Surgery with Mr Hughes London this Friday

There are two ways you can upload your images, @PatientD. One is to click on the underlined up arrow in the text box when you reply to this post. That will take you to a page where you can upload images from your computer. If that doesn’t work, then try dragging & dropping the image(s) from your computer desk top into the text box. If neither of those work, please let me know.

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Thanks Isaac. Will try that soon. D

Trying to upload picture of neck scar post VES op with Mr hughes in case helpful to others. D

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Left styloid & compressed JV image before C1 trimmed & left styloid cut by Neurosurgeon jan 22. I have tried to show image of wound too so you can see how much smaller it was. Much easier recovery than method ENT surgeons use.

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Sorry uploaded ICP monitor image in error above also. Not sure if can remove that now? Not a concern for me, just don’t want to clog site with junk. D

Removed that for you! The scar looks good…Useful to know about another doctor who’ll trim the C1 process, did he actually remove the styloid, or cut it & leave it in?
Hope you’re recovering well, it’s good of you to be posting all this info while you’re recuperating! :hugs:

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Thanks Jules. Neurosurgeon just cut styloid but left it in. Plan to chat to Mr Hughes about that in Oct follow up consult. D

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I took care of deleting the pic for you. :blush:

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The first surgery was up higher because the surgeon was dealing w/ C-1 & at least part of the styloid(?). If he didn’t remove the whole styloid to the skull base as Mr. Hughes did, that could explain the easier recovery. Getting back to the skull base involves a more invasive procedure where muscles get dissected away from bone, & nerves & other soft tissues get moved around thus the longer & potentially more painful recovery.

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Hi, yes Neuro cut the styloid at skull base but did not remove styloid. He said it would just stay inside & be ok. Trimming C1/cutting styloid to skull base does seem to have opened up JV but I await scans to show JVs are now more open. Increased blood flow tells me they are. D

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@PatientD - Got it. It will be interesting to see if you end up w/ any irritated nerves caused by the “loose” styloid remaining in your neck. I hope that doesn’t happen & it’s good to know you’re noticing good results from the surgeries.

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Hi, so end of week one. It’s been tough. Have taken it very carefully but now build up of pressure inside skull is bad. Have decided to change approach in week 2 and start going for more longer walks to help system adapt/settle. I know walking forces my CSF fluid & blood in skull to move, it’s just how our bodies work. First walk tonight was bit crazy, felt like was on an aeroplane with pressure system being abnormal. But my Viatom ring showed pulse & oxygen stayed within acceptable ranges so I will keep going and hope things normalise with more use. It reminds me of weeks after my spinal fusion but bit less extreme. Such a strange condition VES. I do feel that I look like a crime victim with slashed neck but will find peaceful routes. Hoping it helps fix me. D

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Taking slow walks for as long as your body tolerates is a great way to stimulate circulation which, of course, helps healing. Be sure to head for home when your head/neck tell you they’ve had enough. Better to keep it short right now & heal faster than to push too hard & take longer to heal. You have a good attitude about this. That will help a lot.!

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Thinking of you…the heat probably hasn’t helped you either!

Thanks Isaac. Happy to report that walking is helping. My pulse actually fell overall as I walked slowly today, which tells me it helped move trapped fluid. Will be sure not to overdo it. Only got 3 hrs sleep last 2 nights due to head pressure so need to nap! D

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Still feels like i am on an aeroplane changing altitude when I walk as pressure system is struggling. But I have been here before after spinal fusion so know the worst should pass with time and healing :slightly_smiling_face:

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Patience is key in recovering from any surgery. I’m glad you’ve experienced that so know what you need to do now. I hope that head pressure settles down soon. Great t hear your pulse is lower when you walk. That’s a great sign!

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Good that you’re prepared & not thrown by this, keep taking care of yourself :hugs:

Hi, so I had (unwisely) stopped steroids a few days ago. Inflammation in head ramped up rapidly. I am restarting steroids now.

Saw mr Hughes on Monday & got useful post op advice. Will try & post that soon once feeling bit better. D

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Thinking of you, hope the steroids start helping soon, no rush to post the info, you take care of yourself :hugs: