I’d suggest to blur the personal details @PatientD …
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Hi Hema, you asked some qus I did not answer yet.
Left styloid- Mr Timothy cut at skull base but left it inside me (during C1 trim) Jan 21. Mr Hughes removed it in 2022. My left side feels really good now.
Right styloid- Mr Hughes removed it 2022 but I remained symptomatic & in March 2023 I learnt he had not removed it to at skull base as expected. I have revision surgery with Mr Hughes on Aug 25 2023 to remove at skull base (I hope).
Mr Hughes only operates at Cleveland now.
Removal at skull base is high risk because you are right next to facial nerves (facial paralysis risk) and to JV too. They monitor your nerves during surgery and move them away before cut styloid. can cause some facial weakness. But with a good surgeon with experience (eg. Axon/Hughes) I think odds of that are low and for me with VES saving my brain from excess blood/fluid trapped in skull is highest priority as affects me 24x7. Most ENT won’t touch this operation hence why it is so hard to get help in UK. my own NHS trust has no capability to perform this and Axon has refused to help for last 2 years.
Fluids bag- most hospital use canula from operation to put a saline fluids bag with drip to keep you hydrated post surgery. As I can drink after these ops I don’t need to and first op I was so swollen in neck/face/stomach from fluids. did much better on swelling second time when no fluids bag used.
Hope that helps answer your questions. D
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error- Mr T was Jan 22 not Jan 21. Type. soz. D
My error thanks. I dont know how to do that. will ask jules to help me. D
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Ok thanks i understand. Why didnt hughes remove the styloid completely during the first surgery. This is my biggest concern that if only a portion is removed and what if it doesnt solve the issue. Also what is deep oscillation you mentioned for recocery post the op.
Wow thats a lot. Im sure you will be fine. Im not sure if my first surgery doesnt sort things out, how will we manage the follow up surgeries as it is very pricey
@PatientD , I’ll just repost the fees, not possible to blur your details from the screen shot, I’ve deleted that post.
Fees for services:
Hospital fee E2330 Package removal of lesion of Para-Pharyngeal space: £4,450
Surgeon’s fee Package removal of lesion of Para-Pharyngeal space: £1,748
Anaesthetist’s fee Package removal of lesion of Para-Pharyngeal space: £866
Follow up consultation: £260
Total (2 nights): £7324
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Sometimes it’s not possible because it becomes too risky depending on where the nerves are, for example @Isaiah_40_31 had her hypoglossal nerve wrapped right round the styloid so hers one side couldn’t be removed to skull base. I don’t know why it wasn’t done for @PatientD , did you ever get any answers, @PatientD ?
Good question. They don’t discuss it when you ask. A usual thing Isaac says. Prob legal or insurance concerns.
I now suspect left fixed only because Mr Timothy had already cut it at skull base but as they won’t discuss can’t be certain.
Mr hughes op reports said removal to skull base but not close on right side. So either an error or he does not get very close to skull base. Fact he is doing revision surgery with a different incision method seems significant. D
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Deep oscillation question- using Hivamat machine from physiopod, I have treatment with Vodder therapist (expert on lymph), using the machine. Can also hire/buy machine for home use but high £. Great at fixing scars/reducing swelling post op. D
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Ok thanks a lot. Is one night stay at the hospital enough after such a big surgery?
Think that depends how far you have to travel and how you will travel. I had a family member drive me on discharge and I used pillows behind head for extra comfort. About an hour drive. Guess taxi/train could work if have someone to help with luggage. But scaring means public May stare. Obviously they want a companion with you on discharge. If you have any dietary needs notify in advance is best. B4 op prepare home with soft food etc & anything else for your recovery. D
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Members have posted about scar healing/post op recovery. Take a look & prepare/order things in advance you need (eg silicone gel/oil for scar). D
Ok will look that up. First taking the jab and not had a quote from dr hughes either. Thanks for all your repiles.
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Ask his secretary to sort quote. She is very helpful. Hospital admin systems are slow. D
Also ask for operation date to be booked. He is very busy & lists get full up. Have had to wait 5/6 weeks for ops.
Suggest don’t have injection without hughes ok first. It may affect his willingness to operate if don’t get his ok first. Especially as he said no to injection. D
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Ok will ask him then. Good idea.
Will call her on monday. She told me on friday that Mr Hughes is going to talk to Queens Sqaure about my ct scan and ask about the extent of carotid compression.
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Hi @PatientD so is this the one you are having the revision for on the 25th right? So Mr Hughes said he removed it from skull base but he hadn’t is that right? Sorry there are so many posts i am losing track.
Yes I am having revision surgery on 25/8 to remove right styloid close to skull base. I found out in March that I remain symptomatic on right because too much styloid remains.
If you are not yet being treated at National Neuro hospital in Queen’s Square London (part of UCLH) I’d ask your Gp to refer you there urgently. Read Walton Centre near Liverpool have deep expertise in pain management topics but never been there. D
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