I wanted to check in and let you know I did the surgery with Prof Elliot and Dr Rao in Sydney. Two weeks and three days post op and I have been very lucky with my recovery so far. Since waking from the surgery all symptoms of intracranial hypertension are GONE! Never to be felt again. It feels like a miracle. At day to three my throat started to really swell up and I was unable to swallow - I was given steroids which helped within four hours and I was able to swallow again.
After all the deliberation about surgery I am so pleased to let you know I am absolutely delighted to have a positive outcome. I know it’s early days and things will ebb and flow and well, there is so much that is unknown about this condition. But to be able to see the world again without intracranial hypertension is such a huge blessing.
I felt very confident with Prof Elliot and Dr Rao, and I have the greatest respect for Prof Elliot as he is really trying his best to learn more about this condition and also how it relates to EDS. He isn’t in it for the money, he is an honourable man.
There are lots more details I could give you, but wanted to share the most positive ones!
Thank you fellow warriors for your support.
PS my main issue atm is fatigue. I am napping so much and sleeping so heavily at night! Must be a sign of healing. AND I have my appetite back! Eating so much, which after losing so much weight from being so ill, is a great sign my body is coming back on line.
That’s wonderful news, I’m so pleased that you’ve seen improvements so soon! Like you say, it can come and go a bit, so be prepared for that, and take care. Praying all goes smoothly for you now
Thank you @Jules . You and @Isaiah_40_31 were such stable and supportive people during my confusion around surgery. I am really grateful.
Dr Rao ended up taking quite a decent amount of C1 to get the jugular to open up. He was open to discussing my concern and Prof Elliot had to remove what he called ‘sticky fascia’ that was contributing to the compression and pushing the jugular against the C1. I will discuss with Prof Elliot in six months if I need the other side done. But for now enjoying the moment!
@Harry - YIPPEE!! I’m so glad you’re doing so well this soon after your surgery! What a difference proper blood flow out of your brain can make!
I appreciate the information you’ve given about Prof. Elliot. Good to know there are still doctors out there who “aren’t in it for the money”. I hope his research & the surgeries he does help him find significant answers about the relationship between ES/EDS/vascular compression syndromes.
Fatigue is your body’s way of getting you to “lay low” for a while so healing can get a good start. I was tired & dragging for about 2 months after my first surgery, then one day, I woke up & the fatigue was gone! It was odd how that happened, but I was happy for it!
In Dr Aghayev’s talk about C1 shave, he says that quite a large amount of the C1 process can be safely removed without any issues, so good your doctors were a bit more ‘aggressive’ with removing enough to decompress the IJV. Don’t like the sound of sticky fascia, good that’s been cleaned up too?!
I’m on here intermittently, but as a fellow sufferer of IH, I’m SO pleased for you!! What a tremendous relief, literally. I’m scheduled for Oct. 5th with Drs. Costantino and Tobias and I’m both terrified and excited. Wishing you very well throughout your recovery.
@tkk - Thx for sharing your surgery date. I’ll put it on my calendar so I can pray for you that day. A long time ago, one of our members coined the word “nercited” (nervous/excited) about how she was feeling about her upcoming surgery. I guess your word would be “tercited”. Either one is good to describe the apprehension of the unknowns of an impending surgery & its outcome. You’ll be in most excellent surgical hands with Drs. C & T. I hope & expect for a good outcome for you!
Hi Harry so happy to hear you had a positive outcome. Do you mind to share what was your main symptom/s ? And what treatments have you tried for IIH before this?
