Waiting for UK referral

Exactly, I'm really stuck between them. The skull base surgeon in London is absolutely brilliant, he has a wonderful bedside manner and is so easy to speak with, I never felt like he was rushing to get me out of the room and he answered all or my questions honestly and in a way I could understand. I guess my only fear is that he's never done it before, he was the one that contacted Mr Corbridge so I could get a second opinion. Like you said, if the chap in London is willing to take more off then I would be very tempted to go with him especially as I feel so comfortable dealing with him.

Have you had your surgery? How are you feeling? Sorry if you've already answered this elsewhere.

I'm going to ask the surgeon in London how much he would intend on removing. Obviously there are muscles attached to the styloid process, am I correct in saying these would be left intact, I would have thought there would need to be some left behind to enable the muscles to anchor onto something to aid with swallowing etc.?

Dear Delusive.my name is Zdravka and I am waiting for mr.Carbridge replay. Did not get yet his answer?I mentioned I Will pay for it! I got valuable informations from you about mr. Patrick Axon and mr.Michael Patrick Rothera! What is the name of the surgeon in London? I am so confused..when I read all your posts my friends...I dont know what to do..where to go and how to cary out the surgery as soon is possible. Acording what I read..I need I nice person ,because I am scarred to death. AAlso I dont want to do operation and to be decided on the day of operation..is it external or intraoral.I dont want intraoral operation! So. what and how Will I come to see this dr.as soon is possible? I am from Slovenija as Jules you know..and I cant travel here and there...I was thinkign it goes like this: you have a date,they see you examine you,run some tests and they do operation! Ofcourse all paid privatly! TThank you...i AM so sad...and pain is terrible....no medicine cant I take for pain, because of pain stomack...so sensitive...thank you for replay! Zdravka

I think the ligaments are just removed from the styloid process- it hasn't affected my swallowing at all! That doesn't feel any different. Mr Axon is really nice- the only thing I would say is that he doesn't seem to be very convinced that a lot of the symptoms were down to ES, but was very keen to help as I have pulsatile tinnitus, and he's really interested in that. I have to be honest- the vascular symptoms I had are hugely better, so I'm really glad I had the op, but I have nerve pain still, that's not improved at all. I think maybe that the Trigeminal nerve was already damaged by the styloid process. Although I know nerves can take quite a while to heal. I'm still thinking about whether to have the other side done- it's compressing the jugular vein as well. I don't have as much pain that side, but then I don't really want to leave it in case it gets worse... I have been taking amitriptyline for a while and that does help with the pain though.

delusive said:

I'm going to ask the surgeon in London how much he would intend on removing. Obviously there are muscles attached to the styloid process, am I correct in saying these would be left intact, I would have thought there would need to be some left behind to enable the muscles to anchor onto something to aid with swallowing etc.?

I have had both my ligaments removed, and one styloid process cut back to my skull, and the other shortened as it had a nerve wrapped around it and couldn't be removed entirely. My surgeon said he pulled the muscle away from the styloid that was shortened so it would have no path for regrowth (thus also the removal of the ligament). I have no problems with swallowing or anything else in that regard. Still healing from the second surgery so am a bit numb in my face and sore in the neck and jaw, but almost all of my ES symptoms are gone. I had both done externally.

delusive said:

I'm going to ask the surgeon in London how much he would intend on removing. Obviously there are muscles attached to the styloid process, am I correct in saying these would be left intact, I would have thought there would need to be some left behind to enable the muscles to anchor onto something to aid with swallowing etc.?

Isaiah/Jules, that’s really useful information, thank you very much, I’ll certainly bring this up with my surgeon when I speak to him. He said he frequently operates in this area and has removed the styloid along with specimens such s tumors so doesn’t seem that phased about doing the operation, his main concern was the risk of first bite syndrome which he said can last for around a year, a small price to pay for a resolution.

Zdravka, I completely understand your pain. My experience has been as an NHS patient, I’ve been really lucky in that I have over the last year been given valuable advice on this forum and spoken to work colleagues in our radiology department (I work at a hospital). I’m not familiar with the healthcare system where you are but all I can suggest is to try and find a skull base surgeon and get a 3D CT or panoramic X-Ray, I’m not an expert but I was lucky enough to get these scans and get a referal to a skull base surgeon. I haven’t asked permission to give out his details out but these guys specialise in this kind of surgery and although not many have seen Eagle syndrome, this is their area of expertise.

@Jules - I’m also going to look at getting my other side done eventually, its not as bad but I keep getting very familiar ES pains and it sounds like I’ve got grit in my jaw when I try and yawn (which really hurts), anyway, thanks again for all the advice, I’ll keep you posted :slight_smile:

Five days after my first surgery - right side - I acquired First Bite Syndrome (FBS). It was very painful. Over the next 6 months it subsided to a tolerable level then I went over the handle bars on my bike & landed on my face & Voila! FBS was back in full force. I'm almost 2 weeks out from my second surgery (left side) and have not gotten FBS on that side, however, for some unexplained reason, my right-side FBS is flaring up again. I heard from someone on this site that hers never has gone away but the pain has reduced to a tolerable level. There is also someone on here who has FBS as a consequence of her ES (she hasn't had surgery yet). FBS is not inevitable after surgery, and as you said, is not a reason to not have the ES surgery. It is much more tolerable than the problems ES causes and can be treated w/ things like neurontin if it is too severe.

delusive said:

Isaiah/Jules, that's really useful information, thank you very much, I'll certainly bring this up with my surgeon when I speak to him. He said he frequently operates in this area and has removed the styloid along with specimens such s tumors so doesn't seem that phased about doing the operation, his main concern was the risk of first bite syndrome which he said can last for around a year, a small price to pay for a resolution.

Delusive and others…thank you for replay…I have to say that there is no way somebody can operate me here…that is why I am so desperate…delusive can you ask your scull base surgeon to give me his contact…I would be like private patient…there is nobady here…He sound so experienced…I am desperate…please help me if you can-thank you! The whole hospital dr.where observing my CT-3d…they dont have a clue to be honest…but what to expect…for 5 years I am in agony and went to ETN and orofacial surgeons ect…they where unable to.diagnose me…it was me who went ahead by myself and found out my diagnose…so would you trust such a medical suroudings…I dont think so! For that reason I am asking for help-thank you!

Hi Isaiah, that's so unlucky that you went over the handle bars, ouch! FBS seemed to be the main concern when I spoke to the surgeon, guess its just the luck of the draw, I'm glad to hear you're has improved.

The bike accident may have been caused by my ES. I was having problems becoming light-headed when I exercised. I had not been diagnosed w/ vascular ES, but I think when I held my head in certain positions, my left styloid may have been compressing something vascular which resulted in the dizziness. At any rate, it's gone now so I should be able to exercise safely once I'm healed.

Yes, FBS does seem to be "the luck of the draw". Many people on here have not had a problem with it post op. I do encourage you to go ahead with surgery especially if ES is impacting your ability to live life normally. FBS won't do that!

:)

delusive said:

Hi Isaiah, that's so unlucky that you went over the handle bars, ouch! FBS seemed to be the main concern when I spoke to the surgeon, guess its just the luck of the draw, I'm glad to hear you're has improved.

Hello to everybody,

I just read all Your last post and decided to get Your advice one more time.

I wrote before in the forum my story.None doctor had disgnosed me, I was diagnosed by myself looking through the internet, the scull photos ect to get the reason of my terrible pain (already 1 year).

I'm from Poland and was operated externally 3 months ago.I had my styloids both about 5-6 cm, and only left side was operated but they took away only 2,2 cm. There is not imporve after surgery. The styloid is shorter it's true and I have so difficulties to speak with Suregons and explain them then the pain is still there and the styloid is pushing the carotid & the nerves all the time. My main symptoms are: 1) terrible nose and sinus pain, 2) post nasal drip all the time, 3) pressure on nose and palate especially when bend my head down, 4) pain in my neck and can activate the nose and face pain pressing the styloid from behind. And a lot of other symtoms. I'm looking for some Suregon in Europe,becouse I have lost my hopefull that in my country exist the doctor than know this issue and could understand that sometimes the styloid should be take off in whole part. I also send my photo and request to the Clinic where Dr Corbridge work. But till now I didn;t receive any opinion. Please if You have some direct contact to some Suregon in Europe , UK or different I would be grateful. Here I'm enclosding some photo, colour one - before surgery, and white/black after surgery of left side. Thanks a lot. Agnes

enclosed the photos

enclosed the photos.

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Agnes- I'm sorry that you've not had any success for your surgery. It has happened with members in other countries too that not enough has been taken off. Zdravka has found that she's not had any reply either- she's from Slovenia and there's no surgeons who can operate either. I can't say why- but I know that the UK National Health Service is under a lot of pressure, so waiting times are long for UK patients. Mr Corbridge and Mr Axon are both NHS consultants, and do a bit of extra private patient work, often this is only one day a week, so I would imagine that they're still quite busy even if you are paying for the treatment. Have you contacted Mr Corbridge at his private patient address? ( http://www.circlepartnership.co.uk/consultants/rogan-corbridge) Not sure which one is listed on the Doctors List. Zdravka is trying to contact a doctor in Spain as she's had no reply yet from Mr Corbridge.

Hello,

I have contact Dr Corbridge, after seeing my photo and beeing in actual situation that after surgery there is no reilef , Dr has a doubt this is Eagle Syndrom that cause the pain and not reccomend the surgery now. But I'm very upset with this opinion becouse my pain is going exactly from the neck and is pushing and pressing the soft palate, the nose, and the face. Especially when bending mt head ect. I fill the styloid all the time. Morover my right side where the styloid is long also hurt but the symptoms are a little les painfull. Morover I have the issue with enlarged tonsils and enlarger lymph nodes. I;m really looking for some suregon that can make the second surgery and possible for some of You that was in the same situation that first surgery didn;t get the results but after take whole of styloid there was the relief. Thank You, Agnes.

I'm sorry that he doesn't think he can help, but at least he's honest and isn't giving you false hope. I had my whole styloid removed, but still have a few symptoms- some neck pain, and I still have a very stuffed nose at times- I had hoped that it might go after surgery but it hasn't. I haven't had major sinus problems though. The fullness/ pressure I felt in the ear the side I had done has improved, but my hearing is still worse that side. So it hasn't been a magic cure, although I hope that healing is ongoing...

I suppose it's hard to tell too if all your symptoms are down to ES when you have tonsil and lymph node problems. Might be worth you starting a new discussion to ask about the sinus issue and success with surgery, and hopefully some other members might be able to help you. Good luck!

Agnes here is adress of dr.maiz in barcelona just google dr.javier Maiz and you will find his web…he is nice and did 30 surgeries on es…i dont like idea of intraoral surgery due to another condition called Burning mouth syndrome…he is nice but I will look for external.surgery…try with him…you can mention thst Zdravka Rostocil recomended him to you…hugs and good luck-zdravka

Hello Zdravka, thank You for Your comment. I will verify this contact, but anyway I think in my situation is necessary also to have the next external surgery, as my pain is going mostly from upper part of the styloid. Pain on teeth, jaw, gums, nose, sinus ect. Anyway I have another contact here in Poland for another profesor, I have the contact from person that had 2 surgeries before, and only the third (made by this profesor) gave the good results. I have visit tomorrow Thursday 24/09.

I will try to ask if there if she can operate also people from abroad, and which would be the procedure.

I hope tomorrow know some good. Regards. Agnes.