Thanks for that @Dontgiveup and I won’t give up hope.
Don’t let it put you off at all - your case is different to mine and you are absolutely doing the right thing and in very good hands. I’m sure you will have the luck of the Irish tomorrow and it will make a big difference to you. I will be thinking of you. 
I am so, so sorry that this has happened, I can imagine how hard this is for you after being so close to surgery…I have seen a change in protocol with Mr Axon & Mr Higgins re testing, I was lucky enough to see him before this. I did know that he has a special interest in pulsatile tinnitus, & have suggested that members mention this if they have it, but didn’t realise it was so important on their protocol. I know it’s no help to you now, thinking of you and sending you a hug 
@DogLover, I cannot fathom the depths of your despair, frustration & pain over being dropped like a hot potato at the last minute.
There is something amiss with any medical system that won’t do what they can to help relieve a patient’s suffering to whatever degree they’re able. I do think that in your case a promise was made (surgery) & now that promise has been broken & explained away in a manner that does not make good sense. Your styloid removal & treatment for the jugular compression would make a difference as you noted.
I understand why Mr Axon has lost your faith, & I will be praying for you to find someone who is willing to do what needs to be done to help you. Perhaps your FB connections have recommendations?
Wishing you the best & soon!!
@Dontgiveup any news about the surgery? I am praying for you that things went smoothly. Hopefully we will hear from you soon.
@Dontgiveup ~ I’m praying for your recovery along w/ @KoolDude & @Jules & hope you have good pain management in place. Looking forward to your update when you’re feeling better.
Hi everyone. Thank you for your thoughts. I was very overwhelmed and nervous before surgery. I was very upset and devastated for DogLover too.
Surgery went very well. I think it was around 1hr 30 mins. Dr Axon said everything went well, no complications or setbacks. He said he took my styloid back to the skull base and shaved my C1 back to the vertebral artery. Though he did say he doesn’t go within the foramen.
I have no facial, tongue or eyelid paralysis. Just a very numb ear and surgery site pain. My whole body hurts like I’ve been hit by a truck, but I know anaesthesia can have an impact too. My throat was extremely sore and swallowing was a challenge post surgery but I think that was also the tube and the anaesthesia.
But my heart is finally calming down. It was always around 100bpm whilst sitting and would increase to 135-145bpm whilst standing/walking and eating. I’d have to stop eating completely. And then I’d get extremely breathless.
Now my heart has been resting at about 85bpm. It still starts to beat wildly sometimes, especially after eating, but not as extreme as before surgery. I hope this improves even more in time. My heart was going absolutely crazy after waking up from surgery. It sounded like jumanji on crack. I didn’t get much sleep that night. But in the last couple of days it feels better.
Oh and my sweats and chills have subsided too. The first night in hospital I was extremely hot and the nurse was shocked as I had been sweating and completely soaked my dressing gown and bedsheets 
Sounds crazy but although I felt hot I didn’t know I was sweating so badly. But I definitely felt different. It didn’t feel bad. Before I would be constantly having the chills, flushing and getting random sweats for no reason. My body couldn’t maintain its temperature. Those have stopped as of right now. I just feel very warm. But it’s more of a content feeling.
I haven’t had any nausea since surgery. And the nausea prior was awful. My head doesn’t hurt as badly. I noticed after coming around from surgery that the head pressure wasn’t really there. Not to the extent it was anyway. I have a heaviness feeling in my head and pressure behind my nose that makes me feel like I’m drowning. But I can’t really tell what’s caused by inflammation at this point.
Still feel strangled. But I hope the fullness and pressure behind my nose/throat disappears over time. Maybe the nerves need to heal so that sensation eventually passes. It’s still difficult to talk too. I am extremely hopeful that these symptoms disappear as they distress me a lot. These are the symptoms that are keeping me nervous.
It’s been a nightmare of a time and I still feel all over the place. I’m getting by on paracetamol and ibuprofen and taking morphine when I’m desperate. I am excited by the changes and am hoping for more resolution. It’s only been 3 days. So it’s extremely early days. I also realise that the other side may need to come out. Im getting ahead of myself already. It’s been a rough ride and I just want my life back.
I hope this was helpful! I did notice some immediate changes as described above. I just hope the improvements keep on coming. And I will update everyone on the changes.
I am extremely pleased with the outcome of my surgery. Thank you to everyone who gave me support and advice. It helped me keep going and gave me the reassurance to pursue surgery. Any questions I’ll be happy to answer.
Thank you!!
Thank you so much for this very positive report, Dontgiveup. You will notice positive changes as time passes. Some can take awhile (months) to gradually appear. You may have some setbacks along the way, but it sounds like you’re already moving in a very positive direction. I’ll keep praying for your symptoms to resolve sooner than later.
As for the need for a second surgery, that’s a wait & see. If you still have significant symptoms in 4-6 months then surgery may be on your horizon. For now, your body & mind just need to focus on your present recovery.
@Dontgiveup i am extremely glad that surgery went fine and hope any residual symptoms also go.
I would like to know if you notice that body/muscle tightness is now relieved? What about brain/cognitive symptoms ? If you go back to your symptoms, did you notice any of them relieved and if so how many? I know it is bit early talking about symptoms relieve but I heard from others that brain IIH symptom relief is noticed quickly.
Hey @KoolDude
It’s really hard to tell right now since the surgery pain has been masking a lot.
The thing I noticed first after coming out of surgery is that my head pressure didn’t feel present. It’s hard for me to trust that things will get better after suffering for so long. But that and the nausea were the things that seemed absent. For muscle stiffness/tightness. Yesterday I would have said that it feels it’s alleviated. But today it’s back. I made a mistake of not taking my pain meds on time so I’m paying for it now.
I would say my cognition is slightly better. I feel more like myself at least. I’m not having to fight so hard to bring my thoughts forward.
It’s hard to say for sure since I’m still on medication and having pain and inflammation causing things. Today I feel a lot worse than yesterday. I’m expecting it to be up and down. Especially if I oversleep and miss my next dose of pain meds 
I will absolutely let you know what’s resolved in time. My body does feel somewhat more relaxed. Like it can finally rest. And it feels like heaven when the pain is under control and at a minimum.
I know this isn’t extremely helpful to your questions but I hope it helps a little.
Thanks @Dontgiveup, the is more than I expected given it has only been few days since surgery. I know there will be pumps in the road during the coming months as you recover but these are good early signs. I wish you quick recovery.
Dog lover,
You may be onto the differences in how patients are treated private vs NHS. Pressure is likely coming down from somewhere to change criteria for NHS patients. No one will openly state this and a lot of it politically and somewhat data driven. This is not uncommon in US with insurance systems such as HMO, PPO, etc. Kaiser and HMO’s are notorious for this withholding of treatment and ridiculous criteria. No matter what country you are in, the insurance companies are there to make money or the govt sponsored health programs to save money. Although somewhat cynical of me, it’s the nature of the beast to withhold care. You have to jump thru the hoops and check the right boxes and be dogged to get the care you need. I know you wont give up. Hang in there and keep pushing.
I didn’t get a chance to read closely about your brachiocephalic compression but I can suggest a possible consult in US in LA with Dr. Aaron Filler. He did surgery for TOS on me years back. He used to work out of UCLA Neurosurgery, then went off on his own. May be worth a look see on his website:
So pleased that you have noticed some improvements already! It’s easier said than done not looking too far ahead & trying to not worry about remaining symptoms, hopefully soon the strangled feeling will improve & your talking too…Take it easy and best wishes 
Things sound good for so soon after surgery, Dontgiveup! I want to remind you that days 3-6 post op are when the operative swelling peaks so symptoms can flare during those days (& yes, keeping the pain meds on schedule really helps during these days). You should begin to notice more good changes starting in weeks 2-4 after surgery. I set the alarm on my phone to remind me of all the times I needed to take meds during the day/night & kept my phone near me so i stayed on schedule. It was annoying but helpful. 
I hope staying on schedule going forward keeps your pain at bay!
Thanks @Isaiah_40_31
You are correct. I am currently feeling a lot worse and am trying to pull myself together. This is exhausting. My mood is also very low, much like before surgery. That was quite a fast decline from yesterday. I just hope this stage doesn’t last too long. I am exhausted.
So sorry that you’re having a rough day, I hope that you turn this corner quickly…at least you know it’s ‘normal’ to feel like it, hope that helps…hugs to you
The first few days post op are what I call the “anesthesia honeymoon”. It’s the time when you still have the drugs from surgery in your system helping to dull the pain & keep symptoms at bay. As those meds gradually dissipate (usually by day 3) the reality of the surgical pain & post op inflammation rear their ugly heads. Again, keeping your head elevated anytime you lie down, icing your neck 15-20 min on & 45 min off, as often as you can over the day, & keeping the pain meds on board will help you weather these next few days. I remember that period when I went through it. No fun for sure. Part of your down mood may also be a side effect of the pain meds, & if you’re taking Prednisone or some other type of steroid to help reduce inflammation, those are notorious for having side effects that affect mood.
I will pray for you today and will hope tomorrow is better. 
@Dontgiveup i am also praying for you but at the same time realistic. I think patience is a key in the first few weeks.
NHS as in Niagara? Did you have your surgery in by a Niagara ENT?
Sorry, trying to figure out the physician situation here.
Post deleted by author.
NHS is National Health Service here in the UK