It’s good to read your optimism, @PatientD. I’m glad you felt well enough to take a trip to the ocean & I hope your time there was healing. I hope & pray for your full recovery.
Good you were able to get away for a bit, and hopefully could enjoy the beautiful weather! Take care
Thanks Jules. Hot weather made it tricky (not good for VES) but trip was good for spirit. Doing things you did before you got Ill can provide useful insights. Overall I came away,at this early stage, feeling optimistic that my latest surgery has helped. D🙂
Thank you for your response, @PatientD . I sincerely hope the op has indeed helped you and the first bite syndrome will settle down sooner rather than later! Crossing my fingers and toes for you
Thank you. Take care. D
I know this has probably been asked before but how exactly does ES cause such terrible fatigue? Is it simply the disturbed sleep pattern or the body trying to deal with inflammation? Yes I sleep very poorly but this fatigue is so physical that I have to rest - particularly in the afternoons. Yet I don’t fall asleep. It’s like a knackered old battery that does not keep its charge!
Just over a month till I see Mr Hughes . Happy Sunday all x
Extreme fatigue seems to be a symptom many members have. I think your suggestions of lack of good sleep & body dealing w/ inflammation are part of the puzzle but also for those w/ vascular compression, especially IJV, the extra pressure in the brain & lack of good oxygen flow into & out of the brain also contributes. Fatigue can also be the psychological result of dealing w/ constant pain as that affects our ability to enjoy our lives & wears us down.
I’m really happy your appt. w/ Mr. Hughes is finally near! I will pray for you to stay well & for the days to seem to pass quickly until then. I’m also praying that he will be able to help you & give relief from the terrible symptoms you have.
Thank you for your kind wishes @Isaiah_40_31! Xx
I wonder too with the fatigue if it might be vagus nerve irritation; hearth rate and blood pressure can be affected which might play a part in fatigue? On top of the other potential reasons that you & @Isaiah_40_31 mention…
Hoping Mr Hughes can help you
thank you @Jules x
Hi, glad you may get Mr H help soon. On long journey and ops I have learnt that as blood & lymph fluid builds up in head my oxy levels will drop, my pulse rate will go up & I will feel sleepy. As the trapped fluid decreases after decompression of JVs post op & initial recovery time, the trapped fluid will decrease & you will feel less sleepy. Once JVs are decompressed sitting reclined or supine at angle that works for you will help JVs open, drain fluid from head & reduce fatigue. Agree with other reasons offered. Take care. D
Good afternoon @Jules - less than 2 weeks to go and am feeling rotten from the shoulders up . I just wondered, reading some old posts from Julia - in the UK, was trying to get surgery with mr Hughes, hopefully on the NHS? Can’t see how she got on, waiting time, recovery, obstacles, all resolved? Hopefully you may know?
Here’s a link to some of her posts, she speaks very highly of Mr Hughes:
UK - Dr Jonathan Hughes - anyone been treated by him for C1 resection - Symptoms and Treatments / Doctor Information - Living with Eagle
Review of UK Surgeon - Symptoms and Treatments - Living with Eagle
You could try sending her a PM if you’ve not already done that although as it was a while ago so she might not reply…
I’m sure the time’s probably dragging by for you, but hang in there
I did get surgery with Dr Hughes in London l. He had offered to do it on the NHS but I couldn’t wait because of terrible artery complications. I opted for private at The London Clinic for a resection of styloid process and at the same time he said my hyoid was digging into my throat so he cut the connection between the two. It was still a long road to recovery, with a lot of drugs to try and calm to neuralgia down but 4 years later I love life to the full and very rarely get niggly symptoms. He was an excellent, empathetic and highly experienced surgeon and most importantly he agreed to save my life. What more can I say about the chap!? I hope I never have to see him again
@Julia - Thank you for dropping by & giving an update. How happy I am to hear you’ve had such great results from your surgery w/ Mr. Hughes. Recovery can feel like it’s taking forever & can get discouraging but your timeline is a very helpful encouragement for those in the thick of the healing process. I hope you continue on as you are now for the rest of your life.
So pleased that you’re feeling so much better, and thank you for popping back
Hi @Jules and all
Quick update and feeling very poorly: saw Mr Hughes end of October and before diagnosing ES he ordered Ct with contrast (which NHS has refused) plus top of head to top of chest MRI as he was not happy with the continuing night sweats, fevers and stiff neck plus headaches which are now 24/7.
I had these yesterday locally - hugely expensive but I need answers.
I also had paid for private FBC, my WCC is low, second time in 4 mths. GP unconcerned but agreed to repeat BT.
I’m fed up with people trying to imply that headaches and stiff neck due to stress, I know my body, I’ve been hanging around in it long enough to know that I don’t feel right!
I’ll update when I know, kind wishes to all, particularly those that are suffering
I’m glad that things are moving a bit, even if you’re paying for it yourself…so sorry that you’re feeling so rough & being fobbed off by some doctors, sending you hugs
Sounds absolutely miserable… I’m so very sorry. Did you get a copy of the scan on disc? If so, can you upload some images from the CT? (Recognize how difficult everything is when feeling lousy) …
Hi @Leah - I’ve asked for copies of scans, have nothing yet as scans were yesterday and I doubt they’ve even been looked at yet. My BP is labile and temp varies from 34.6 to 38.5. Every night I hope to not wake up the next morning.