I’m so sorry to hear your post op symptoms are ramped up! I am glad to hear that you had a helpful appointment with your dr however. You take good care and rest up.
1 Like
Hi, so at week 3-4 I decided to venture out & promptly got a bad viral infection with terrible cough & chest congestion. It has been a hellish few days. Given that winter season is approaching now just wanted to warn others to be sure not to follow my example. A big set back to my recovery journey. Hoping it will be over soon and I can resume my recovery. D
1 Like
Sending healing thoughts 
Hopefully your body will get on top of the virus soon.
How were you getting on before the virus btw?
2 Likes
I don’t think it was unreasonable of you to want to venture out into the world, it’s been 4 weeks or so since your surgery. I hope you feel better soon from this viral illness 
- May I quickly ask how much the surgery with the NS in Leeds cost?
- Do you think Mr Hughes would be interested in seeing screenshots of my imaging to see if he thinks it would be worthwhile consulting with him?
Wishing you a speedy recovery.
2 Likes
Poor you, hard to stay shut in all the time though, we’ve all had enough of that! I hope that you feel better soon, sending hugs 
1 Like
Hi
So if you have compressed JVs due to styloid then I think it is well worth seeing Mr Hughes. But try to take solid evidence of the compression with you to the consult. He is very busy & has multiple clinics/secretaries so I found getting him to look at scans before a consult was tricky. Also I’d take list of all Eagles symptoms you have.
As for my Leeds NS I think he is very relaxed about trimming C1 tubicle to help decompress JVs. Although he did cut my styloid on unplanned basis in theatre too (as it was compressing JV) I don’t think that is a procedure he would normally be comfortable doing, but he would look at your compression & take action he thought necessary. I’d have to check back on invoice from Jan 22, but from memory his fee, including one night stay, was c£5-6k, nearer 5 than 6. The C1 tubicle trim was a much easier procedure to recover from for me. He does remote consults if helps.
He did my spinal C1/C2 fusion too, but that’s another topic.
Hope that’s helpful. D
3 Likes
So… before the virus my recovery was making progress but much more slowly than I had expected. Mr Hughes said 1-2 weeks- wildly optimistic for me.
I have now had 4 surgeries, this year- JV left side, spinal fusion, Eagles styloid right side & an unplanned emergency eye surgery, so my system has been through a lot, so not a surprise it’s upset & will take time to settle down. Hoping can go in to next year in better shape & start to put all of this behind me.
Earlier ops suggest it’s several months -2/3- before head adjusts to venous changes after each op.
Trying to stay optimistic for a fuller recovery. D
5 Likes
My daughter graduates from her master next summer. Am determined to be in good enough shape to make it to her Graduation Day and enjoy the day to the full. D
2 Likes
So sorry you’re sick. I’m sure coughing isn’t helping anything. Hoping for a speedy recovery for you, @PatientD.
Thank you. Set me back a full week already. Starting antibiotics now. Will be getting my flu and Covid booster after this warning. Getting cough is terrible for Eagles! D
1 Like
That was very helpful info, so thank you for that. It’s abundantly clear that my C1 is a major contributor to the compression and turning my IJV’s into pancakes on both sides, in neutral. In flexion and extension it’s worsened even more. I think I’ll be getting in contact with Dr X in Leeds very soon.
Did he do one or both sides of your C1? Oh gee whizzicles, I do want to ask another quick question or two 
but i’m not sure you’re probably feeling up to it, so I’ll leave it at that.
How are you doing today?
2 Likes
That’s alot of surgeries, unfortunately, I hope that you can soon get back to healing after this virus!
1 Like
It’s ok, my neurosurgeon did my C1 tubicle trim on both sides, but not at same time. We did not talk about dual surgery option as for me CCI fusion was next step. I found C1 trim quite a minor op compared to Eagles op 4 weeks ago. D
1 Like
Thanks Jules. You are always very kind. D 
2 Likes
1 Like
Thank you for this.
I spoke to the other secretary and was told because I have a CTV this would be a more complex consultation which would be £400 instead of £250. Also I’d need to provide imaging from the past year, my ctv is nearly two years old (GULP). Seems like it would be a pricey start to a consult as another ctv would be required, but perhaps it would be sensible anyway to get an idea of how things look now in comparison.
I wonder if he could recommend anyone on the NHS who trims the C1… Twould be a pipe dream I know!
1 Like
Definitely a pipe dream I reckon, sorry!
Sorry to hear all that. I don’t think any surgeon would agree to operate with a scan that is 2 years old given how things can change.
If your GP would refer you to Queen’s Sq in London, the national neurological hospital, I think they would scan you for free, as part it’s a part of UCLH. But to be honest with you I am still waiting for my initial nHS appointment there, despite GP referral many months ago. So I don’t think that route will not be fast & it depends if you can wait.
Getting GP to refer you to Queens Sq anyway is good idea for future help (but they are still learning).
As usual these days have now lost my train of thought, so will send this & send another reply if anything else useful to add. So tough my brain doesn’t work like it used to. D
3 Likes
I know mr T used to work in NHS at Leeds hospital. Worth asking if scan there is an option on NHS but tbh I doubt it. D
1 Like