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?
My Intracranial hypertension included visual disturbances, extreme head pressure, pressure on the optic nerve, sensitivity to light, severe neck pain, dizziness, motion sickness, nausea, cognitive impairment, trouble with words, sensitivity to sound, pustile tinnitus when laying down. General weakness and dystonic storms (seizure type episodes).
While I am still without the main ICH symptoms, now at 6 weeks post op I have gone down hill. Fatigue is very overwhelming although I can’t seem to rest, feels like my body is in a constant stress state. Constant butterflies in my tummy and high body anxiety.
It feels really yucky right now, but I am hoping it’s all part of the healing process and maybe I went back to you many life activities too quickly being a single mum. I do remain so so so grateful for the ease in ICH symptoms through! Definitely a miracle to me. But I am not a functioning human yet.
@Isaiah_40_31 is this over active sympathetic nervous system response something you have heard of post op?
I’m sorry that you’re experiencing this now, like you say it could be because you’ve not been able to rest as much as you needed too, that’s impossible for a single mom Great that there have been some improvements though…
We have had some members who’ve had possible vagus nerve irritation after surgery which can cause those symptoms, and fatigue is common too… I hope that this improves soon, and rest when you can… praying it does
It’s easy to overdo when you start feeling better & that can cause a setback like you’re experiencing. I can’t imagine being a single mom & trying to recover from ES surgery especially a surgery of the magnitude you had. @Jules gave you good information. I will only add that making time for resting as much as possible will help with fatigue & recovery. If you have a friend or family member that could help you with your children several days a week for a couple of weeks, that might go far toward allowing your body some more solid healing time. I’ll also pray for this more difficult period to pass quickly so you begin feeling more significant recovery.
I am laying here today with a tummy shaking with nervousness and wired. It is all consuming and I wish I could just ‘relax’ but my body is so wound up.
This feels unbearable to me, so I hope things settle with rest and time. I do agree I went into life too quickly. I was so excited to not have the ICH!
If anyone has advice or experience with this type of situation post op, please reach out! I would love to hear how you managed. So far my usual meditation practice and audiobook ‘coping’ strategies aren’t working.
With gratitude to all the ES and VES warriors out there
We’ve had some discussions about how cold water is supposed to help, and also humming? Obviously you’ve tried the meditation & presumably intentional breathing, there are some areas to massage which can help if you’ve not tried this, here’s a link:
Your shaking/nervousness/feeling wired definitely sounds like a mis-firing vagus nerve, @Harry. I hope the suggestions in the link @Jules sent will be helpful. It may take doing the “exercises” for several days to a week or more to begin seeing benefit, but if you stick with them, hopefully you’ll begin to notice your body calming down. Have you tried applying ice/heat to your neck, gentle neck massage, or using magnesium gel on your neck to see if those might help?
Hi Harry, My son had anxiety, restlessness and a continual wired state that started 6 months after bilateral styloidectomy and decompression surgery that was having a lot of repercussions on his sleep and his ability to fall asleep of a night time. He was surviving on only a few hours of sleep a night if that…
He really was in a state of " an overactive sympathetic nervous system". My first reaction to these symptoms was that maybe he had started to do too much. He had started to do alot more and he had started carrying his VTT bike up 3 flights of steps and I was worried that he had damaged his vagus nerve.
However if it is vagus nerve damage you won’t be able to change your heart rate if you start breathing very slowly. You will also have gastroparesis and you will quickly feel full after a very small meal. Also you may have orthostatic hyportension (dizziness when standing) or may develop continual hypertension.. … difficulties swallowing…My son had none of these symptoms.
He was ended up being put on a low dose of daridorexant, an orexin receptor antagonist, and a low dose of agomelatine, a M1 and M2 melatonin receptor agonist when going to bed of a night. He had some strange symptoms like a very hot head flush after taking the medication the first couple of nights and some very vivid dreams but his continual wired feeling started to abate and his sleep slowly improved every night and within about 10 days he was feeling a lot better.
So if you also have difficulties falling a sleep and staying a sleep due to your continual wired state and also your symptoms fit with brain driven sympathetic overdrive rather than vagus nerve damage sympathetic overdrive then maybe you should discuss this medication protocol with your doctor.
Thank you so much for sharing this information, @Emerald. It’s very helpful. We tend to blame a lot on the vagus nerve on our forum because it is intimately involved in so many of the body’s functions, but the information you’ve provided has presented another possible cause of symptoms blamed on the vagus nerve. It’s especially helpful because you’ve also given a solution.
@Emerald Thank you so much for your information and sharing your son’s experience. I am so, so grateful to hear your story and read the medication that helped your son
I feel you are right the it’s sympathetic overdrive, as I don’t have trouble swallowing or a hoarse voice that can occur with vagus damage. There is also more to my experience thus far - I did trial agomelatine for 8 nights and it seemed to make my sleep worse - I couldn’t get to sleep. So my GP said to stop it at day 8. I spoke with Dr Rao about my situation today and he is hesitant to add any other ‘anxiety/depression’ medication as it may affect POTS symptoms negatively and he honestly said he doesn’t understand how this happens.
I guess I wanted to reiterate your son’s experience is absolutely where I am at, but for some reason the agomelatine disagreed with me. Now I feel really stuck as I have no other medication options. But I do have the DORA for sleep, so that should help. Thank you @Emerald
The GP has suggested Mirtazapine, but Dr Rao isn’t agreeable to this atm. He said he will converse with a colleague and get back to me. Which he often forgets to do but I will keep my fingers crossed and follow up with reception.
Has anyone with VES had experience with Mirtazapine?
but I will keep my fingers crossed and follow up with reception.