First appointment with Dr Jonathan Hughes

@Warrick How was the follow up? Are you seeing any improvement from the surgery?

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Hi,

Had my follow up yesterday. All ok. He looked at my scar and said the infection has cleared up well. So no longer taking antibiotics. I had it swell up at the bottom and go very red. It’s still a bit lumpy but not too bad.

He said it was usual to take 6weeks to 3 months to see improvement and that he would want to wait 6 months and see benefits from the first before considering the second surgery.

He did confirm he believes he removed 3cm not 2, and that I was quite tricky anatomically to reach the top. But he said he could see the skull base so believes he got quote close to the top. He seems confident I will notice benefits eventually!

I’m actually feeling pretty rubbish this week. Not sure if the antibiotics made me worse, or just increased swelling from an infection or what, but feels like I’ve gone backwards quite a bit. I am thinking I will start antiinflammatorys again to see if it calms it down at all!

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Sorry you’re still not feeling great @Warrick

Wow 6 months though! I had a consultation on the phone with him recently and he said 4-6 weeks minimum. I’ve already asked to book in the second side. I think my issues are probably different though. I think my other one is close to 5cm and I’ve been emailing a lot, I reckon he might want to just do it to get me off his list! :joy:

I did a Body Balance class at 4 weeks and my neck is hurting again. There’s definitely healing still going on inside. It was bad enough to see a GP this morning, as I had a vein looking thing sticking out and it was sore. I was panicking, but apparently muscle.

It all seems to take a long time. :frowning: Feeing still as crap as before, tinnitus, derealization, visual issues… the only thing gone is the jaw pain and some of the neck pain. That went very quickly. Can’t enjoy it feeling this messed up still though. I can hear the blood rushing around in my ears.

I see a Neurologist next week, as my neurological issues are just too bad. I just want the other styloid out and to get on with it. I can’t wait 6 months. My follow up is 22nd. I’ll go prepared!

Hope you start to see improvements soon. Do you have that NHS scan still to come?

@Warwick & @BabzieAM I’m so sorry that you’re both feeling rough, I hope that you get over the infection @Warrick & start to improve. @BabzieAM have been thinking of you, I couldn’t remember when your appointment was with the Neuro, I was hoping it was soon. Hugs to you both & prayers for healing :hugs: :pray:

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@warrick @Jacqui How are you both doing? Just booked in the other side!

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Well Done. was it difficult to convince him to operate on the second side? when you having it done?

Ive been very up and down unfortunately. I have a few good days, then some worse days (slightly worse than pre surgery). not really sure whats going on! my necks feeling a little bit more swollen on the inside, so hopefully thats why ive had worse days. hoping it will clear up soon, and its not permanent scar tissue causing worsened compression.

im still keen to get the second side operated on, as it appears some people only find improvement after both sides are done. really depends on blood flow dynamics and dominant sides etc etc i suppose.

I have a first Apt with Neurology in Devon tommorow, so hoping a fresh NHS perspective may help. im going to go in quite confident and show them my scans and basically tell them whats wrong with me. Im going to be asking for a follow up CTV to assess post surgical change, and also for evaluation of CSF leak, as it appears quite common for a CSF leak to cause the big ups and downs i am currently having.

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@warrick I’m so sorry you’re having such a bad time!

I saw a Neurologist last week at the Cleveland Clinic, as I have 24/7 derealization, tunnel vision and light sensitivity. I am waiting for results of an EEG & VEP. He’s referred me to a Neuro Opthamologist for further testing on how my brain and eyes are communicating. The pain and tinnitus have improved through. I didn’t ever get the CTV scan, so I still have no idea if I have compression of not! Decided I should get the other side done, as it may help. I’m so desperate!

I do have some discomfort on the other side and get pulsate tinnitus when I work out only on that side. He was easy to convince! I did some ego boosting with commending him on his neat incision, put emphasis on the issues on the other side and how please I was with the first surgery. Booked 30/8.

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I am happy for you that you got the other side booked in, I know you were really desperate.
I am doing okay - still got tightness on the right side and now have some new pain where I think the styloid was probably attached. Not sure why but I did dramatically face plant last week, fell full length right onto my front and bashed my chin. So I guess that may have stirred something up!
Still got numbness, how about you guys?

wow thats nice and soon, i’d be looking forward to another stay and some decent food!

Hope the second operation improves things even more, i will be very interested to find out whether you get more relief after the second!

im a bit stuck as i havnt realised any real benefit yet, so Hughes doesnt want to put me through a second surgery until ive seen improvement. he suggested 6 months so was talking january 25, or hopefully sooner if i suddenly start feeling improvement.

I want the second CTV to see if it shows change on the right side. If it shows improved vein size, i will be confused as to why i havnt felt improvement though, and if it shows no change in vein size, i guess i will have to wait further to see if it eventually opens up, or if the compression hasnt been properly removed by the surgery.

@Jacqui @Warrick My other is a big chunky 4.5-5cm one, so I feel it’s worth removing anyway. I honestly don’t know if it’ll help resolve my on going neurological issues, but we will see! He did have 9/8 available (maybe a cancellation), but we are annoyingly in Devon then. I just want it done and my life back.

Sorry you face planted Jacqui!! I did a Body Balance class at 4 weeks and the stretching resulted in horrible neck pulling! At 6 weeks I started Body Combat and spinning, which now seem to be fine. I’m a bit nervous to lift any weights yet though, as I’m still not sure why I had black outs and whether I could still have one! It would really help to know what was going on… it’s not that easy though it seems!

Hope you both get answers/some more improvement soon!

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@BabzieAM , it does sound sensible to not do weights yet…I’m glad that you’re getting testing done & hope that it shows what’s going on, good you have a surgery date too.
@Warrick , so sorry that you’re not seeing improvements, I hope you’re able to get a CTV done & that they do listen to you; let us know how you get on?
@Jacqui - I’m sure that fall hasn’t helped; I’m sure @Isaiah_40_31 will chip in about that as she had a cycling accident after 1st surgery which didn’t help .
Hugs to all 3 of you :hugs: :hugs: :hugs:

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Thanks Jules, I think I remember Isaiah mentioning that. I am sure it will calm down again with time! I want to look into physiotherapy next to get everything as well supported as it can be, given that I am now missing some ligament and muscle support!!

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@Jacqui I started physio last week for my neck misalignment and weak neck muscles. She massaged my scar area so hard, but everything was good after… really recommend it. That and lots of yoga/pilates.

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That sounds very useful! I am a bit scared of not finding the right sort of physio, and them making things worse. Especially on the left side where my styloid remains. I am going to speak to Mr Hughes about it when I have my follow up appointment.

@Jacqui Yes probably best to ask. I just went straight in, but the lady I’m seeing has a 30 years experience so I put my trust in her. I did ask today if I could exercise, which he said was fine (good as I’ve been spinning and doing body combat for over a week)! My physio is only doing massage and stretching for the first couple of session, so nothing major right away. Definitely find someone with decent experience.

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I’m very sorry for your fall, @Jacqui! As Jules said, it may take some time for the jostled tissues in your neck to recover but they should get back to where they were pre-fall before too long. My accident was a week before my second surgery date so it further stirred up already bad symptoms which was no good. I hope that hasn’t happened to you.

@BabzieAM - Good job w/ the exercise & PT & getting your next surgery set up. I also started exercising pretty vigorously not long after my first surgery but it was a bit too soon for me as I mentioned. I’m 10 yrs older now & my body is slowing down in general which is disappointing, but that’s how nature rolls, unfortunately.

@Warrick, Some people really don’t get good symptoms relief until both styloids are removed. I was sort of in that category in that my left styloid was more symptomatic than the right, but the right was removed first because it was thicker & the angle was worse. My left side symptoms took a break for the first 2-4 weeks after surgery, probably due to prednisone & Rx pain meds, but once I was clear of those, it came back & was worse. When that nasty bugger was removed, life was a happier place for me.

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