Personal Progress, such as it is

General
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Hi
just letting the forum know about my (lack of) progress:

I joined the forum a couple of years ago, after several years of pain and a diagnosis in about 2016 or so - it’s been so long I barely remember.

I have bilateral Eagles and live in Auckland, New Zealand: a land of few people, many sheep, great beauty, hobbits and orcs.

While I have been under the ‘care’ of an ENT doctor here in Auckland, there are no surgeons in the country that have done any Eagles surgery. I have been sent backwards and forwards to various clinics around Auckland, had many scans and seen many doctors. Only two of them have ever heard of Eagles before I saw them, and only one had actually seen another case. They all say ‘not me’ and pass me back to my ENT doctor.

So the last time that happened, my ENT guy said that they would not pursue a surgical solution: they would only offer me a drug solution: I currently take Pregabalin which usually reduces the pain level but does not stop it, and sometimes I feel the full brunt of it regardless of the pain relief I take.

And unfortunately that is the good news :frowning:
I have put my search for a solution to the Eagles on hold because I have been recently diagnosed with lung cancer - and in the same week as my wife was diagnosed with breast cancer. The only lucky part of this nightmare is that both of our cancers have been caught early, and our prognoses are good.

After we have got through the treatments and are cancer-free I will resume my search for a permanent fix for the Eagles. I would like to try the surgeons in Melbourne, Australia but the Covid situation there precludes that for the foreseeable future.

If I make any progress I will return and let the forum know: until then to all fellow sufferers - Kia Kaha everyone.
Stay strong and stay safe

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Lofty99 -

WOW! I am so sorry to hear of your family situation but thankful that you & your wife’s cancers have been caught so early! I’m also sorry you’ve been passed around from doctor to doctor as you’ve tried to get help for ES. Generally an ENT cancer specialist who does surgery in the same part of the body where the styloids live would be willing to attempt an ES surgery. Head & Neck surgeons, Maxillofacial surgeons & Neurosurgeons have also been known to do ES surgery. Because your country is small, you may not have access to all these different specialties. I also understand that ES is not your first priority at the moment.

I’m glad you’ve been given a nerve pain med that is at least helping w/ your pain sometimes. I guess being able to “take the edge off” is better than suffering the full brunt of it continually. I hope you’re able to find a surgeon in Melbourne who’s willing to help you when the time is right for you.

I love the humor in your second paragraph. New Zealand is a place my in-laws loved to visit & I hope to see your country one day myself.

I will be praying for you & your wife for peace & healing during this very challenging time.

Sending a hug for encouragement :hugs:

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Oh poor you…at least there’s a glimmer of light that the cancer’s caught early. Do you know what treatment you’ll need- surgery, chemo, radiotherapy, all of them? Best wishes to you both for that, and I hope that the pregabalin keeps on helping you…if not there are other nerve pain medications which can help, might be worth trying otherwise?
Feel free to keep popping back on here to let us know how you’re getting on, not just the ES but the cancer treatment too.
Sending you both hugs & God Bless

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Thanks for your support, and the suggestions for future courses of action. We will indeed be continuing the search for an ES solution in the future, after we win the current fight.

Live long and prosper

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Wishing you the same, Lofty99!

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Gosh, I’m so, so sorry to hear this. Here’s hoping your cancer treatments are both extremely successful and that you can continue to pursue your ES treatments sooner rather than later. Completely understand that that needs to be on the back burner for now, and I’m glad that your pain has been reduced so that it is at least manageable.

While there are many advantages to living in your country (hobbitses and orcs, for one!), not having specialists who know ES is a distinct disadvantage. I hope you can at least enjoy the sheep and beauty in the meantime.

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So, an update for anyone that may be interested:

I have now been referred to a new Head and Neck surgeon (after my GP asked for a second opinion) - this guy is an Australian currently working here in Auckland - and has actually performed the styloid reduction surgeries (though not yet here in Auckland). He is generally easier to talk to than my previous ENT doctor, and is much more familiar with the intricacies of ES treatments.

He has asked for a detailed CT scan of my neck after reviewing a PET scan I had for my cancer treatment: it shows a hot lymph node/gland in my neck on the left side. He wants to rule out cancer (given my lung cancer diagnosis) but admits it may be actually ‘hot’ from irritation caused by the elongated styloid (60mm+ om the left side) rather than showing high sugar burning from cancer.

He has also stated that, after the CT scan and any action arising from it, he will consider doing the surgery on my left side styloid (the longer of the two, and the one that gives me the most pain), to see if that may reduce the symptoms without adding to the neuralgic pain I am already getting.

So, that is the good news.
For anyone interested in our cancer treatments I unfortunately have both good and bad news.

My wife was diagnosed with Paget’s Disease of the Nipple, and had a partial mastectomy to remove a small (6mm or 1/4 inch) tumor, and some lymph nodes. Unfortunately the lymph nodes were positive for cancer so she has to undergo chemo (6x treatments, the last starting on Thursday - our 37th wedding anniversary :frowning:) and radio therapies (15x over 3 weeks, starting about a month from now) and then goes onto hormone therapy (way less invasive) for a couple of years.

I was diagnosed with a small tumor (adenocarcinoma, 25mm or 1 inch, stage 1A3) in the lower lobe of my left lung: the biopsy taken to prove it was cancerous caused my left lung to collapse (pneumothorax) that caused the most unbelievable pain: I thought I was having a heart attack, and so did the doctors for a few minutes!
So: stage 1 cancer in one lobe of my lung, very treatable. I had laparoscopic surgery on 11th September, where they removed the lower lobe of my left lung, and some lymph nodes.

The lymph nodes were negative for cancer - but the biopsy on the lung lobe that was removed showed no cancer, so new scans were done on my chest, and it was found that the surgeon had cut down the blood supply to the lower lobe but then accidentally removed the upper lobe! So, 18th September I had a pneumonectomy: they removed the remainder of my left lung.

Recovering from a second and much more invasive operation has been slow and painful. I am working again but still getting weekly physio and pain management treatments, and have been scanned last week for my respiratory specialist, who is happy with my progress.

So: mixed results, but hopeful still of a full recovery (though I will be cutting down on the number of marathons I run :slight_smile:) for both of us.
And now it looks like there may be a way forward on the ES front as well, so can’t really complain.

Thanks for reading this far, if anyone does so: for all of us the ES is a road well travelled and progress is often slow an invariably painful.

Stay say, one and all

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So good to hear from you Lofty99! WOW! What journeys you & your wife have been on & all at the same time. I remember your last post where you mentioned you were both dealing w/ cancer diagnoses. I’m glad the outcome is expected to be positive for both of you.

What a horrific experience for you that the lung surgeon made such a terrible mistake. It sounds like you took it in stride & have moved on toward your healing goal. Dealing w/ all that & w/ bilateral ES is really tough. I’m so glad you’ve found a likeable & knowledgeable surgeon to help you deal w/ ES. We would love to have his name & contact info at some point (or did you already provide it? Sorry, I can’t remember).

I will continue to pray for complete cancer healing for you & your wife & for you to be able to have surgery to get your longer styloid removed soon. Do remember that some symptoms can be caused by both styloids when they’re elongated so some symptoms that remain may stay put until the second styloid is removed. I certainly experienced that scenario in my case.

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What a difficult journey for you & your wife! You sound so positive, I’m sure that’s helped you manage a scary experience…very glad to hear that the prognosis seems good for you both now.
Glad that you have someone in mind to tackle the styloids when you’re up to this!
God bless & will pray for you & your wife :pray:

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Lofty,
You are an inspiration to all of us. You have climbed a mountain and still survived. As an FYI: when I had es surgery last year, that had to remove a lymph node in my neck. I think it is common to do this during ES surgery as they have to cut thru them to remove styloids. I noticed in the operative report that it was noted as high reactive…alot of activity. Biopsy showed benign. I would agree with your new ES doc that its likely “hot” from the irritation. It sounds like you finally found a doctor that can help you successfully walk the ES path. Wishing you and your wife the best and that you soon will be able to put all this behind you. :smiling_face_with_three_hearts:

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Lofty here again, with some more news on my personal Eagle journey:
As noted earlier I had a lung removed due to medical misadventure and after more than a year looking for drug/treatment options that would let me work effectively - i.e. with no/minimal pain and also with a clear head, as I write software) I have given up for now and have ‘retired’ at least temporarily, with benefit support due to the accidental nature of my neuropathic pain.

But the good news: I am at home after having my left styloid cut down by Dr Kevin Smith, who operates (literally) out of a hospital here in Auckland: he is an Otolaryngology Head & Neck Surgery specialist, primarily treating neck cancers. For some patients it is necessary to remove or reduce the styloid process to get at tumours, so he has done several styloidectomies - if that is the word. He has also in fact performed some specifically to treat Eagles Syndrome - but chooses his cases carefully as not all pain in the neck area is down to Eagles.
In any event he has done mine, and I am recovering at home. There are no immediate side effects (like issues swallowing or speech problems due to accidental damage to the tongue etc) so I am hopeful for a full recovery and positive outcome.
If it is successful, and I get relief from the symptoms then he will do the right side styloid as well, which is also elongated.

So, a win for me and we can add Dr Smith to the register of surgeons who have dealt with Eadles!

Lofty

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So sorry that you’ve had to retire from your work, I hope that it is just temporary! That’s really good news about your surgery- I hope that you heal well & that your ES symptoms improve quickly…Very good that we have a doctor in NZ for our list!
God bless x

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Hi Lofty!

Good to hear from you after such a long time! Great news about your ES surgery. Not so good about the lung removal & inability to continue working. :cry: I, too, hope you get really good results from the styloidectomy (yes it’s a word! :blush:). I do want to say that sometimes, symptoms take up to a year to go away & sometimes, symptoms from the remaining styloid cause “crossover symptoms” to the side where the styloid has already been removed, creating the deception that the surgery really didn’t help much. I had that happen. For some people to get full symptoms relief, both styloids need to be removed even if pain persists on the first surgical side. I hope you & your surgeon will consider this scenario when the time comes to decide about a second surgery or not. Hopefully, the surgery you’re recovering from will provide optimal results so a second round is unnecessary.

Take it easy for awhile so you can heal well!
:pray: :hugs:

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Hi @Lofty99, I am a new member here and came to your post via @Jules who thought your experience with finding a specialist might help me. I am also based in Auckland and have had ongoing symptoms and pain for 10+ years (though the more I read about it on here, the more I realise I’ve had it for as long as I can remember).
I have struggled first with understanding what had been going on for me, and then secondly, from a confirmed diagnosis of Eagles Syndrome - being told I didn’t have it because I didn’t have pain when my left tonsil is palpated despite the myriad of other symptoms I explained and also an confirmed elongated styloid process on the left side.

It’s been 2 years since my ct scan ES confirmation and the pain and symptoms have increased in both number and intensity on that time. On top of that, my heart rate is continuous in a racing state which wakes me at night and can feel very scary. I most recently visited the hospital this week with a heart rate of 150bpm only to be discharged because my ecg and blood pressure were ok.

I’m feeling very stuck. I know some specialists have heard of eagles syndrome (only when I explain that I think it could be the cause of my symptoms) but none of them really know enough for action to be taken,and for me to trust them to take charge of my health journey.

I understand you managed to get some resolution via surgery with doctor Smith. How did you get on? Did you have any adverse symptoms following the styloidectomy? And are you happy with the outcome? I really hope you and your wife are doing well. It sounds like you had a very rough few years through COVID. Wishing you all the best.

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Hi BraveKat
yes, my story mirrors yours, except I have both sides elongated (although left side was done by Dr Smith)
I moved out of Auckland 2 years ago, all my hospital appointments moved with me, and I no longer have access to Dr Smith, and nobody up here has done styloidectomy

So: Dr Smith is (or was 2 years ago) based in North Shore Hospital ENT/oncology - he has experience with styloidectomy because some neck cancers grow under them, and he has to cut thm to get access
You should be able to find him in one or other of those two departments on their website, or in the doctor registry (even though Smith will get multiple hits, ENT and/or oncology at NS Hospital should cut it down
However, I have to warn you that he did the tonsil touch on me too - both sides - and I actually recoiled with the pain. Ha told me that the success rate of operations relieving the symptoms is at least in part determined by picking patients that have a high chance of success, so he may not offer you the surgery

Worth a try though

Hope that helps

I am still trying to convince someone up here to do it, or to get back on his list (I could “move back” to my sister’s place in Milford temporarily, to get back in his zone

However, I am still struggling with a new cancer in my right (and only) lung, which they would not surgically remove because no one is brave enough to do an operation on someone without another lung to breath with while they do it - so punished again for a surgeon’s mistake in 2020

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Thank you for coming back to pass along your information, @Lofty99. I’m so sorry about the situation with your lung. Is there any treatment you can undergo to slow or stop the cancer progression?

I hope you can find someone local to you now who will do your second styloidectomy. There must be people who get neck cancers there, too, so some surgeon or other will have had to deal w/ styloid removal. You just have to find out who it is.

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A damaged or constricted vagus nerve might be part of the heart racing issue. I have seen that brought up in research.

There is a new device that attaches to skin instead of using a holter monitor that might provide clues. It is worth asking for that test if your insurance covers it. It was billed at about$1000 us dollars. Holters are less expensive.

I wore a holter moniter decades ago that led me to the vagus nerve tilt table test. They immediately put me in the hospital when they reviewed the holter monitor but they couldnt figure it out until they did the tilt table test.

However, the latest go around of testing didnt pick up an issue despite me having weird attacks that made me think i might be having a heart attack. The monitor did point out a few things that got shrugged off. I wore it for 14 days. You are suppose to press a button when you are symptomatic and write in a log but i had it so often it just wasnt viable to do it.

The other thing that can tie into this are gastro issues. I was told my silent reflux might be causing the heart problem which can tie into vagus nerve which can tie into Eagle Syndrome.

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Dear @Lofty99, thank you so much for your reply. I am so sorry to hear that you have had so much trouble with your cancer journey this far. I was thinking, could you make a claim via ACC for the injury/outcome of the last surgeries. Maybe you have done this once already? It may be a lengthy process but you deserve to be heard and acknowledged, and to have access to the most effective treatment available for you and your current diagnosis. Perhaps compensation could look to cover costs for a consultant abroad. Maybe you have already looked into this.

As for your eagles syndrome, does the NZ health system not allow consults/surgeries outside of districts if there is no qualified professional within the district? Out of interest, which district are you in? I have been doing a lot of research of late and have a few names in different district health boards.

I reached out to Dr Smith today as well as a craniofacial doctor/plastic surgeon in Wellington who I had made contact with last month. I have not yet heard from Dr Smiths office but Dr Davis in Wellington is taking my symptoms very seriously and willing to see me this week on an urgent consult basis after explaining my symptoms and providing stills of the scans that I worked out are showing vascular compression (thank you @Isaiah_40_31 and @Jules for all of your help understanding my symptoms). I will fly down later this week and can let you know how I get on if you like. Over email he has said that he has done two ES surgeries in the past and mostly deals with complex cases of birth defects as well as cancers and cosmetic work too.

He seems very motivated, understanding and energetic which in the past has been a good sign for me when selecting a surgeon who will take issues seriously - I had a similar experience to this with my endometriosis diagnosis and finally surgery completed last year.

Keen to hear back from you. All the best.

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Thanks @JugularEagle for letting me know about your experience with a holter and the new monitor that can be used.
I too wore one about 6 years ago - while pregnant, as I mentioned to my obstetrician early in my pregnancy that I had been having pain in my chest, shoulder, neck and a racing heart for at least 4 years prior. Strangely I had the best 9 months of my life while pregnant and had no symptoms whatsoever, possibly because of the hormones that loosen and relax the ligaments, joints and muscles. All I know is that when the hormones finally departed, I was an absolute mess.
What did your tilt test uncover?
I’ve managed to read into my ct scans a bit today and can see my left styloid is curved and definitely restricting the left IJV which is very dilated above and below the compression. I sent this off to a surgeon i was able to get in contact with a few months ago when i thought I had Ernest syndrome. He got back to me very quickly and is willing to see me in a couple of days - though it is a plane ride away. I’m wondering if my current head pressure will be able to deal with the 1 hour ride….

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The tilt table test was so long ago i dont remember details other than i flat lined for several seconds …maybe 8 or 10 but heart began beating again when flat. It didnt take long for it to happen. I got hot ,sick to my stomach, and out I went.

I did the test recently but the room was so cold i was shaking. My certain set of symptoms could have been effected by the temp. They also didnt do the provocation part of test

I have been scheduled for another but am holding off. No way for me to know if i had long styloids back then because i cant access dental records that are that old.

Cardiologist said tilt table is hit or miss. Meaning you can pass the test but still might have a problem.

With your head pressure be sure to ask about testing such as a transcranial doppler that can be done to show what is happening when you turn head or the ultra sound protocol by Hepworth done with head movement

By the way, Look up acessory nerve to see if any research out there about it causing heart racing. Some of your other symptoms could be that nerve like the shoulder issue. Dr hauser has up stuff on his website related to heart racing and cervical spine. Another thing i saw was Wolff parkinson white syndrome for heart racing. I dont know how its diagnosed. It would seem your Ekg should have picked it up if it was that but maybe you have to wear a portable for a period of time.

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