Thank you for the links to some of Kjetil Larsen’s articles. He’s been mentioned on here before & has been helpful in giving some of our European members their ES diagnosis. Glad you’ve found his work helpful, too, @jimjammer123!
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Hi @PatientD, have been reading your posts here on this thread… thank you for sharing it is very helpful to read your experiences… I hope that you are feeling better? My head is so foggy, I find it difficult to process everything… I’m sorry that everyones experiences was blending into now and I can’t remember who is who… I’m just asking you specifically as you have had a fusion with mr.T How much are you fused? is it skull based fusion? As in aai/cci? Do you have EDS? I have EDS & am fused Co-T1… I am worries about further surgeries especially around the skull base for either a C1 shave or removal of styloid in case it makes. the fusion unstable an causes more issues with tai/cci… Do you mind me asking if you have aai/cci and wether you had c1 shave or styloid removal surgeries after your fusion and if there was discussion or concern of making the instability worse or fusion unstable? hope that makes sense?! sorry if its a bit wordy!! xx
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Hi @Patient D, may I also ask who Mr.watkins at Queens is?
Hi everyone, apologies for the radio silence for so long. I have not been able to get on the site with my mobile for a long time now. I think its due to site not supporting my phone. My daughter got very sick again at Xmas so that & my own health challenges have meant no participation lately. Sorry. So to begin, I had promised some members that I would post image after styloidectomys with Mr Hughes & confirm whether he can remove to skull base or not. I will try to post images soon. But the answer is he CAN remove close to skull base (& he did on my left side last year). But for reasons I do not understand (& he will not explain), he did not remove the right styloid as close to skull base (difference looks huge on images). So you won’t be surprised to hear I am still struggling on right side. Left side is good now. So I am back with neuro etc trying to sort right side issues out. Mr Hughes has not ruled out taking off the rest for me but I have no words really to describe paying lots of money for an operation & then finding out too much styloid is still left. Anyway will try to post image soon & will try to get back on desktop here again to provide any helpful info or support I can soon. Take care. D
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Hi, truly sorry for slow reply. I am fused at C1/C2. Mr T does not fuse below that for instability (I think). I dont have EDS, believe my instability due to severe head impacts at 7 plus severe head pressure due to JV compression (C1/Styloid). Mr T only trims C1 slightly to decompress JV (he does not remove entire transverse process like Mr Axon has done - I would never advise that). As I was fused before styloid ops I have not had any increase in instability. Fusion worked from Day 1 and its stayed that way for the past year. Fusion does not happen at year 1, so I won’t get fusion scan now until year 2 (may 2024). If you have JV compression, then anything to reduce that pressure in head, if you are fused, is helpful based on my experience. But we are all different. All my operations, difficult as they were, have proved helpful. on foggy head you might find some relief with a Vodder.com practioner who has a Hivamat 220 deep ossilation machine on your neck & head (some of them dont know you can use it on head due to hair, but you can). You can search by postcode on physiopod & vodder.com to help you find them. Fluid comes back if you have VES, but it provides some relief for me (3-4 days).Take care. D
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Mr Laurence Watkins is a very experienced senior Neurosurgeon at Queen’s Sq in London, part of the National Neurological Hospital. He has taken an interest in instability topics and is very knowledgeable. He has helped me a lot with diagnostic tests & he is just a senior & sensible person to give advice on the neuro difficulties some of us are facing. You can get a private appointment with him at Queen’s Sq & he does help with referrals to his NHS practice. Hope that’s helpful. D
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So sorry that you’re still symptomatic on one side despite the surgery- did Mr Hughes maybe leave some of the styloid in place because it was too risky to take off more? @Isaiah_40_31 had this issue with one of her surgeries as the hypoglossal nerve was wrapped too tightly round the styloid. I hope that you can get an answer although it seems strange if he’s not ruling out a further surgery…so sorry too that your daughter has had health issues, sending you hugs & prayers 
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@PatientD I would like to know a few things about your surgery for C1 trimming by Dr Timothy.
- How long did it take you to recover from the first C1 trimming without the fusion surgery,
- How was the post-op recovery? any swelling, any new symptoms? what has helped
- How long did the surgery take? Do you have to stay (mandatory to stay) one night at the hospital after surgery or you can stay in a hotel nearby if allowed ( am asking this because hospital stay is expensive as I heard).
- Do you feel that the head pressure/symptoms went down after the surgery?
@PatientD - Unfortunately, we have a number of members who were told their styloids were cut back close to the skull base, & in retrospect - as in your case - one was, but the other wasn’t, & the longer side remained symptomatic. It seems no doctor is willing to discuss why this is the case, & some even seem insulted that a patient would ask such a question (casts doubt about doctors ability as a surgeon?!). I don’t understand this mindset except to say that perhaps doctors who do a lot of ES/neck surgeries don’t keep track of the details as well as they should on the post op report, so they really can’t remember from one case to the next why they made the choice they did regarding how much styloid to remove. It is very frustrating to have to consider revision surgery when things should have been done correctly the first time around.
I’m also sorry to hear about your daughter’s illness. It’s tough enough that you have to deal with your own health challenges. I hope she stays well for a long while so you can focus on what’s next for you.
Sending a hug & praying for you !
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Hi, the recovery was really quite quick in Jan 2022 as wound under ear swells much less than major neck incision surgeries with ENT. you do get some swelling (which affects JV at start), but it soon passes. If I’d known about Hivamat 200 machine that could have sped up healing & reduced swelling faster.
The first op did help me feel less pressure but for me it was not enough as the styloid was compressing JV too. Left side now both removed is good.
Surgery is not that long and I only stayed one day and night for the procedure. I know Mr T did operate on occipital nerves patient as day care case, but unsure if he’d agree to that where proximity to JV is involved.
yes the pressure did go down after surgery but for me it was still too high, hence deciding on more surgeries. But it did help me. I was in such deep trouble that any help was welcome.
Hope you find help you need soon. D
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Thanks, it helps to know I am not alone in finding one styloid was not cut close to skull base as promised/reported. I have found Mr H does not discuss this as you say, despite an email, a letter (with image photos) and an in person consult. I suspect its probably their usual concern about professional negligence claims which their insurers insist they do not admit any liability for. I have made it clear my health and not law suits is my driver. At least Mr H did not rule out another operation to remove what styloid remains (by going in under ear this time, not neck), but trying to get Venogram as next step to see what has changed since ops. want to make sure we know what issue is, but I think it is the styloid being too long. Thanks for your replies, its good to talk with members who understand, especially when the medics seem not to know of our plight. D
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Thanks, how quick was the recovery, 1 month or 2 months until you feel the swelling subsided and you felt fine? Did you get the vertigo after the surgery or you had it prior to the surgery? Any new symptom from the surgery?
Thanks for the update re Mr. Hughes, that is very frustrating but at least you got a scan showing what’s what, and it sounds like you have options going forward
Yes but tbh QS- who did the scan- did not comment on this, nor did Mr H when I saw both for post scan consults in Jan this year. then I went in March this year to see Mr T about my fusion op & he is really great/helpful as he is the only consultant who has the scans on screen to show you and will take screenshots on your phone if you ask him to. we mostly looked at fusion but as he had identified my JV compression in first instance & trimmed C1 both sides we also looked at Jvs & then I could see that one styloid was cut close to skull base & the other was not, so I took images on my phone. Without Mr T I do not believe I would have known about this. I have learnt is as important to think about what the radiology report does NOT say and not solely to focus on what radiologist decides to report. D
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I’d say recovery was less than a month for op on one side only. After op there was a brief “honeymoon” period where things felt much better, then body healing process kicked in & swelling began at which point much of benefit felt lost, but as swelling/healing resolved the benefit came back. D
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Hi again
On Friday I had another Venogram of my brain at Queen’s Square as I remain symptomatic on right side where styloid was not removed to skull base.
In case it helps other members I paid for this privately to avoid NHS wait & to try to get Dr Cowley again (sadly mix up meant I did not). This time Venogram had really bad effect on my brain for few days after but its starting to recover now a bit now.
I get results this week (hoping tmrw). This time they could get to right side of my brain where I am symptomatic which was good. I assume this is because my surgeries in 2022 opened up my Jvs enough to allow this.
Costs were £2309 in total (theatre £1626 and Accom for day case £683). Queen’s Square have now refurbished the private Bloomsbury Ward so I finally got to see it this time round.
Need a consultant to order the Venogram for you so is consultant fee to add to above costs.
Sharing in case others need this procedure now/in future. take care. D
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@PatientD thanks for always sharing your journey. It does help some of us. Did the venogram show that the remnant of the Styloid was still pressing your IJV? Usually doctors will tell you that after the procedure before the official report.
Secondly, what are the remaining symptoms? I know you experience Vertigo as you said a while back.
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All so expensive for you…I hope that the venogram can shed some light on your remaining symptoms…hugs & prayers
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Thanks for sharing @PatientD , are you saying the CTV of head and neck cost £2309 at Queens Square?
@Isaiah_40_31 I have a question about prednisone and its impact on healing after Eagle/styloidectomy surgery. I’ve been researching online, but I’m getting conflicting and inconclusive information. I’d like to know if prednisone can potentially slow down the healing process too much, or if it’s generally considered beneficial for this type of surgery. Do you know if there is a general consensus on the pros and cons of using prednisone post-surgery? Thanks!
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