, and a pins-and-needles sensation. I’ve noticed that it starts with a sensation radiating from my neck up to my face and then down to my lower back and legs when I wake up each morning lately.

Medications: Hydrocodone with acetamin, Methocarbamol, and Pregabalin (ran out of Gabapentin

Each of these medications makes me dopey. I’m not sure if any of these medications can cause me to feel weird about breathing, or if the ES symptoms can exacerbate and cause weird breathing. The PT came to my home yesterday, and the vital signs and oxygen were good. Not a great feeling at this moment, and hopefully it will calm down.

How do any of you manage better without dopey and pain with nerve and pain if you are similar to what I am dealing with this moment? I took Pregabalin and Hydrocodone-Acetamin at five this morning. Then I woke up with nerve pain and pain. This is confusion. I’m unable to take those medications now. Scratching my head. I don’t know whether I should take Methocarbamol. I hate these medications and do not want them forever. I am feeling so tired and upset with a bit of tears at this moment.

Not to mention, the PT from home healthcare and outpatient PT will not touch my neck. The outpatient PT has been putting me on hold since this past summer, and now with home healthcare, PT will only focus on the lower part, but I still get help. I don’t understand why.

I have one more question regarding the adjustable bed (medium firm). With ES and neck fusions I have, this is where I am starting to notice waking up with nerve pain like I mentioned earlier, and pain lately. This is a scary moment for me each morning. It lasts for a while, and then I feel exhausted and sore. Please offer me (and for others in this group may feel this way) some tips, as well as positive and honest encouragement. Does this page have a subpage of tips on anti-inflammatory food recipes. For me, I do not eat spicy foods. My optimism and hope are becoming stretching out with exhaustion. Quietness.

[Jules]

I’m sorry that you’re in so much pain & can’t join in with Thanksgiving celebrations, that’s rough
The nerve pain medications vary so much with what side effects people get and how effective they are, so it really is trial & error and perhaps having to take different ones. Carbamazepine can be effective, but that often causes dopey-ness too- I guess you have to decide whether you want to stop the pain & be a bit of a zombie instead, it’s a rotten choice, & unfortunately there is no easy answer or quick fix… Amitriptyline works for me, and I’m very lucky that the low dose I need doesn’t give me side effects. There’s a list of other meds in the Newbies Guide Section, here’s a link:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
There’s some other suggestions for pain relief in there too, like lidocaine patches or gel. I’ve don’t know much about the other meds you mention, the Methocarbamol is a muscle relaxant so won’t actually help with nerve pain, but might help with the muscle tightness you get… Hydrocodone-Acetamin being an opioid often isn’t that effective with ES pain…
It’s unusual for ES to cause pins & needles in your legs, although some members have had symptoms like that. It could be that your posture is altered because of the pain you’re in, & this could be causing tense muscles which trap nerves? Or whether you have any other issues with your spine, but it sounds like the clips are the priority to fix for now. It could be that you’re laying awkwardly at night? But again, that’s a very individual thing & trial & error again to find a better position, and it may be that there isn’t the ideal one for you.
It could be that your vagus nerve is irritated and that could affect the sensation you’re getting with your breathing, but it’s good that this is has been checked & all good. It’s understandable that the PTs won’t do anything with your neck, & that’s probably for the best, as if the clips are causing your issues any massage or stretches etc could well aggravate things even more.
We don’t have any recipes on here I don’t think, there is lots of info about anti-inflammatory diets online. I think it’s best really to stick to fresh ingredients as much as possible, avoid processed foods and too much sugar. The keto diet (very low carb) can be helpful with inflammation. Can you eat okay, chewing & swallowing? Does the pain make you feel sick at all?
I can see what you mean about the shape of your neck, I’ve not seen that before, I’m sorry that you’re having to try & deal with all this. The best encouragement we can give you is to hang in there, it’s good that you’ve been able to speak to Dr Osborne, and praying that he can help you. How was today’s appointment? Prayers & virtual hugs for you

[bdys]

Hi @Jules

Thank you. I will see my pain mgmt Dr on Dec 17 and will discuss with him about the medications I mentioned. Right now, I am getting pins & needles in my arms, hands, and face at different times. I will look up the links that you mentioned.

I do recall that I have mild scoliosis in my neck and lower back, I think. L5-S1 is narrowing the space. I have had doctors telling me that those are mild and should not cause pain. For scoliosis, I have had that for years since I was 13. I don’t know if this came from my birth being premature. I am getting nerve tingling and pins/needles radiating down from my neck to my hands to my legs. This happened not too long ago, and I’m starting to have nerve irritation and pain, especially in the head/neck and ES-related. Weird and hurt. At this point, I am looking at the possibility of having surgical clips to remove, as you already know. I am also waiting for a neurosurgeon’s office in CA that Dr Osborne referred me to to call me back after they talk with Dr O. The neurosurgeon’s PA said they do not use Zoom for this. That neurosurgeon is Dr Ali Mesiwala. I am going to call Dr. O’s office to see if they can consider Dr. Todd Lanman, a neurosurgeon from CA. I know more about him than Dr. Mesiwala, as I have the option to request the reversal of the fusion to ADR, so that I can retrieve it in some way. The PA with Dr. Mesiwala will let me know when Dr. M can talk with me over the phone, but without using Zoom. While I still have ES symptoms, multiple surgical clips on the left side after shortened styloid and right elongated styloid, I am debating on whether to tell my local neurosurgeon about my reaching out to Dr O for ES and his referral to Dr M. I have an appt with my local neurosurgeon for follow-up for the post-op with left styloidectomy. So I am not sure what to do when I see my local neurosurgeon. Please note that the left styloid procedure was done by a local ENT surgeon (last-minute replacement when the other ENT surgeon was not able to do it at that time). Since some of you, including @TML, @Isaiah_40_31, and @Jules, have been offered to help me, I am grateful for that. I am ready to improve the resolution of surgical clips and address any other issues on the left side, the right styloid, and other areas on the right side, as well as explore the possibility of resolving the fusions. I am not sure which first, second, and third to be taken care of. I just wanted to breathe, relax, and enjoy. I don’t understand why the waiting game is too long, while I feel tortured.

Beautiful 67 degrees outside, but I am feeling low…sigh

As for sleeping, I don’t sleep well daily. Sigh. I’m not sure if lying back on a 30-degree adjustable bed is causing my spine issue(s). Good question about my spine. No sleeping position can help me fall asleep comfortably. I also struggle to sleep on my sides due to the ES issues.

As for eating, chewing, and swallowing, I can do these, but they are painful and irritating due to ES, surgical clips, a right elongated styloid, and who knows what else is moving up/down, and sideways. I can feel the swelling, a cave-in, pulling, a fast heartbeat at times, and so on.

You can see how my neck looks horrible below. The last pic was the night before I had an ACDF surgery in 2019. My neck now looks awful and painful

[Jules]

You might find @JPB @s discussion interesting?
Exploration/Clean up surgery - Dr. Osbourne - General - Living with Eagle

[bdys]

Hi guys. I haven’t been on this forum for a bit. I went to see a nurse practitioner for my local neurosurgeon to check on me. Now I am waiting for an appt with my local neurosurgeon regarding my post-op left styloidectomy with CC1 transverse after getting an X-ray. Some of you may already be aware that I have reached out to Dr. Osborne regarding ES. I am still waiting for a neurosurgeon that Dr Osborne referred me to, and he is waiting for this neurosurgeon to reach out to him due to ES and my history of neck fusion before doing anything with surgery. Now, the nurse practitioner for my local neurosurgeon asked me if I had heard about Bow Hunter’s Syndrome, because she said that I am the first patient with ES to her. I did read about the Bow Hunter’s Syndrome (rare condition). I am going to compare this syndrome and ES. They both are similar but different in some way. I don’t want to wait, wait, and wait. I have had enough of this on and on. I am planning on reaching out to a neurosurgeon’s office in CA to reach out to Dr Osborne. This is ridiculous waiting, and now this local nurse practitioner is adding something else like Bow’s Hunter Syndrome. She is now ordered me to go for PT and X-ray for a follow up with my neurosurgeon. I know I won’t be able to get help with PT because the PT and OT stopped me going to them until then ES is being taken care of. I haven’t had PT and OT since last late summer. Sigh.

[Isaiah_40_31]

I’m sorry one more possible diagnosis has been added to what you already know you have, @bdys. I hope the new imaging show negative for Bow Hunter’s Syndrome so you can get on w/ the neurologist Dr. Osborne has referred you to & ultimately to surgery or whatever Dr. O thinks is best to help relieve your symptoms. Such a difficult season for you! I’ll continue to pray that all this waiting you’re doing will lead to a wonderful end result.

[Jules]

It’s frustrating when doctors or other health professionals want you to jump through more hoops! To be fair, it’s good that they’re thinking outside the box and are trying to help you, but the issues you’re experiencing with the front of your neck & the pain you’re getting can’t be explained by Bow Hunters syndrome, so you would still need to pursue some sort of revision surgery/ investigations anyway. And as you say, you’ve tried PT, & although I don’t know much about Bow Hunters, it doesn’t sound like it’s anything PT would help with? I guess the best plan is to try and get that resolved & see what symptoms you’re left with, the look into it if you still have some dizziness? I hope that you hear from the Neuro that Dr O wants you to see soon…