I need to know if any of you your participants have had `styloidectomy`?
I have a pulsating tinnitus at the back of my ears and this is driving me nuts to say the least. I have been arranged for an op for this but this is a new discovery in Britain and they are not always certain about the outcome.One could easily have a frozen cheek,lips or even have a problem with swallowing afterwards they say...and the post operative pain is quite bad for awhile...!! I really do not know if I should really put my head under the surgeon`s knife...!! So, I am trying to gather as much information as I can!!
It it true eagles syndrome? Just bc your ear is ringing may have little to do with styloid being elongated? The styloid is is near front of the ear down to the jaw.
I Have elongated styloid but not eagles. However, I had a period of six months with constant ringing in my ears due to nerves gone haywire.
The ringing settled with more anti seizure meds .
Just asking because unless you have a painful throat and shooting pain when you turn your head it Might not be eagles. However, not a doctor, I’ve just been to too many in the US.
Maybe ENT’s remove the styloid for other reasons. Vascular Eagles should still have same symptoms I thought but just be closer to the styloid.
Like I said. I’m not a doctor. I’m cautious about any surgery before knowing it would not agravate more ringing. That’s why they would not do styloidectomy on me. Just because I had two elongated styloids did not mean they should remove. It simply was not the answer and they said it would cause more nerve damage and make more new symptoms to go in.
So this is my reply. Hope others have had your experience and can help better. Take it or leave it.
For my pain and for my ringing in ears, sound issues ( I wear earplugs everywhere for past two years bc of over sensitivity to sound ) I’m getting injections to block the nerves from in my mouth each week and some on my check to relax the muscle from the pain clench. I have noticed that wearing my ear plugs less and less.
Lifting you up in my prayers today. For only God is the greatest healer !
I have lost all sensation on my left side of head, all hearing on the left and swallowing and speech have been difficult. So far my experience is that the tinnitus is gone. my advice at this point would be I would NOT have this operation done just to cure the pulsatile tinnitus. I spent 7 years with a whole host of symptoms and the last two nearly constantly in bed in pain and unable to function due to nausea, fatigue and vertigo. For me there became no choice left. Do you have other symptoms?
Cambridge, I think you should go back and read past postings in the forum. Do a search for pulsating tinnitus. I think there have been quite a few people with that issue over the years who may not be on the forum any longer.
If it helps at all, I've had several surgeries (internal and then external to get more of the styloid out), and I thought they were relatively quick and easy recoveries.
Hi, I'm in UK too- my consultant didn't recommend having surgery until I got to the point that life wasn't worth living with the symptoms, because of the risk. Not there yet- mine aren't as bad as many on this site. Has your doctor done this surgery before? That would be a good starting point- plus Emma has very kindly written a list of all the Dr.'s who have been recommended. There are a couple in the UK, including a chap called Rogan Corbridge in Reading who several people have seen. So it might be worth not rushing into anything, but trying to see if you could be referred to someone with experience.
Really sorry too to others who've not had good results, thank you for sharing that with us, as it helps us make an informed decision.
Just to clarify I don't think I have had bad results its definitely to early to say 24hours for me, but what I was saying is this is a big operation with properly serious side effects that shouldn't be taken lightly and may resolve but also maybe long term. If your only symptom was PT you may come out of surgery with more symptoms than you started with. However like you said if life has become unbearable the chances of improving your situation rather than worsening it.
Mine is this constant pulsating in back of mu neck/ears. There is no pain. I also have a constant whistling tinnitus in the left ear but I can manage that, The one that sends me crazy is this banging noise in the back of my head. Especially after ny gym exercise and when I lay on the bed on my back. But there are moments that it disappears for awhile...and returns. The surgeon says there is a narrowing in the blood supplying vein because there is one or two small bones presin on it. So, he suggested that he wished to remove them and insert a stent as well...to make the blood flow more comfortable and less or nil noisy.But I cannot trust it...because he also told me that I might get a paralysed face and may be swallowing difficulty and very sharp pain afterwards for at least 6 weeks. Not very encouraging... brainsurgerynovice said:
I have lost all sensation on my left side of head, all hearing on the left and swallowing and speech have been difficult. So far my experience is that the tinnitus is gone. my advice at this point would be I would NOT have this operation done just to cure the pulsatile tinnitus. I spent 7 years with a whole host of symptoms and the last two nearly constantly in bed in pain and unable to function due to nausea, fatigue and vertigo. For me there became no choice left. Do you have other symptoms?
Mr Axon, who is the ENT surgeon has had only 25 surgeries under his belt; and he told me that not all of them had had good results. Some were successful some were not. he did not wish to elaborate on them. I felt I did not feel confident when he was explaining things to me. He did say that the procedure was still in its infancy ...!! How good is this Mr Rogan Corbridge in Reading?? Addenbrooke`s hospital is very famous on many operations but again...I do not know much about!! I really have to find some one who is more experienced about this.
Jules said:
Hi, I'm in UK too- my consultant didn't recommend having surgery until I got to the point that life wasn't worth living with the symptoms, because of the risk. Not there yet- mine aren't as bad as many on this site. Has your doctor done this surgery before? That would be a good starting point- plus Emma has very kindly written a list of all the Dr.'s who have been recommended. There are a couple in the UK, including a chap called Rogan Corbridge in Reading who several people have seen. So it might be worth not rushing into anything, but trying to see if you could be referred to someone with experience.
Really sorry too to others who've not had good results, thank you for sharing that with us, as it helps us make an informed decision.
Cambridge, I think you should go back and read past postings in the forum. Do a search for pulsating tinnitus. I think there have been quite a few people with that issue over the years who may not be on the forum any longer.
If it helps at all, I've had several surgeries (internal and then external to get more of the styloid out), and I thought they were relatively quick and easy recoveries.
Hi Cambridge
I had a styloidectomy for vascular eagles and Pulsatile tinnitus.
I had good results. Did not have my IJV stented. I am in the USA.
I know of a couple of people who have been treated by Dr Axon in Cambridge.
Hope you recover fully.
Mr Axon is the most experienced surgeon in the UK regarding the styliodectomy. I have found his advice invaluable.I think he is very honest and I appreciated his honesty. As for what I was trying to point out and my reason for posting is that I was actually trying to help you! I thought being in the uk having had the operation you posted about hours previously you might find helpful to know. I also wanted to stress the point that my perspective needed to be balanced with the fact I am just out of surgery and not someone months down the line. I was validating the fact that the complications you mentioned are a real possibility, I am experiencing them and if this was the trade off to get rid of Pulsatile Tinnitus I would at this point be unhappy at the trade off. I have lived with PT 7years. I had many other symptoms it was those not the PT which made me choose to have the operation I believed sharing the information I did would be helpful to you.
I am in the UK (Cheshire) and have had Eagles for a long time (confirmed at two hospitals). I haven't been able to find anyone who seems to understand the condition or will remove the styloid process due to the dangers and complications. Re pulsatile tinnitus - I used to have that very badly for years, until I saw a GP who diagnosed high blood pressure. When that was treated the pulsatile tinnitus went (as did horrendous headaches). I have other Eagles symptoms but not the pulsatile tinnitus.
Thank you very much for your honest revelation about Mr Axon and the operation that you had undergone. So, how do you feel right now,and have you any regrets or any other thing that you would care to raise with this issue ?Because of the real possibilities of traumatic developments after the surgery,this very thing is making me think over and over again.Since I live on my own and no one around me for immediate support, in case of emergencies,apart from dialing 999, I feel quite vulnerable to say the least.I think I have to postpone this pending operation again...What I find peculiar is that, this pulsating tinnitus comes on when I am in distress, upset,blown up tummy due to my IBS,and after the gym.For instance when I am watching a very emotional programme on tv or something similar ,just hearing the telephone ring suddenly, this pulsation comes on immediately. Or if I happened to be reading some insulting remark about me on face book!!! Since I have had my Bells Palsy, there has been a peculiar change in my immune system too. I get awful muscles tiredness,especially in my legs and awful stiff neck which also bring on pulsation in the back of my head.So, you see, there are a few things are running into each other. I feel my own GP feels quite frustrated by by complaints and so do I!! Thank you again for your reply.
brainsurgerynovice said:
Mr Axon is the most experienced surgeon in the UK regarding the styliodectomy. I have found his advice invaluable.I think he is very honest and I appreciated his honesty. As for what I was trying to point out and my reason for posting is that I was actually trying to help you! I thought being in the uk having had the operation you posted about hours previously you might find helpful to know. I also wanted to stress the point that my perspective needed to be balanced with the fact I am just out of surgery and not someone months down the line. I was validating the fact that the complications you mentioned are a real possibility, I am experiencing them and if this was the trade off to get rid of Pulsatile Tinnitus I would at this point be unhappy at the trade off. I have lived with PT 7years. I had many other symptoms it was those not the PT which made me choose to have the operation I believed sharing the information I did would be helpful to you.
Could you please expand on your experience a little further as to how you made the good progress and if any,you had discomfort and how long it did take you to recover. What I am also interested in is that, if it is at all possible, I would like to get in touch with those who have had this op successfully in Cambridge by Mr Axon and Mr Higgins. Mr Higgins, the surgeon who puts in the stent when Mr Axon has finished his part. I find this page very valuable since I came on it by the keen replies from good people who wants to help by sharing their own experiences...Thank you. Ruth said:
Hi Cambridge I had a styloidectomy for vascular eagles and Pulsatile tinnitus. I had good results. Did not have my IJV stented. I am in the USA. I know of a couple of people who have been treated by Dr Axon in Cambridge. Hope you recover fully.
Hello Cambridge - the pattern of your pulsatile tinnitus sounds like it might be linked to high blood pressure. Your blood pressure will increase with stress. With regard to the latter the levels considered 'normal' differ from country to country and one could rightly assume that differences in morphology of an individual may make a difference to the effects it has.
I am still indecisive about this operation. I just do not have enough and satisfying and detailed procedural explanation and its post operative results....!! Yes, I have noticed , my blood pressure has also an effect on this pulsating ..especially when under stress and having a bloated stomach too.!! When I do not feel my pulse...I do not get this pulsating tinnitus too strongly...but it always tries to come back on. I try to hold my breath.....it stops but for a very short time. I get it continually if and when my neck gets stiff....especially after a gym session. It is like a yo-yo type of struggle....never ends...!! The other thing that worries me quite a bit which is the visual appearance of my veins in my neck...hands and arms. They keep getting thicker and larger...I wonder if there could be some inflammation somewhere in my circulation !! I am just trying to explore all other possibilities before I feel that I have no choice but this operation. I already suffer from daily tiredness...fibromyalgia type of aches and pains...and I fear I cannot bare to have additional ones...So...I am indecisive.
Hi Cambridge, I can't offer you anymore help than any of the others but will offer you prayers that you will find some suitable answers.
I can offler a suggestion for bloating and IBS, The cycle is a difficult one because fiber is the answer to IBS, but fiber causes bloating. My doctor suggested a simple choice and it has helped significantly with the bloating. In the US and I hope in the UK, we can get a specific probiotic called ALIGN, it has a very specific strain of one type of good bacteria that has helped me, I have been using it for about 24 weeks and have almost no bloating. I think this could also help you relax and have one less stress. I don't know if you can obtain it or if it would work, but just offering a suggestion. It could perhaps even improve your pulsating tinnitus because anything that relaxes us and makes us a little better ofen has compounding results. It took a full 6 weeks to work its best, and I tried a Walmart brand, but not the same thing, Sorry I can't offer any big time help with the pulsating tinnitus. I have tinnitus but not pulsating, had it for 13 years, would like it to stop, but it is what it is. I do hope you find answers and I know how frustrating we can be to our doctors and how frustrated I can get with my own issues. Best wishes.