Post Op- Dr Ryan Osborne- Current recovery-WHAT I HAVE LEARNED***

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*** VERY LONG READ- WHAT IVE LEARNED**** MOST IMPORANT PART :slight_smile:

I have been on the forum non-stop. Since only discovering my diagnosis ~ 3 weeks ago, after I confirmed my diagnosis with Dr. Middleton in Florida. I keep contemplating on when and what to post. But given my recent conversation with Wendy ( whom I cannot thank enough for her support ) I figured I’d start here.

((( I plan on adding more info on my sx and journey later. For starters, I am a 36 yr old female from San Antonio Texas whose been looking for answer the last 2.5 yrs and have traveled to 3 different states to get here, seeing over 28th different specialists at that. A story for another time :slight_smile:

The Left styloid was removed with Dr. Osborne on the 25th. The procedure I’d say was very successful. I cannot speak highly enough about both Dr. Osborne and his team. The procedure took 3 hours, due to my small frame he did have difficulty with removal. The top half of the styloid needed to be removed piece by piece but he was able to removed everything from the base of the skull. He said in the next 5 days there would be a lot of answers. I’m normally am one to have a tough recovery, swelling always tends to be 10-fold with any sort of surgery. However, my swelling 5 days out is completely gone. The “head bra” has been my worst enemy, but it helped tremendously with swelling. Had to keep that sucker on for 5 days straight! I did use my pain meds for the first day and half the 2nd day, but since have been sticking to only Tylenol. I never had a feeling of something in my throat till after the procedure, Dr. Osborne felt it was just throat irritation but after the drain removal the feeling was gone. The incisions have some tenderness, but them and the ear are still mostly numb. He stated come day 3 he anticipated possible palsy due to the movement of the nerves, but that it would resolve in the few days to weeks. Unfortunately come day 3, I did indeed realize my lower bottom lip (right side) doesn’t match my left lips smile. (Husband is finding loving humor in this- its truly pretty small). For now the biggest discomfort I have is jaw pain, worrisome because that fear of TMJ and trauma is what started all this. I did have a dizzy episode day 2… but thankfully it resolved within a few hours, I mention this because of a recent post I came across.

Yesterday…
In the last 5 days its really hard to say what I am feeling.( still have my left styloid to be removed) The throbbing nerve pain in my teeth and jaw is gone. I do have moments when I feel tenderness there but its not the debilitating nerve pain I suffered from. My resting heart rate of 110 is now 78. The tinnitus is definitely very must present and perhaps a little louder. We attempted a causal 2 walk mile yesterday that did indeed leave me pretty winded, I have since stuck to napping and allowing more time to rest. I don’t know if is in my head or not, but now there is 100% awareness to left styloid when I was 100% sure my right was the one to target.

Today…
I had my left styloid removed roughly 10 hours ago, 6 days after my right styloid removal. My right at this point is still having mild jaw pain, but the bruising is apparent so it makes some sense. The left styloid was the lesser of the two in location and size so Dr. Osborne stated everything went smoothly. I am not experiencing any pain at the moment but am also taking my pain meds every 6 hours as prescribed. I currently have mild swelling but my head wrap is doing a great job keeping that controlled. Zero drainage in my tubes. Im sure there will be more swelling tomorrow, hopefully no need for stronger meds. The biggest discomfort for today is 110% my throat! Ibuprofen is allowed since I’m done with surgery and having smoothies and popsicles has helped. I dreaded re-agitating my throat after the first side but was glad things were done 1 at a time. The incisions are about 2 inches in length, they start at the edge of my face just before my ear canal down to about an inch below the mandable corner. Stitching looks great and so far google photos show minimal visibility but that is the least of my concerns.

WHAT I LEARNED- Dr Osborne shared with me that the incidence of 4% of people is a lot closer to 8%. That the majority of these cases are found via dentist and chiropractors. Another key issue is once the scans are done to many radiologist classify findings as “normal” and the patient never finds help from there. ((( I had multiple CTs x rays, mris and panos done, I was also told it was normal from various specialist, that’s when we flew to Florida to see Dr. Middleton for confirmation on his ordered CT))) He also expressed that not having styloid removal was not addressing the big elephant in the room. That’s what made my decision among others to move forwards with surgery as opposed to CCI tx and prolotherapy. He also expressed that a good 40% of people with ES have an underlying connective tissue disorder! ((( I just found out I had a 10 degree rotational aspect in my ribcage… “too small to be considered scoliosis” - per spinal specialist, yet its what caused my snapping scapula sx i also had a few months back!— Which is you guessed it, caused by Scoliosis, its what also LEAD ME TO FINDING EAGLES!) - I Mention this because of a recent post about shoulder pain. one very important thing he said to me was…ONE SYMPTOM I SEE ON ALMOST EVERY PATIENT IS THE “FEELING OF IMPENDING DOOM.” When he told me this, I could no longer hide my fears, he saw right through the pain and trauma, I immediately was consumed by my emotions and burst into tears. It was this statement that convinced me that he was going to be the one I needed to see. When I thanked him for working me in on a SAME DAY apt on a Friday afternoon at 6:00PM after a full day of surgery, he told me a story of a 18 yr old patient who took his life. He stated " I couldn’t get to him in time" - I have no words. What I can tell you, even before my recovery, I know this Dr. has saved my life and a found faith I never had before. He may not be easily accessible but I cannot stress enough how much I would recommend just a telemedicine appointment with him to finally have your questions be answered, that alone can help the healing.

Protocol- is a 1 day follow up to remove head wrap and add " head bra" 2 day follow up to remove drainage tubes. Head bra is to be keep on for another 48 hrs. ( Wrapped a good 5 days in total.) He stated I didn’t need to sleep elevated but I still did. I also never used any ice. ( head wrap was too thick to help) He does prescribe pain meds which he stated most patients only needed the 1st day ( and has been pretty true for me) and weeks course of oral antibiotics. After the head wrap is removed he advises on leaving the incision site open with only a minimal topical antibiotic OTC cream to be applied AM and PM.

There are plenty of ups and down moments but at this time I can genuinely say I’m happy. Each day is a different day and I am cautious as I know there are still plenty of painful days ahead. I am so thankful for having this community to help me through this process and am open to any and all questions. Thank you to all of the amazing, caring, intelligent people who contribute to this forum. This forum is truly saving lives.

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Greetings Friends - New Here
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I’m so glad that you’ve had your second surgery, and have been able to share that with us so soon! I’ve been praying for you & am thankful that you’re through this and are hopefully still seeing improvements!
Interesting that Dr Osborne believes ES to be more common than most doctors think, we believe that too, & that it’s just dismissed and underdiagnosed…How sad about the patient he couldn’t help :sad_but_relieved_face:
I did feel that I was going to die with the horrible sensations I was getting when I had IJV compressions, so can definitely empathise with that.
Dr Osborne sounds a very remarkable doctor, & very caring, we’ve heard such good things about him, it’s just a shame about the insurance issue or I’m sure more members would see him for surgery…
I hope that you continue to heal well and see improvements with your lip function- there have been posts about that & info about helping wake the nerve up later down the road if it doesn’t resolve. Take care & keep sharing your recovery :hugs: :folded_hands: :bouquet:

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I’m so touched by everyone in this group and appreciate your prayers immensely.

All this new found blood flow to my brain has send me down a mad spiral of nonstop research! lol, I need to slow myself down. One recent journal I found noted as high as 20% of people show elongation ( regardless of symptomology).

Insurance is a huge point I didn’t even touch on. We have BCBS PPO and Dr. Osborne was in fact out of network. I have my husband to thank for this because he did it. But there is such a thing as a PPO Waiver, or Out of network exemptions, you know, the things insurances don’t want you to know about.

You basically ask for permission to use a doctor out of network and still get in network coverage. The doctor may still have X as a fee that needs to be paid but it forces your insurance to help cover more of the costs. He called the insurance, got a case number going and requested all the info needed. Letter from the provider, diagnosis and procedure codes were sent and he wrote a letter stating our journey and the 500 doctors we had seen and paid for out of pocket prior to get this diagnosis

If there is a "rarity: of the condition, if the only in network specialist is more that 150 miles away, and if there’s to much of a delay in the date you can be seen then you can qualify.

That’s exactly what he argued in the letter. We actually do have 2 doctors in my city but non were specialist who had conducted as many surgeries as Dr. Osborne and neither could get me in much less for surgery in less than 6 months. Did i mention he got this done in less than a week. You have to call daily, and express the urgency, in this case the surgical date was a week away. So each call forced them to escalate the case and the day before the surgery at 5:00PM we got the call of approval!

This information is vital, I can also share the letter we sent. Let me know who and where it would be best to send it too.

Thank you again, for your well wishes and prayers.

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Hi @vcp02. Thanks for posting about your experience. Similar to you I’ve seen and traveled to quite a few specialists. I also went the TMJ route and spent $6,000 on mouth guards which actually made things worse for me.
I’ve had a couple of consults with Dr. Osborne, and I’ve also found him to be one of the kindest and most open-minded specialists in my journey. I’m in the process of scheduling my procedure at the moment. I’m in California, but I live up in the bay area, so I’ll have to travel down to LA. Do you have any recommendations for accommodations in the area? My wife will travel with me and likes to have a kitchen, so I was thinking of finding an Air BnB.

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Hello!

We are from Texas, so ill start with that. It is quite a different world here, and what’s with the parking lol! Despite this being a heck of a trip we truly did enjoy our experience here in Cali. I love to travel so we decided to make a “vacation” out of it. After comparing hotel costs and air bnb we decided to splurge a little more to have more room. A hotel room with only a bed wouldn’t work for the 10 days here. We decided to stay at an Air bnb on Manhattan Beach “The strand”. 3608 is the condo we found, has a full kitchen, living room, bed room and bath, with an open balcony facing the ocean view :). Basic accommodations, a little on the older side but the sound of the ocean and the long walks help me find some peace. One thing I did not know was that there was no central air in this condo. Days stayed around 75 with a low of 60 and a high of 80 indoors so double check that depending on your preference, we kept the balcony door open for the breeze. Ohh and apparently the beach has an ant problem, didn’t love that. Parking was an issue but thankfully this condo came with a parking spot, others had to keep moving cars every 2 hours also something to note! We are walking distance from all the restaurants and became great friends with our baristas at the coffee shop. You will have a pre op, and 2 post ops with Dr Osborne at the sepulveda medical building which was only about a 10 min drive from our location. Miracle mild medical group is where you’ll have your surgery and that was about a 30 min drive. X 2 for each side, mine was 5 days apart. We leave tomorrow! You are in great hands.

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Thanks @vcp02. LA is a little different from the rest of Cali, but is definitely a fun spot. The parking is terrible anywhere near the ocean! We lived in LA for a couple of years when I was a kid and I remember even back then it was a challenge to find parking for a day at the beach.

Thanks for the info about the surgery locations. It sounds like your recovery thus far hasn’t been that much more challenging than expected? I’m eager to hear how you progress over the next few weeks and months. It seems like a keyword with this condition is variability. No two people experience it the same which seems to be a significant problem in getting the right testing and diagnosis. As such no two people heal the same way. Having a good surgeon seems to be a huge component though. The one surgery I’ve experienced in my life was performed by an excellent physician. I was extremely lucky as it was an emergency, and he just happened to be on call that day. I was really hoping that would have been the only surgery I’d have to go through in life. However, this condition seems to be getting more complicated with time. I’m grateful there are doctors like Dr. Osborne that are willing and capable of doing this procedure.

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I will definitely keep you updated as the weeks and months go along. There so much feeling of uncertainty, and after every failed appointment you begin to question what you’re feeling. Dr. Osborne never promises anything, but rather waits to over deliver, which is difficult given our position. The reality is that he has seen so many crazy things get better and there’s no real understanding of it all. Today he was helping a women undergo her 3rd surgery, 2 prior surgeons failed to cut it at the base of the skull and his approach is the exact opposite of theirs. His anesthesiologist shared with me her cancer diagnosis and how she entrusted him with her life to over look her surgery and he stepped in and did it his way, that says it all. I’m always one to have some sort of weird reaction to things, and I warned him day one about my swelling or nerve recovery and he looked and me and said you are very thin, we will have to work very slowly. Sure enough my neck was so small he had issues with his instruments being too large, but he anticipated it and worked through it. When i stressed my concerns he said it was nothing he hadn’t already anticipated. After learning my anatomy on one side he reassured me the next side would be that much easier and it truly was. He mentioned doing six styloidectomys just last week! (( Apparently ENT oncologists are the most experienced because with every tumor removal the styloid needs to be removed first?!?! or so i read :slight_smile:
Keep me updated on your experience. Anything shared can help someone and spreading awareness is crucial to saving someone else!

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Great discussion, @vcp02 & @wade. Your thoughts & information will be helpful to other members.

@vcp02 - Thank you especially for the information about how to get out of network insurance to help cover surgery w/ Dr. Osborne. That will be quite useful for others who are considering surgery with him. I hope your healing moves forward quickly. :hugs:

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Pls give me your whatsapp number or instagram id i’m dealin with this same…will talk on this.

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@madhavshrma , you can have a private chat with @vcp02 on here, just click on her avatar and it will come up with the option to send a message…we don’t suggest putting private contact details on the main forum to protect everyone’s privacy…
It’s fine to ask questions on here if there’s things you want to know, it’s helpful for all members as we’re a peer to peer support group :smiley:

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Would happily answer any questions. I honestly don’t do FB or insta so don’t have anything to share :slight_smile:

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@vcp02 - I just had a consult with Dr. Osborne yesterday and am moving forward with surgery. He is worried about my weight because I’m underweight due to gastroparesis (as a result from ES). He ordered new imaging and asked that I gain at least 5 more pounds.

My question for you is, how long are the sutures left in before they are removed? Did you have him remove them or travel back to TX?

I am also from south Texas.

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@Cara - I’m glad you’ve made a decision about surgery. Weight gain doesn’t necessarily need to come exclusively from eating extra calories. It can also come in the forum of muscle gain. If eating is hard for you right now, & you’re able to do some resistance exercises to increase muscle in your thighs, gluteal muscles, arms &/or abdominals, that will also help w/ weight gain. You can strengthen your thighs by doing stand up/sit downs from a chair that puts your legs in a 90º bend then stand up slowly without using your arms to help & resist the motion as you move to standing then resist as you sit back down (no arms). Do 10-20 of those (or however many you’re able to do), 2-3x per day. You can do toe taps (i.e. like you’d do when anxious or bored - keeping your heels on the floor & just lifting your toes) to strengthen your peroneal muscles which run from your knees to your ankles on the lateral part of your legs. Tap your toes, one foot at a time till your peroneal muscle is tired then switch feet.

For arms you can do wall push-ups if those don’t hurt your neck/shoulders. Keeping your feet closer to the wall makes less resistance for your arms but will still give them exercise. If you can do the push ups, at the same time, try gently bracing/tensing your tummy muscles (like you’d do if someone faked slugging you in the stomach) as that will give you an abdominal workout, too.

Adding some gentle muscle building exercises, as well as extra food calories, to your daily routine may make the weight gain easier.

Please let us know when you have a surgery date.

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I am so happy your surgeries went well! Praying you continue to heal and that all your symptoms disappear completely and that you recover well. :growing_heart: Thank you for sharing this post. I found the statistics you shared in your post that Dr. Osborn has gathered quite interesting & enlightening. (I have scoliosis & wonder if this correlates). I am just two weeks post op Rt styloidectomy (Cleveland Clinic - Dr. Danielle Bottalico) and doing well. I had a consult via zoom with Dr. Osborn in April and his belief in my symptoms and knowledge and compassionate demeanor gave me hope. I was in deep despair at that point. I had multiple CT scans, MRI’s with & w/o contrast etc and had the round of years of specialists and no answers. My dentist found my Eagle Syndrome via a 2D pano. And even after that, doctors in my area of Michigan blew me off, or just didn’t know what to do with me. Our insurance would not cover surgery with Dr. Osborn and we finally found a surgeon at Cleveland Clinic. I still have my left ligament and we are in “wait & see” mode. So far, just nerve sensations up in my left nostril/septum area, but no debilitating varied symptoms like I endured on my right side. Thank you for your post and for sharing your journey. We all need hope and to hear of the successes in this unique and challenging journey. All the very best to you. :sun::yellow_heart:

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We stayed for a total of 10 days. I left just 2 days post op of my left side. I still have stiches on one side, but he instructed my husband on how to easily remove them. Im sorry theres some delay regarding some weight gain, but what I love about Dr. Osborne is that he is exceedingly cautions to ensure great outcomes. :heart:

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Dear Suzy,

Thank you for your message! Dr. Osborne is truly out of this world, when he asked me what I wanted out of the exam I said, “Validity”… I think so much healing came from that alone. I am happy to hear you found a Dr, within Cleveland clinic. The battle of insurance is a whole other obstacle that shouldn’t exist when fighting for your life. My right styloid was causing all of my pain, I was convinced it was my only problem. I had my left removed just 5 days later, and can honestly say I felt the right symptoms “die off” as the left flared in just that short time. Its a slow journey, and for the moment I can tell my heartrate is having a hard time adjusting but you know your body best, should you start to notice changes in your symptoms. Regarding the scoliosis, that is a key player, also another diagnosis someone my spine specialist didn’t classify. It is what lead to my “Snapping scapula syndrome” which is also correlated to Eagles shoulder pain. Thank you for sharing your story, this network only consists of strong survivors and plenty of hero’s including yourself. <3

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@Cara I’m glad that Dr Osborne can help you… Are you able to drink okay with ES? Protein shakes or build up drinks might help you put on some weight, although I guess you’ve probably tried those? :hugs:

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Thinking of you and praying that your recovery goes well…I have put your doctor’s name on our list :hugs: :folded_hands:

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Thank you Jules for your thoughts & prayers. Tomorrow is 3 weeks post op. I saw Dr. Danielle Bottalico for my post op appointment on Wednesday and it went well. The incision is closed and healing well. I have no Eagle Syndrome symptoms at all on my right side where she removed the right ligament. I do have jaw & facial tenderness and some numbness and tingling yet along the jawline on down to the incision and some swelling around the incision. Dr. B said this should resolve. I have nerve pain up inside my left nostril/septum area - as I did on my right side before I had my surgery. It’s not extreme, but it is there. The right side up inside & outside my nose, the nerves were firing constantly and so painful it felt like big bugs were crawling up inside and outside my nose & that would wake me up at night. I did have the nerve sensation in my left nostril before surgery but thought it was sensation that was just coming over from the right side. That’s probably not the case. Dr. B said it may be from my remaining elongated and calcified left ligament. So far, this is the only symptom on the left side. I am hoping and praying nothing else arises. She wants to see me in 6 months, but said to call her if I develop more symptoms in the meantime. Do you know if most bilateral ES patients need to have both ligaments removed? I have read many people don’t and then some have one ligament removed and that causes the other ligament to flare up. I am taking life one day at a time. Week three and I am finding I am just exhausted. Suddenly I don’t have a whole lot of energy for anything, but Michigan has been suffering from lots of heat and humidity and Dr. B said my labs showed I was anemic post surgery, so that could be contributing to the fatigue. I’m praying the worst is behind me. At least I have a surgeon and a support group if the left ligament rears it’s ugly head. I’ve survived thus far and gotten through one surgery, I will “keep on keeping on”. Thank you for your sharing and support. :blush:

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These symptoms are most likely being caused by your trigeminal nerve. I had pain in my nose after my two ES surgeries & looked up the location of the TN & found it has a “tendril” in the nose. I mentioned nose pain to my ENT & said I thought it was from the TN. He laughed & said he was sure it wasn’t but then looked in my nose w/ his scope & told me I was right. Though the numbness I experienced along my jawline has never fully gone away, it’s sure better than having pain there. My nose pain has been gone for some years now so I’m thankful for that. Your incision may be swollen for some weeks yet. Mine took 6-8 weeks to settle down.

I had the same problem post op. It was two months before my energy returned. I think exhaustion is one tool the body uses to keep us down so we can heal more quickly after we’ve had a major surgery. You’ll probably find you have more energy some days than others so you’ll do more on those days then you’ll feel more tired on the following day or few days. This is normal & a reminder to step back into activities by baby steps not by leaps & bounds.

Contrary to what you’ve read, it has been our experience on this forum that there are more people who have bilateral ES who will need the second styloid removed than there are those who won’t. In bilateral cases, the best symptoms reduction is often achieved w/ bilateral styloid resection.

It’s hard to tell prior to surgery which styloid is causing which symptoms. Once one is removed, the symptoms being caused by the remaining styloid become more obvious & often more intense & can even cross over to the side that’s already been cut back. This may be in part because with one styloid gone, there’s a sort of imbalance in the neck which is resolved once the other one is also resected. When I had my surgeries, it was common for surgeries to be 6 months apart but now the normal is more often 3 months apart.

This is really great news! I’ve added Dr. Bottalico to our Doctors List.

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