Hi @LG18, site would not let me reply to you in your thread, so posted reply here. Good luck with GP visit. D
Unfortunately, my doctor’s appointment has been pushed back to next week! I found out as I was walking down at 9 AM today via text, which was very annoying because I’d read your post here and psyched myself up for it.
Never mind, though, gives me more time to organise what I’m going to say I suppose. Thanks a lot for your advice. What you’ve told me will be a huge asset; I’ll let you all know how it goes.
I’m still a little confused about how the referral works. You mentioned that afterwards I can think whether I want a private consultation, so would the referral from the GP qualify me for both an NHS consultation (which would have the associated wait times) and the option to book a private consultation? And then I’d just have to pick?
So private/NHS best kept separate at early stages as you decide which route to take.
Mr hughes does not insist on a GP referral letter. Some private consultants (the more old fashioned ones) do want a GP referral letter.
You can just book Mr Hughes private slot yourself online at Circle Hospital website or call/email his Secretary Amelia if want to see him at cleveland Clinic in london, she is very nice & helpful. If your GP does not refer you to him on nhs then I suggest you book private slot with mr hughes and ask him to refer you to his NHS practice at UCLH. D
A pain your appt being delayed, but I hope the extra time is useful to decide your plan!
I read in another thread today that member has had good surgical outcome in UK with Mr George Mochloulis. Not sure if he only operates intra orally (not to skull vase), but great to hear of another UK surgeon who has helped another member. D
I’ve added Mr. Mochloulis to our Doctors List for England.
So am now 11 days away from surgery to remove styloid/ligament on left side. Knowing what this involves (after same op on right side), I am not looking forward to going through that pain and post op struggle for a second time. But I know I cannot carry on with left side pressure & ongoing brain damage from trapped blood. I just hope the operation will help resolve things. This will be my sixth op this year and I don’t feel my body or spirits can take much more now.
My left side JV was very compressed and am worried about scar tissue & whether JV will open. Did I read in US that vascular surgeons are present to help remove any JV scar tissue?
Any advice from those who have had a second operation, one on each side, would be appreciated. Life is just so difficult with this ves condition. D
The only US doctor I know of who has a vascular surgeon present is Dr. Hepworth & maybe one doctor in Sacramento. Others will cut the styloid back beyond where it’s compressing the IJV, but it’s ultimately up to the patient to determine if IJV compression symptoms resolve sufficiently after surgery. In some cases symptoms do go away w/o any additional intervention. In others, ballooning is necessary & if that doesn’t work then stenting. As you know, it can take a few months post op to realize the full extent of surgical benefit so try not to be too concerned if you don’t have immediate resolution when the styloid is gone.
I didn’t have VES, but I can say my second surgery was easier than my first, & I healed more quickly. I hope you find this is true for you, as well. I’ll pray for that, too.
Thank you that’s helpful. D
I really do hope you get the relief you need with this second surgery, as you’ve certainly been through the mill this year. Will be praying for you and following closely for updates.
I’ve spoken with Dr T’s secretary Samantha via email and she’s quoted me circa 15k for a C1 shave…I presume if you paid privately you would of known exactly how much you paid, so I wonder why I’m being quoted 3x as much?
So sorry that you’re having to go through another surgery, 6 in one year is tough…I had a year between mine, so was more recovered than you, but my second surgery was easier, I don’t know why, I did have the side which was causing most compression & pain done first though. Knowing what to expect makes it a bit easier.
I’ll keep praying for you, & hope that this surgery resolves your vascular issues, thinking of you while you wait
Ah, that may be partly my fault, but I can’t figure that price. So he charged me c£5k for his fee plus Anesthetist. For first C1 trim I had private health cover. So they paid one night stay/theatre fee.
For next C1 trim I had to pay him extra £5k again for C1 trim on other side. But that was combined with my spinal fusion op so maybe most of the costs were hidden in fusion fee.
But if he charges £5k fee for his C1 trim, am very surprised if hospital/ theatre fees are £10k on top. Did they give you a breakdown of the quote? D
In interest of posting accurate private ENT costs here for others info my invoice for left styloid removal to skull base on 18/11 with Mr Hughes at Cleveland clinic just arrived. One night hospital stay is £3255 (a lot - they front load the costs - second & subsequent nights much cheaper), Mr Hughes fee £1998, Anesthetist £825, making a grand total of £6078. wish he operated at a cheaper hospital but he only does private ops here now. D
Hi, so went for Vodder lymph session today to try & get fluids/swelling down. Yesterday fluid pressure in skull was so bad I was scared to sleep. Today my Bodyflow machine hire (£150 pm) arrived to allow me to do lymph post op work myself at home. Started this evening and optimistic it will help. Fingers crossed. D
Mr Hughes confirmed removal styloid to skull base on left side
Vodder lymph sessions reducing fluid trapped in skull, but still bad in post op week one.
Bodyflow machine for lymph fluid moving works well. I can feel the fluid moving still after 20 min session ends. Treatment aim is 4 sessions per day. At £150 for a months hire it’s very good value and means can help myself in between more costly therapy sessions. Can recommend this for use by others now. It comes with therapy manual but still figuring out best ways to use it.
Anything that reduces agonising pressure inside skull is very welcome right now. D
Good you can feel it helping! And good styloid’s been removed right back to the skull base
I hope that the swelling goes down soon & that the head pressure reduces, hugs & prayers
@PatientD, I love how your optimism shines through even when you’re suffering significantly. Thank you for keeping us updated & offering helpful information on our forum. I am also praying for your full recovery after all the surgeries you’ve had this year. Your body has lots of recovery work to do & being patient sounds like something you’re good at. It will pay off.
Good news- I finally had a NHS initial telephone consult with National Neurological Hospital at Queens Sq London this week after many months on waiting list. Have asked for help with diagnostic scans as next step to see if removal of styloids & C1 tubicle trims have now decompressed my JVs or not and if blood trapped in skull has decreased. Will need to recover post op first but hoping for scan early next year
Registrar covering clinic for mr Watkins asked me if I needed NHS help- sigh. Had to politely explain had endured 6 operations without any help or support from NHS this year and that I was far too ill to obtain private medical cover from anyone. I was told I would get follow up call or letter about diagnostic test soon.
Another demonstration of how VES patients are struggling to get the help we need. D
I’m so glad you finally got a call from NNH at Queens but am sorry for lack of financial assistance (if I understood correctly - things work much differently in the US).
I will be praying that by the time your testing is done, you’ll be feeling much better, & it will verify improved jugular flow & optimal blood in your brain rather than excess.
I hope you’re able to rest during the upcoming holidays & have lots of family/friend support.