Thank you. Happy Thanksgiving to US members. D
Hi, now day 10 post op. Scar had healed enough at surface today for lymph expert to use hivamat200 deep ossilation machine over the scar area. Itâs made a huge difference today. Hoping am starting to see some improvement now after a tough week one post op. Told that cosmetic surgery patients (liposuction) get told to book post op lymph work. But other surgeries here in uk donât advise this. Seems bit crazy to me. Anyway been a good day fir progress. D
Glad that things are improving for you!
Addienbrooks NHS called today after waiting many months after my GP referral. i am hoping that I will finally get to see Nick Higgins there for diagnostic help to find out if my JVs have opened post surgery, if abnormal fluid trapped in skull has lessened and to benefit from his renowned expertise in Neuro radiology. Itâs a year since I last saw Mr Axon and he asked Mr Higgins to see me. I will now have to wait again for Nick Higgins NHS appointment. If it happens I will post an update. D
Crazy waits now, glad that you were able to get surgery privately at least!
Asked my GP in telephone consult today to let me try Plavir/anti coagulation meds to see if help. As usual he needs specialist to say ok. But that costs me ÂŁ200 to even ask. Even when asked medics not helpful. Really feels a solo battle without meaningful medical support most days, maybe Iâll try to buy it on web myself
So hard, youâve spent so much already! Take care where you get it from, but Iâm sure youâll be thorough
Hi, yesterday had bad fluid swelling at base of neck in thoracic outlet area. It got better after lay down & JVs opened. Did any one else have this and if so any advice/tips? I am still doing lymph drainage to try & help post op swelling. It helps but slow road to recovery. Ty. D
You might not want to, but others on here have had steroids to help with swelling, the lymph massage you do sounds great, icing might help again if youâve stopped thatâŚsending you a hug
Had greater occipital nerve block today to try & manage burning pain at back of head. Injections painful as pain sensitivity high but if works should last 2 months. In nHS system for this but no appointment yet. Sharing in case others could benefit by reducing occipital nerve pain at back of head. D
At week 3-4 now after styloid op on left side but abnormal fluid in head still an issue. I do wonder if this will ever get better & allow me to have some meaningful quality of life again. Head was so bad last 48hrs I spent long time tonight sat & using Helios NIR setting on shoulders & upper back & think that has helped reduce trapped blood. Not sure if itâs my VES surgery, spinal fusion in May, or both, but this is one tough journey. But if I look back a year, before my surgeries, that felt unsurvivable. So itâs a positive trend overall so will try & keep going. Having both spinal blood system & IJV drainage systems compromised is tough, but I can see some other members are on the same journey. Just be nice to have some more medical help & guidance on this journey. D
Iâm sorry your recovery isnât progressing as you (& we) would hope @PatientD. This is a S-L-O-W surgery from which to recover but you make a good point that this major surgery follows on the heels of your spinal fusion surgery which Iâm sure your body is still adjusting to as well. I think youâre doing an amazing job of keeping your head up & having a good & hopeful attitude about your recovery. Itâs just that on the bad days, itâs really hard to stay positive. I am still expecting that you will improve with time itâs just that progress is feeling very slow at the moment.
I really appreciate that you continue to offer help, advice & useful tips to members on our forum while youâre still having a tough go of it. Thank you! That speaks highly of your internal strength.
Fully agree with @Isaiah_40_31, youâre doing a great job and just keep taking it one day at a time, give your body the months it needs to recover and readjust after a huge year
Thank you. I donât regret fusion or styloid ops, I had no choice as so ill, but recovery is clearly lengthy as you say. Medic last week told me spinal fusion is 18 months recovery, so another 11months to go! D
What a year youâve had, like @Isaiah_40_31 says, that you can still be positive & give advice on here is wonderfulâŚconsider yourself hugged
So nHS sent me invite for a Ct scan (with contrast?) 23/12 at UCLH to find out if my JVs are more open after operations. Maybe a bit early for left side but 4 months now post op on right side & 7 months since C1/c2 fusion & C1 trimming. Hoping to get some objective diagnostic outcome from this. Have booked consult 10/1 to discuss results & other questions. Hoping this is start of NHS providing some meaningful help at last. My NHS referral was at start of 2022, so almost a year. D
Thank you for sharing your timeline @PatientD. That will be helpful for our UK members though I know some of your surgeries & appts were done via private pay which likely expedited the process to some degree. Really good news that the NHS reached out to you & offered a CT appointment in the relatively near future.
I hope the results of your scan in a week is what youâre hoping for as seeing your IJVs more open will give you a mental boost to help w/ the healing process.
Thank you. The NHS has given me no help up to now. I have had to pay for my C1 trims, spinal fusion, styloidectomy x2 and eye surgeries. Before that my Atlas Orthagonal & other treatments were self- funded. I have not added it up yet but am certain it must be close to ÂŁ100,000. If you have a health condition NHS do not recognise they do not help you. This was made clear to me when eye problems (caused by VES I believe) got NHS appointment within few months. Sadly as I has faced left eye blindness NHS help came too late even for my eyes. How you can be so ill & get no help- I have no words. If itâs cancer or known issue they help. Itâs not good. D
Such a sad series of events for you. There are certainly upsides & downsides to socialized medicine. Unfortunately youâr experienced more of the downsides.
So rotten for you to have had to wait or otherwise find such a huge sum of money. I hope that the new year brings better health for you