Surgery with Mr Hughes London this Friday

Interesting…I think most members seem to have only had a short course of steroids so I’d guess the benefits of reducing swelling & inflammation for those few days would outweigh slower healing? Just my opinion, I’ve not done any research though! I does seem to me that reading through many post-op stories on here, those who’ve either had a drain in for 24 hours or had steroids to reduce swelling seem to recover a bit quicker, anecdotally…

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Hi, so here is what I have been told by medics about steroids. After surgery for styloids I was given a post op hospital injection of steroids. I think this is to reduce the swelling that occurs in first 3 days post op. In Uk medics do not give oral steroid meds to take home as they say are concerns about post op infection and delays to wound healing. For patients who are already on steroids before op (as I was in past) medic advised to increase steroid dose before & after surgery as adrenal response will have been suppressed by steroids. If concern is swelling post op then as I said before members will find lymph deep oscillation works to heal wounds/reduce swelling without drugs (vodder.com/physiopod.com for info), but avoid “cosmetic only teams” as is now being used for lyposuction/cosmetic reasons not cancer/post op/more serious medical situations. D

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@Buzz - I completely agree w/ what @Jules said & @PatientD also brought up some good points.

I was incredibly grateful to have a course of Prednisone Rxed post op because of the throat swelling I experienced. I took my Pred dose each morning & by the next morning, my throat would feel like it was swelling closed until the next day’s dose kicked in. What I was feeling may have only been a nerve sensation & not actual swelling to the extent it felt, but it was kind of a scary feeling.

Prednisone can knock the immune system down & can slow the rate of swelling and also slow the rate of healing, but as Jules noted, the course of Pred that’s Rxed is short (10-14 days) & the benefits outweighed the risks for me. My surgery was outpatient, & I felt dopey from the pain meds so I mostly stayed home over the time I was taking it & never worried about getting sick. I can’t say one way or the other if it slowed healing. It took 2 months for my energy to return post op but symptoms started disappearing soon after surgery. I didn’t have VES so was a jump ahead in the healing dept. since my brain didn’t need to get used to a new blood flow volume as well as healing from the styloidectomy.

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Hi Patient D,

I saw Mr Hughes today and he offered me surgery for a resection of my hyoid bone and styloids. But i found he was too quick. Just had a glance at my scan images and offered surgery at Cleveland clinic. No mention was made about any vascular symptoms. I dont have shooting pain in the jaw but problems swallowing, pain in the ears, tinnitus and headsches and balance is bit off too. He didn’t ask many questions. Feel unsure about what to do next.

Regards
Hema

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@Hema , if you click on @PatientD 's avatar you can send her a private message if you want to discuss Mr Hughes with her. I did reply to your other post about some of your concerns.

Just been at my daughters graduation but I will try to reply tmrw. D

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Thanks a lot Debbie.

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Thanks a lot Jules.

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Hi Debbie,

Was the styloid completely removed? Does Mr Hughes do external surgery for a complete removal from the base of the skull? He has offered me a partial removal of the styloids bilaterally and a resectioning of my hyoid bone.

Hi, am really struggling with brain today as not had deep oscillation lymph help for 6 days. Normally go every 3/4 days. Am at clinic tmrw morning, so will reply tmrw, once brain is Less fluid filled/working better. Sorry for delay. Debbie

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so a brief answer to latest question now. Mr Hughes is a very good surgeon and in my own case has been more interested in helping than Mr Axon (not a high bar to meet). He does do external surgery. But his operation method is normally to make long incision halfway down neck in neck crease. this makes recovery harder but lymph deep oscillation post op will help a lot. On skull base removal question - my left styloid was removed to skull base, but Mr Timothy had already cut it at skull base when he did my c1 trim, so maybe this is why, I don’t know. My right styloid was not removed to skull base by Mr Hughes and so I remain symptomatic on right side. This has always been my worst side. After huge efforts (&cost) on my part, including ICP monitoring at QS to support what I am telling them, Mr Hughes has agreed to perform revision surgery on Aug 25 to remove styloid at skull base. This time method is to cut in front of ear (bottom half), made semi circular incision under ear to join at back of prior scar. Mr Axon method of operating prob better but he does not agree to help. so I can tell you more on skull base removal by end August. Discussing need for skull base removal if needed is vital or you may have same post op problems as I do. Hopefully he is learning about our condition and how best to help us. I agree he does not look at scans etc & is very busy (his main practice is head & neck cancer patients), but most consultants just rely on reports & do not look at scans themselves. only major exception is my spinal fusion consultant who spots things reports miss. if you do go to Cleveland insist they do NOT give you overnight fluids bag, it makes neck swelling much worse. fact is our patient group faces very little choice in Uk on who can help us & he is best option I found. Not been prefect but better than no help at all. Good luck. D

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Thanks a lot for your reply. If you dont mind me asking, did you have your right styloid partially removed? who removed it. What is an overnight fluids bag? As I dont have jugular compression I am not sure if I should rush into styloid removal as yet. Just get the hyoid resected maybe. It’s a hard decision to make. I did ask Mr Hughes said removal at skull base is a big surgery. He also said that when he cuts open my throat for the hyoid he can partially cut the styloids too. But I haven’t heard about partial styloidectomy a lot. Is your revision surgery at Cleveland?

Hi@Hema, hope you are able to get a second opinion to reassure you xx

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Hi@PatientD all your posts are so informative thank you so much for taking the time to share when you are also sick and suffering as well as your daughter too, im so sorry you and she are both poorly at the same time that must be incredibly tough to manage. Unfortunately Mr.T won’t see me bc im a patient of Dr.Gilete for my traction&CCF. I was a little disappointed that they wouldn’t even discuss and evaluate me and dismissed without seeing me on basis of being treated by dr.G previously but I think its bc of past issues with other patients so that’s their new policy unfortunately; as I was very keen to hear his interpretation of my symptoms/case. Next stop is online consult with Prof.Matharu at Queens - which im very nervous about as never had much help with neuros except to diagnose complex migraine/ hemiplegic migraine except the neuro in Dr.Olivers team in Barcelona who diagnosed my tethered cord and did jitter tests for myasthenia. Also waiting for follow up appointment with PT Rob Pattinson in Bristol who specialises in TOS. I had MASSIVE improvement in symptoms with my traction/fusion going from 10 years bed bound to now chair bound. But still major suffering, disability and poor quality of life with IIH/ venous outflow type symptoms… thank you so much again for sharing your progress it is so helpful… im so sorry you are having to consider another surgery, I hope you get clear answers from your latest scan, xx.

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I hope that you’re able to get some answers and help from Prof Matharu… :hugs:

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I hope that your revision surgery is successful; so rough that your having to have more surgery… :hugs:

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Thanks Jules! xx

I am sorry to hear that Mr T did not help you & that you remain so unwell

On a positive note Queens Sq did tell me about P Matharu and I do plan to see him post op recovery. They told me he has a 75% success rate within 2 years in helping his headache patients. Two years too long, but any relief is to be welcomed.

As I do not live in Leeds I am now seeing Ann, the instability physio specialist at Wellington Hospital London who has been helping me post fusion.

Take care. D

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Dear@Patient D thank you for replying, and for your encouraging words… I will try to let forum know how app is with prof.M… have heard positive things about Anne… I have just contacted Leeds physio cure as we are in north east so hoping for input and advice from them too! best wishes xx

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Thanks @LivvySheep ill surely go and see Axon soonish.

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