Ok. Thanks for the reply
Congrats on your surgery Dontgiveup!!! Dont over do it. ITs 2 steps forward, one step back after surgery.
Doglover…Im still upset for you over last minute cancellation of surgery. In an interesting turn of events, I have just been diagnosed to TOS on my other side. I had some EMG testing ordered by my hand surgeon that supports the diagnosis. This was not expected as I thought it was issues with nerves in my elbow causing hand grip problems. The doc who did the EMG testing is a physiatrist. He was not familiar with Eagles. I am still digesting his explanation of why we can develop calcifications in the neck. A common discussion around here. He explained that when ligaments are stretched or tight, they can become inflamed and develop calcifications. There does seem to be some agreement that what ever causes calcifications, it is an inflammatory process. It can also be a metabolic process but that is more rare.
The scalene ligaments in neck connect down into thoracic outlet triangle /bracial plexus. Interestingly the past couple weeks these ligaments in my neck have been spasming out. The physiatrist isn’t a big surgery supporter and suggests botox in the scalenes to calm down the TOS. I have ehlers danlos and my previous TOS / Bracial Plexus surgery was nerve decompression. I have a long history of scar tissue laying down causing nerve compression so I kinda know where I am going to end up on this.
I am starting to suspect if a lot of my ear/neck problems are related to this when I thought originally it was Eagles. The ES surgery did help some but not completely. I do know my ES surgeon made a comment that when he cut my neck open, it was very tight.
I am in Seattle and when I asked my hand surgeon for referral for potential TOS surgery, he is sending me back to UCLA where I had my first TOS surgery in 1999. A neurosurgeon (Filler) did my first TOS surgery. This new doc is a vascular surgeon who has expertise in TOS and bracial plexus issues. I have a consult the end of May. This has been a very strange turn and unexpected. Had I not gotten the EMG testing, I would never thought to go here. Life is a journey. Sometimes things do happen for a reason.
From the very beginning, I focused on the ES surgery being done first and working on other issues in parallel. Luckily I didn’t get surgery cancelled. By having the ES surgery, it helped me exclude some but not all of my symptoms. Although I understand Dr. Axon said he needed to exclude other symptoms first, the reverse could be said on your side. You know ES surgery wont make it all magically go away as you need to address the brachiocephalic compression. I agree with you taking the 40% off the table would give you some relief. Im not sure why Axon can’t see that and just move forward with ES surgery. Axon is worried the surgery wont help you and you’ll come back on him and complain. It’s all about liability.
I don’t know if you have decided to appeal Dr. Axon decision. On the good side, you know the criteria and the possible hoops to jump thru. I encourage you to push for an appeal if you feel that is the right thing to do. You know your body better than anybody.
Im not so sure I agree with his view there is no treatment for brachiocephalic compression. It appears that issue is out of his wheelhouse of expertise and it’s making him or the powers that be above him nervous. I don’t know if this helps. I hope you are recovering from the sick of this sudden cancellation.
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Unfortunately, with the UK’s NHS system, there are protocols to go through & surgeries aren’t offered down to the doctor’s discretion any more, a team makes the decision based on whether certain criteria are met- Mr Axon’s hands are tied with this. There’s such a huge demand on the NHS now & back log with the pandemic that it’s made things even worse 
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So sad it leaves so many in desperation and in pain. I suppose if you know how to answer the questions the right way, you might be able to get past the team making the decisions. It sounds similar to how HMO’s are run in the US. Getting thru the gatekeepers rules and criteria.
COVID has done huge damage to the medical systems everywhere. This combined now with shortages of staff. Medical professionals in US are retiring or planning to retire a lot sooner because of what COVID brought to the medical system. Im afraid we are in for a rough ride in the coming years.
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Hi @Dontgiveup,
How are things? How is your recovery going on?..
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Hi everyone,
Thought I’d come back briefly and give an update. For the past few weeks I’ve been doing much better. I had family from Minnesota fly over to the U.K. and stay with me. I was able to do the things I haven’t been able to do in so long. Before, I’d pretty much collapse after walking across the room due to my heart rate going crazy and feeling breathless.
I was able to walk around London and other places we visited. I needed to rest at certain times. But from doing nothing to be able to walk around most of the day was incredible.
My heart stays around 80bpm instead of 100bpm. And when I used to stand up or eat my heart would go from 100-140bpm.
That doesn’t happen anymore. I have been feeling a lot better in myself and have been able to be more social.
However, from last Friday, I’ve been feeling increasingly worse. My head pressure is back in full force. Body aches, fatigue, chills, my ears are humming and ringing. And my anxiety is coming back. But it feels physical. Not mental. I know I wouldn’t be anxious if I was feeling well.
So I am feeling extremely anxious and confused. I don’t know if this is some sort of healing thing or not. Or maybe I overdid it.
I went to the hospital and they checked me over and said everything was fine. I wasn’t sure if I picked up an infection. Especially from being housebound for over a year to suddenly going out and about everywhere. But everything checks out fine, even though I don’t feel fine.
Not sure why I’m feeling so bad again. I hope this doesn’t last too long. But I don’t know anymore. I Know I’ll probably need the other side doing since that’s compressed too. I just feel deflated.
I don’t want to bring any pessimism here. But this is my reality right now. Has anyone else gone through this type of thing during recovery?
I hope everyone is doing ok.
So pleased that you had been feeling better & had a good time with your family…It does sound more likely that you’ve picked up a virus having the chills & aches- I still find now if ever I have any bug or virus that I do get some symptoms back, neck pains, ear pains etc so it could be that? Otherwise as you say it could be that you did overdo things, we’ve all done that & set healing back a bit…If your other side needs doing, the extra exercise you did after doing very little could’ve increased the head pressure- I found in between the 2 surgeries heat, exercise & stress would set symptoms off a bit, nothing like as bad as before, but then my 2nd side wasn’t as badly compressed. I hope that this reassures you & of course hope that this is a bit of a set back & you start feeling better again soon- not good to get your life back & then to feel rough again, sending you a hug & thinking of you 
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Hi Dontgiveup,
I found my ES recovery to be a 3 steps forward 2 steps back process. I’d have a week where I felt pretty good then a few days to a week where I had pain & symptoms returned. This went on for several months after surgery. The upside is that the trend is gain toward recovery even if it’s slow.
As Jules noted, when we feel good, it’s easier to overdo, but there may be consequences in the form of recovery regression when we do that. I think Jules explanation of how the second styloid may be involved in your set back is excellent.
I expect you’ll feel better again but it may take time. You had a big surgery which is a bit slow to recover from. Please try not to worry. Trust that your body is taking the time & making the effort it needs to recover well. 
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@Dontgiveup If I am not mistaken, it is about 3 months since you went through the surgery. I know this surgery tends to be deep since they shaved off your C1 along with Styloid removal and might take long time to fully recover. I am wondering if you can update us. If you have seen some of the symptoms resolve/alleviated? what is remaining? …etc
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@Dontgiveup , how have you been? Are you ok?..
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Hi everyone,
Sorry for being away for so long. It’s been around 5 months since I had the styloidectomy and C1 shave. You weren’t kidding when you were saying that it’s an up and down process.
Overall, the surgery was life saving in the fact that it’s brought me so far forwards from the absolute state I was in. It was the right thing to do and I am so glad I went through with it. Recovering from surgery really wasn’t too bad - not compared to the tonsillectomy I had some years ago. The tough part about it was just the fluctuation in symptoms afterwards and not knowing if I was going to completely be ok or not. It is a wild ride. I have gained a substantial amount of health back, though I am not completely better. I still don’t have full quality of life. Though, I have only had one side done.
My symptoms that persist are base of skull pain, head pressure, ear pain and tinnitus. I am able to walk around no problem, but i can’t do anything that gets my heart pumping too much or the head pressure increases and I get breathless. Beforehand however, I couldn’t even stand up or eat without feeling like collapsing and dying. So It’s a massive improvement.
I still get temperature fluctuations and chills. Sometimes I feel pretty ill but i know that i’m not ill with a virus or anything. It’s a different feeling. Car rides and being too active still upset my body, so I try to be gentle. And let me tell you, I am not a sit down person, so this is hard.
My right side is also very compressed. Which also means the vagus nerve and any other nerves being squished are also affected. I have had appointments with Dr Axon since, and he was very pleased that I was in a much better place post surgery.
I did have a honeymoon period post surgery where I felt like i really had it good for at least a month. My theory is that the inflammation in the area helped stabilise my cervical instability.
As time goes on, I realise more and more how the other side is affecting me. I can feel the epicentre of pain and pressure coming from the right side of my skull - the side of my remaining styloid. Though of course the pressure radiates everywhere. Not sure if the left side becomes painful due to compensating now for the right.
But Dr Axon has agreed to take the right styloid out. He will also attempt shaving down my C1 since that is playing a part in squishing my jugular vein. However, due to my anatomy, getting to the transverse process on the right side of C1 may not be possible. And in that case, he hopes that taking the styloid out will provide enough relief. So I can only hope that it will be enough.
The head pressure and ear pain are the worst symptoms left. I also have cervical instability and i’m not sure how much that plays into everything. Of course, once this last surgery is complete, I only have PRP left to try in the hopes of ending this suffering.
I really hope that having the other styloid out will really transform everything for the better. I want this to be the last piece of the puzzle. The first surgery was a huge help, so if i’m 50% better now (possibly), then I hope the other side is the last 50%
I just hope the compression on my jugular vein and any other nerves can be released. And if Axon can’t get to C1, I hope removing the styloid will be enough. The right side sounds like a bit more of a risky surgery.
Just know, even if i am gone for a while, I will come back to let you know how everything works out. You have all helped me so much and I wouldn’t be here without you. I hope this helps!
Oh and I never got first bite syndrome… I was totally expecting that, but it never came!
Please let me know how you are all getting on 
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So pleased that you have seen some improvements since the surgery, that Mr Axon is happy with your progress & that you have a plan to remove the other side…I hope that wait’s not too long & of course will pray that your symptoms improve again with the 2nd surgery, God bless 
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@Dontgiveup I hope your recovery and further treatment has been going well!
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Hi doglover- I have been recently following your older posts and wondering how you are doing? The severity of your symptoms and type of symptoms match mine almost identical. I would love to know how you were doing if you don’t mind sending a line. I hope you are doing well. God bless you.
@Psalm73_26 - @DogLover hasn’t posted in a couple of years. I do know that she had surgery & is doing much better now. BTW - I LOVE your screen name! 
Thank you… It is one of my favorites too. I was inspired by your screen name to have scripture as my screen name 
.
I am so happy to hear that doglover is doing much better. I also was wondering about nevergiveup … Hopefully they had their second surgery and has also been doing well.
I have some tough neuro symptoms then involve my legs/ feet numbness with difficulty walking and balance issues. I have all the classic symptoms of pulsating tinnitus and head pressure, as well as neck pain, throat pain, etc. I am seeking out some of the tougher cases here to see how they are doing, because relate best to their symptoms.
Thank you so much for holding this forum!
I’m happy I was inspirational! 
This was the first (& only) forum I ever joined, & I was at a loss for a screen name so I prayed, & God put Isaiah_40_31 in my mind. It was perfect since it also mentions eagles. 
I’m sorry I can’t recall how @nevergiveup’s story ended, but I think it also had a happy ending. There are many, many pretty severe IJV compression stories on our forum. If you click on the magnifying glass image in the upper right of this page & type in IJV compression or jugular compression or internal jugular vein compression, you’ll get a list of posts where it’s mentioned. Dr. Hepworth (CO) & Dr. Costantino (NY) are the two doctors on our Doctors List who routinely do IJV decompression surgeries. Dr. Costantino is a bit easier to get an appt with & he does virtual initial consults for out of town patients, whereas Dr. Hepworth requires in-person initial visits. They do have different surgical strategies so there is also that to consider. Dr. Hepworth Rxes a blood thinner such as Plavix or Brillinta for his patients who have vascular outflow obstruction. This has helped to reduce symptoms for many of them. Perhaps your PCP would be willing to prescribe something like that for you while you investigate what your next step should be.
IJV compression can definitely be quite debilitating so you’re in good company here as far as gaining a lot of information about it & what to expect from surgery.
Oh wow! I did not realize until you mentioned that of course, your verse references 
…That is wild!
Thank you so much for this additional information. I am going to look into a blood thinner. I am wondering about surgical approaches as they differ between these doctors. I did notice that some patients here have scars behind her ear, some below their ear to the side of the neck, and some even at the front of the neck. I am very particular about this because I have had ACDF surgery twice already and that I believe put me in this boat. I definitely do not want to do any surgery where they caught me in the front of my neck and I have to have my head tilted back. I am hoping that the other surgical approaches by the ear and side of neck requires the patient to be laying on their side. That is definitely my preference!
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You’re very observant regarding incision sites, @Psalm73_26. It seems most doctors make their incisions in neck creases on the sides of the neck, however, there are a few that cut behind or in front of the ear. The only time I’ve seen an incision at the front of the neck is when the greater horns of the hyoid bone needed to be shortened but that’s much more rare than styloidectomies.
I can only speak from my experience but surgery will be done w/ you lying on your back. Once you’re asleep your head will be turned to the side away from the side to be operated on. I was placed in a body-shaped foam “container” to help hold my body in the desired surgical position. I don’t know if this is standard practice for other doctors.
Neck incisions often require the lower jaw to be dislocated to move it out of the way so the styloid can be cut back as close to the skull base as possible. That’s why many people have a very stiff jaw for a couple of weeks after surgery. For those w/ TMJD issues, the surgeon needs to be alerted ahead of time so the dislocation process can be modified or avoided. I didn’t know about this part of surgery when I had mine done. It came to light several years later when a member of this forum mentioned it. It’s definitely something to ask about when you interview surgeons. Of course you’ll mention your ACDF surgeries since that will also impact styloidectomy approach to at least some degree. Incisions behind or in front of the ear most likely don’t require jaw dislocation.
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I cannot express how thankful I am for this information! I had no idea that jaw dislocation could be part of the procedure. I will certainly discuss that with my potential surgeons at the consultations. Thank you so much again !!
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