First appointment with Dr Jonathan Hughes

General
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@Warrick dont get me started on the NHS! I can’t hold it in, sorry!!

I’ve had dizziness (actual black outs), facial pain, tunnel vision, trouble focusing, head pressure, hearing loss, visual snow, after images, numbness in my arms, tinnitus, balance issues, derealization for almost 3 years!

I was told over and over ‘it’s just anxiety’! I’ve done 2 years of private psychotherapy, EMDR, hypnotherapy & 4 rounds of Talking Therapy (currently half way through a 20 session intensive CBT course)! None of it has helped and this did not start during a period of stress!

I literally can’t see well enough to drive, I’ve had almost 4 months off work, I can’t even take my kids out or go out on my own because of how bad I feel.

So I paid for an MRI, I had 2 CTs without contrast on a couple of my numerous A&E visits where I couldn’t walk because I was so dizzy!! I found out I had a neck issue and ES only due to a private chiropractic CBCT scan. No CTV despite the fact I was blacking out regularly and housebound!

JH agreed to operate just on my X-ray because he could feel the styloid! To this day I have zero idea whether I have IJV compression (I have all the symptoms), IIH maybe… I don’t even know if I had the worst side out! It was the side that hurt the most. My GP is still treating me like I have health anxiety.

I’m so stressed because I’m so scared I won’t feel better. I’ve already decided if I have issues at the follow up, the other side is coming out! I also have mild c2-3 misalignment which I’ll get adjusted once I know a styloid won’t cause me a stroke in the process.

I’ll keep trying for a CTV, but tbh I have up trying a while ago, it was just making me too crazy!!

Sorry to rant. :joy: Bet you wish you hadn’t said anything!!

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Ps the only meds I got were ibuprofen and paracetamol. I don’t take any medication, after Fluvoxetine seemed to give me visual snow in December (although again who knows of it was that or a coincidence) :woman_facepalming:

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I’ve been very sceptical about the medication too. I was prescribed amitriptyline by A&E after my third visit. I think they didn’t know what else to do to get rid of me to be honest. I think it slightly dulled my headaches down, but I’ve always been suspicious it may have worsened the dizziness and tinnitus! Was sceptical about Apixaban too but I must say im more and more convinced as everytime I stop and my headaches come back within a day of stopping!

So sorry to hear your journey has been so frought with general incompetence by the NHS too!

I like you an very impatient. I want to see results immediately or I start second guessing everything! I’m almost more impatient now than I was waited nng for the surgery!

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@Warrick After all this time, I’m honestly out of patience.

JH didn’t tell me how long the styloid removed was either. I have to apparently wait until my follow up. I didn’t argue, for fear of exposing my apparently madness! I have a bit of a complex now.

He’s an amazing surgeon and I am so grateful, as I honestly don’t know how hopeless I’d feel right now if someone hadn’t listened to me, but I still feel like I don’t know what’s happening to me. I am on an NHS list for Axon and might get a CTV through that. I see myself just going back to JH for the second though (now I have Bupa)! I just want my life back now.

So thankful for this group and all you guys for replying to me!

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@BabzieAM - I cut my pain meds way back starting on day 3 post op & by day 5 I was where you described yourself at day 5 except I didn’t do any housework. I had to spend days 5 & 6 down & out because my pain was so bad from the reduced meds. It took 2 days for the meds to catch up to my pain level & calm it down again. SO FRUSTRATING!

I ran in a 15k race 6 weeks after my first surgery. That was a HUGE mistake as it flared my symptoms terribly, & I ended up walking the last half of the event because my throat felt like it was swelling closed & I couldn’t breathe well. Based on my experience, I recommend you wait on using your spin bike until at least 6 weeks post op unless you can get on it & just idly pedal without getting your heart rate up much.

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@Warrick Do you know if the steri strips dissolve? They were mentioned on my discharge notes, but I just changed the dressing and I can’t see any stitches! Just a lumpy big red line where the incision was. Kind of wishing now I’d not looked! :joy:

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Steri strips I don’t believe dissolve. But if you can see your scar then you don’t have or have already removed them!? They are just like long thin tape / plasters.

They used dissolving stitches / sutures under the surface which I can’t see, but think I can feel one. The steri strips I removed after 14 days.

My scar was not swollen at all when I first removed the steri strips. Then it lumped out and went red in the days after.

I’m currently dealing with a much more hard swelling on surface of the scar, and probably deeper too as my neck feels tight and lumpy when I turn to the side and squash the scar. Major head pressure and dizziness today to go with it. I think it’s probably related to the hardening and swelling within. Or at least I hope thats why!

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@Warrick - definitely have steri strips on the notes, but not there. The nurse put a big dressing on the next day (whilst I was lying down) and managed to get half my neck I there! When she came back she changed it for 2 smaller ones and maybe they pulled out. Anyway, day 7 and just a red line where they cut, a few bruises and red. Looks sore still so covered back up asap!! Must be some stitches but I didn’t look too closely.

Sorry you have discomfort. I’ve also had some horrible intermittent dizziness. I think I underestimated how long the healing might be. My c-sec that opened up took 12 weeks to heal from the inside out… this will be less, but I think 6-8 weeks is probably quite realistic. I know scar tissue can cause a lot of discomfort for a while. Keep rubbing with bio oil and don’t over do it. It will pass. Both my C-sections felt weird sometimes for a year afterwards! It got less over time.

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Wishing you and @Warrick a speedy recovery. As you rightly said, this will pass. I’m dizzy today too. The jaw pain has been so bad that I had to take codiene for two days. Seeing Mr H on Tuesday. Have a restful weekend. x

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@Hema Hope it goes well on Tuesday. :crossed_fingers:

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I am doing loads better the last couple of days. I can chew properly and can open my mouth a lot wider now. The electric shock zap feelings that I was getting under my jaw are getting fewer and less painful.
I have developed first bite syndrome but hopefully that will disappear, in time.
My main issue today is that the muscle right above my scar keeps clenching up. It feels very tight and slightly painful. I am trying to gently massage but I still have one small area of incision that’s not quite closed up so I dont want to risk doing anything that might open it up more. Not sure what to do about this muscle!

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Try some heat or moist heat (a damp washcloth between skin & heat pack). Gel packs that can both be heated & frozen are available & would be a good resource now.

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Thank you, good idea. I did get some of the gel packs to use frozen, early on. Will give it a go!

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@Jacqui I’ve been using frozen gel packs and putting in my neck support (@Warrick ’s advice - thanks)!

I changed the dressing yesterday and it’s been sore ever since. I keep yawning today too and it’s making it hurt more. Having said that, I’ve slept in a reclining chair in the lounge for a week, but am attempting the bed tonight! Hoping my 6yo doesn’t climb in, in the night and kick me! Need normality asap as work Monday and I feel zero better… I can’t take any more time off!

Glad you’re feeling a bit better. I underestimated how long recovery might be… JH was very blasé about recovery and pain. I mean the pain has been really fine, but I feel sore and completely unhealed a week on, in fact new areas of pain keep joining in the party!

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It’s not unusual to have new painful areas as you heal due to all the nerves that post op inflammation is affecting, @BabzieAM. Additionally, nerves can hurt as they heal, too.

If you have a job that would allow you to go back part time initially that would be best. Even better would be if you could work from home if at all possible or pastime at home & part at the office. That compromise has worked well for some of our members.

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I agree that medics are very uninformed about how long post op recovery takes,especially if JVs are compressed.

If you had been a knife attack victim and had throat cut open then I don’t think anyone would suggest recovery inside a week or two.

I hope your recovery continues smoothly. D

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Ouch, yes, I remember the yawning thing. Painful! I ope that you managed to sleep well lying down. You will feel much better very soon!

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@Jacqui the pain much better today, hoping I’ve turned a corner! :crossed_fingers:Crazy disassociation and anxiety though, not helped by having to return to work tomorrow. Hoping to feel more balanced soon! Good to know you’re seeing improvement!! :+1:

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Hope that you can sleep well & that going back to work isn’t too stressful or painful :hugs: :pray:

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Has anyone else had worsening tinnitus? Mines gone INSANE! It was probably my least bothersome symptom pre op and now it’s probably the worst! So loud and continuous, I can’t think. I’m working from home and crying all day as it’s so bad. Wondered if it’s normal to flare up and it goes away! It’s causing earache and nausea. 3 days now (day 11 post op).

@Warrick @Jacqui @Jules @Isaiah_40_31