Wow! Thank you for your amazing update & thoughtful advice…
I hope that you can start to get your life back now, & that being able to do things again will help you over the ‘empty nest’… getting towards that stage now myself, sad, scary, but sometimes exciting!
Wow! Thank you for your amazing update & thoughtful advice…
Oh and I almost forgot. I showed Dr. Samji my hand, and the picture of it all blue and scaly before the surgery. He said he can’t take a single positive outcome like that and apply it to everyone’s healing process, but if he sees maybe five people where this happens it’s a little more convincing. So I said, “Well, here’s one”. I agree it takes lots of anecdotal evidence to equal a clinically significant finding, I just want to be sure one of the top doctors for this sees an actual concrete sign of improvement to add to the subjective “I feel great”
Wow, you deserve a break.
I thank you, too, for the detail in which you write. You speak a lot of truth which gives great guidance to those who will follow in your (our) footsteps w/ surgery for ES.
I continue to be so very thankful for the amazing post op results you’re seeing!
Thanks so much julianeagle for the update and words of wisdom. I hope you continue to see improvement and that you continue to post updates even if it’s just a little thing!
Week 8. Interesting appointment with my functional neurologist Tuesday. He introduced us to Harleen, a fourth year medical student, and said “Answer all her questions but don’t tell her your diagnosis. I’ll be back later” (I noticed he was wearing the socks with eagles all over them I bought him as a thank you) Harleen asked questions about my whole medical history, what tests had been done, what had been tried. She noticed my surgical scar. When the doctor came back in 25 minutes later she told him everything she’d found out but had no idea of the diagnosis. He asked her many leading questions, including anatomy of the retropharyngeal space and what nerves and vessels are there, and what are all the things that might compress them? She then got to see my imaging of my elongated/deviated styloid. “You’ve just seen your first Eagle’s Syndrome patient. She won’t be your last”. It was amazing to re-live the medical steps that led to a diagnosis, and more amazing to see my doctor pass along knowledge to a new MD. He gave us full credit for finding the diagnosis ourselves, maybe an even more important thing to pass on.
Most amazing of all–he said when he wrote a very diplomatic message to the pain specialist about how we were right about the ‘exotic diagnosis we were obsessed with’, he wasn’t really expecting any response from the doctor. However, the pain specialist not only wanted to hear all about the diagnosis, surgery, and recovery, he also wanted to be filled in on my continuing progress! What a gift to able to change my negative opinion of somebody!
I drove my Mini Cooper again! I had to take the car cover off, which had lots of leaves and dirt on it. I hadn’t been in a safe condition to drive for a year and a half (and I probably should have stopped before that even) but I could safely turn my neck, and as long as I keep my chin up my vision stays pretty good. I’ve re discovered that feeling of freedom you get when you first get your driver’s license! However…
Friday was bad. Late in the day I got my old familiar neck pain. Vision was bad as was the stomach swelling. How am I going to tell my husband and my doctor it’s come back? Why did I get this taste of normalcy only to have it taken away again? So my husband asked what I’d done during the day. I had organized the medicine cabinet (lots of things I don’t need anymore) worked in the garden, baked, cooked, moved and flexed my neck a lot, didn’t take any breaks. “How was your thinking though all this?” Well, my thinking remained clear and consistent, now that you mention it. “So you got way, way more done today than you have in the past 8 years, you overdid things, yet you were still able to get enough blood to your brain?” Hey, I guess so! I realized I just did too much too soon. I treated myself to a motrin and an epsom salt bath, and by the next day things were back to post-op normal.
Still have blurred vision in conjunction with stomach swelling. Husband’s theory–the inferior ganglion and auricular branch of the vagus nerve, and the glossopharyngeal nerve, were crushed together a long time by the styloid. The nerve sheaths haven’t healed yet and usually take around 9 months, so if I bend my neck too long they send ratty signals across to each other. It doesn’t take long “keeping my chin up” (literally, not figuratively though that doesn’t hurt either) before it clears.
Went thrift shopping with my daughter and her friend. The last time I was here, before the surgery, I was having a particularly bad day, in public, unable to speak clearly or balance. It was just one of many times I’d just pray God would take me now; this isn’t living and I’m just a burden on everybody…But now here I am having a great day shopping and not even afraid to eat or trigger episodes! Our neighbors used to ask me to watch their baby and I just couldn’t trust myself to be able to take care of a little one when I couldn’t really take care of myself. Here I am 8 weeks post op, (A really short time when I consider 8 years of suffering), and I’ve been babysitting the most active one year old ever. I can fully enjoy watching her when I don’t have to worry about myself anymore
julianeagle ~ You write the absolutely most encouraging posts! Thank you for the time you take to provide good details.
How fantastic that your pain specialist was humble enough to seek out the information he lacked by continuing to be interested in your case. I hope he gains much from the details he receives about your diagnosis, surgery & recovery.
It’s great to hear you’ve regained your freedom nearly completely (except for not being able to “overdo” but soon there will be no “overdoing” as you will be completely well. ). I love that your husband knows enough to suggest plausible reasons for the return of symptoms. That must be very encouraging. Here’s hoping those nerve sheaths recovery more quickly than 9 months but 9 months isn’t so very long in the “big picture”.
I continue to pray for your complete recovery.
Yes, thanks for your posts- so helpful to others on the journey & considering surgery! Like you said 8 weeks when you’ve had 8 years of symptoms is nothing in terms of healing, so not surprising that you’ve had some ill effects from overdoing it- I think we’ve all done that, too impatient to wait & wanting to make up for lost time! So glad that you’re feeling so much better, & so amazing that your doctor is sharing your story (& giving you the credit!). Great that the pain specialist is keeping up to date too- hopefully your story might be in their mind in the future!
Take it easy & keep healing well!
The pain specialist’s only experience with Eagle’s Syndrome was a patient with a failed surgery. From what little he said, that person pursued the Eagle’s diagnosis, got surgery, ended up worse off and in the hands of the pain specialist. It might be that patient clung to a wrong diagnosis and remained very insistent so the medical community gave in; that’s why it’s so important to always remain pragmatic and keep emotions and diagnoses separate. It may be the patient really had Eagle’s Syndrome and went to a surgeon who didn’t resect the entire styloid. I believe it’s quite unlikely the patient had Eagle’s, the surgeon had excellent surgical technique, and the patient was permanently worse afterward—all I know is just hearing another patient suspecting the same diagnosis was enough to really set him off, and now I have to give him the benefit of the doubt he was drawing on his experience to help with a difficult decision.
Thank God we discarded his opinion, it sure didn’t make the decision easier. When it comes right down to it though decisions regarding our health ultimately belong to us. Arm yourself well.
Week 9 + a few days
If anyone out there is leaning towards the intra-oral route because you’re scared of a big neck scar, maybe this can help with your decision. There’s a little lump at the top that could be mistaken for a pimple. Other than that I’m thrilled with the result, cosmetically. Dr. Samji is really good and I’ve been consistent with applying Mederma
So, first the bad. I opened the fridge and was attacked by a jar of minced garlic that leapt out of the door. It hit me halfway down my jawline, same side as my surgery. The right side of my cheek and mouth immediately sagged and went numb like I’d had a stroke. Very scary but it only lasted a few minutes then went back to normal.
When things were bad, I had a list of things I’d do if I somehow wasn’t so sick anymore. One of those things was jumping on the trampoline. Any jarring affected me so, and balance was a problem so it was unthinkable. Last week we were all outside surrounded by glorious summer thunderstorms and my son was on the trampoline–I joined him and jumped and jumped! I know it sounds silly and no big deal but to me it was a milestone.
Getting passed around from doctor to doctor with no diagnosis was really hard. Telling my crazy story over and over again, having so many doctors tell me there’s no connection between my arm turning blue, my right lower quadrant swelling, my left nostril flowing, blurred vision, tinnitus, slurred speech—even though it always came on simultaneously. A great neurologist took me seriously, and HE sent me to the functional neurologist.
The functional neurologist is an osteopath. I was skeptical, thinking he’d be a glorified chiropractor (Hope I’m not offending any chiropractors out there but I had horrible experiences when I went) This guy really understood the structure and function of the body. He could manipulate me in ways that would make me feel great–very temporarily. After a few visits he said “There’s something in your body fighting me. It needs to be addressed otherwise these treatments won’t stick”. When we found the elongated styloid we contacted him immediately. He researched Eagle’s with us and thought we were on to something. He was the only doctor that came right out and said he thought the surgery would make me better. He did say with the Ehlers-Danlos and pectus excavatum I’d need to come back some after the surgery but there would be lasting progress after our visits. (Also he uses my case to educate medical students. What if someone had done the same for one of my doctors I saw over the past 8 years and they were able to diagnose Eagle’s?)
Yesterday I saw him. He did his manipulations and loosened things up. I left feeling 100%. Pre-op any improvement would last until I got to the car–yesterday, even with all my prior ‘triggers’, it lasted through our anniversary dinner. Even when I got home I only had some slight blurred vision. There’s a noticeable difference if I push too hard and do too much but I have a lot of hope for continued improvement. In addition to no more transient ischemic attacks, and my hand completely healing, I no longer have the rhinitis either!
I think finding a really good doctor to help through post-op recovery is a very important and overlooked step in all this.
Thanks for your updates- it’s great that you’re still seeing improvements, & lovely to be able to get on the trampoline again!
Love, Love, Love your picture! Your scar looks like a neck crease. The bump at the top will go away. I had one for awhile, too. So great to hear your story & the giant strides you’re making in recovery!!
You look amazing you can barely tell! This makes me feel so much better I’m going for my left side external approach in three weeks and I wasn’t really worried about the scar because any relief right now would outweigh any scar! Thank you so much for sharing!
Thank you for your updates. And good luck on your continued healing. I’m in the car on the way to my surgery with Dr Samji. A little nervous, a little excited and looking forward to relief from this monster. I’ll try to post updates though I doubt they’ll be as eloquent as yours.
11 weeks update… (As time goes on change is less dramatic, so updates can be spaced out more)
Well, I continue to rejoice in the fact I can think, and balance, my nose doesn’t flow like it used to, my arm doesn’t turn blue, and my hand is healed. I’m frustrated by the stomach pain and blurred vision but encouraged that after being treated by the functional neurologist even that is gone for awhile.
This is the part where if you have stomach issues you’ll read close; if you don’t just skip all this. I’m going to share my theory about what is going on; future updates will tell.
After the car accident I started getting right lower quadrant pains with blurred vision at the same time. When the pain (really, a ‘pushing’) would clear, so would the vision. Consistently. I can press on the right lower quadrant and my vision clears. I’ve had more than one doctor tell me there’s no connection but there clearly is. I had my appendix out, didn’t help–but, for two days post op, no pushing or vision changes. Same after my surgery with Dr. Samji. Two more clues—I’m much better when constipated, and my blurred vision is distance–way up close actually gets sharper.
The other structure in the right lower quadrant is the ileocecal valve. It acts like a gatekeeper between the small and large intestine. If it’s stuck open, putrefied waste from the large intestine can push back into the small intestine where stuff gets absorbed. If it’s stuck closed, you get constipated and your stomach swells.
Here’s how it works—if you have more pressure on the small intestine side, the nerves send a signal up the vagus nerve, and a parasympathetically controlled action comes back down, telling the valve to open. When the pressures are equal it closes again.
There’s a very similar parasympathetically controlled action in your body with a totally different purpose. When you see someone’s face across the room, your eyes are distance focused. When you bring something close to your face to read, your eyeball has to change shape to accommodate the near focus. That accommodation reflex is another function handled by a branch of the vagus nerve. There are a number of conditions that can cause ‘spasm of accommodation’ and get you stuck in near focused vision.
My theory? My vagus got smashed against my elongated styloid in the car crash. When the signal is sent up the vagus to open the ileocecal valve the signal goes back, not to do that, but to accommodate near vision focus. If I press on the right lower quadrant I increase pressure on my cecum, equalizing pressure and stopping the signal for the valve to open. Constipation does the same thing, things get backed up so there’s equal pressure. During general anesthesia they give anticholinergics like atropine to keep things dried out. Studies on cats show atropine locks the ileocecal valve open.
I don’t want to blindside the neurologist with this tomorrow at our meeting so I sent him this through the patient portal. Giving him a chance to think about it a bit to see if it’s plausible will make our appointment more productive.
What to do about it? Three options I see 1) Wait. I’m just 11 weeks post op. The vagus nerve can take up to a year to heal. It’s possible it needs some sort of a reset after making the wrong response for the right stimulus for so long. 2) Learn some techniques for freeing a stuck ileocecal valve. The fringe medicine folks occupy most of the internet info on this valve—they blame everything from acne to zinc deficiency on problems with this valve, but they do offer massages to ‘free’ it. 3) Explore medications that might balance it better. Magnesium is supposed to help, I might switch from magnesium oxide to ‘Calm’, a magnesium citrate mix, as a trial run. I already mentioned anticholinergics but I really don’t want to take those long term. Might be worth experimenting with an atropine eye drop to see if I’m right about the spasm of accommodation, but that would just be diagnostic. (years ago I tried the same thing with an anticholinergic nasal spray to prove my unilateral nose flow was a parasympathetic malfunction and not a CSF leak. Totally stopped it)
I will let you know what the neurologist thinks. I will say, spending years trying to decide if this is a head problem or an abdominal problem, getting the styloidectomy done removed most of my medical issues and half of the regional ones. Taking pressure off the retropharyngeal space frees me up to concentrate on the final step of taking pressure off my right lower quadrant.
Wow, you’ve certainly researched all this, didn’t realise the vagus nerve had all those functions, I knew it had parasympathetic functions but… It will be interesting to see what the neurologist thinks! The only thing I’d note is that magnesium citrate can have a laxative effect, & you’ve noticed constipation improves things, so be prepared for that!
I’m glad that you’re still seeing improvements & that the surgery has helped. I hope you can get some answers to the rest of the symptoms… Let us know how you get on!
I love a good mystery! Excellent sleuthing “Sherlock”. It all makes sense to me! I love it when little details point to facts that help clarify a given situation. Sure hope your neurologist appreciates the work you’ve done to help identify the cause(s) of your somewhat bizarre health challenge. Our bodies are so very complex. God alone knows all the intricacies. Man will never be able to unravel them all.
We are a determined lot!
Thank you for your updates and information!! Did you havr both sides eagles done? Or just one side removed?