I set out here some of the things (not drugs) I have found can help in case any of them help you. The brain does get very stressed with ves, especially once standing for me.
NuCalm - For sleep - NuCalm Deep Sleep with biosignal processing disc to go to sleep or stay asleep. Using rescue on app will put brain in theta mode for healing & calm vagus nerve daytime. I leave disc on all day as gaba it contains helps calm the Nervous system. It’s available by monthly subscription. As clinical trial participant I have a few free annual memberships can gift if helps. If brain upset it may still wake you but it might increase your time asleep.
Alphastim is fDA approved for treating anxiety & puts brain in alpha mode, it just clips on your ears.
Headspace/mindfulness can help teach us to quieten mind. I decided long ago that even if I was dying being in a panic was unlikely to help me.
I use Oura ring mostly to see my sleep stats. I make notes on it during day to help identify triggers to manage myself better. But some will find data stressful. I prefer to work from hard data/facts.
Use Viatom ring for pulse & desats data. Ditto some May find data stresses them.
For me using oxygen concentrator when desats bad/pulse rate high can help improve oxy/lower pulse rate & help me sleep longer.
Hivamat 200 deep oscillation machine can reduce head & neck swelling & lessen pressure to provide some relief. Can see Vodder practitioner or hire/buy machine to self treat. It can be used on skull above hairline.
I am so sorry you are suffering so badly still. I have had most of the problems you describe & fear am losing my right eye vision now but medics can’t figure out why.
One more idea. I’m also not a good sleeper & it was suggested that I have my cortisol levels tested over 24 hrs (it’s a saliva test). The test found that my cortisol levels are high at night during sleep when they should be low & low during the day when they should be high. My functional med. doc put me on an OTC product called Cortisol Reducer which I take at bedtime along w/ liquid melatonin. The combination has been very helpful with deeper sleep so even if I don’t sleep for more than 5-6 hrs., I still generally feel rested when I wake up. I also wake up sometimes during the night w/ anxiety, but when taking the Cortisol Reducer, I’m able to get back to sleep more quickly.
On the hearing loss front, I’m in the same position as you are, @KoolDude, except I only have hearing loss in one ear. I asked my ENT about getting a hearing aid, but after testing, he told me a hearing aid won’t help because my problem, like yours, is that words sound garbled. He said a hearing aid would only magnify the garbled words not clarify them. He then told me I’m a candidate for a cochlear implant. Even though they can restore hearing up to 85%, I’m hesitant to consider getting one because it can take 6-12 mos for the brain to adjust to the new way sounds come into the ear/brain. I’m not sure I want to cause my brain more confusion than it already has.
Hi @Isaiah_40_31 thank you for the advice here, I am in the same boat but mine is bilateral so I do not think hearing aid will help as is the case with you. There are some studies that are pointing to regaining some hearing after reducing the IIH but mainly on the lower frequencies. I was hoping for that when I went to this surgery.
There are also an increasing number of studies that have found IJV compression is responsible for hearing loss. I recently watched a video of a man who had ES (presumably w/ IJV compression) who had complete unilateral hearing loss for 20 yrs. When he awoke from his styloidectomy on the same side as his deaf ear, he could hear. There’s no discussion about how acute his returned hearing was, but it gave me hope that maybe I can get mine restored. As you know, my ENT was very dismissive about IJV compression’s relationship to hearing loss, so I, like many of you here, will have to shop around till I find someone who’s willing to at least discuss the idea.
My ENT gave me a booklet for the particular cochlear implant device he uses for his deaf patients. It’s made in Austria, I think, & sounds very cutting edge. I can send you some information if you’re interested.
I agree with you ENT doctors look for other causes such as inflammation or genetic but 50% of IJVS patients suffer from some kind of hearing loss in their lifetime according to one study I read. The mechanism of inducing hearing loss is not well understood but is linked to IIH which can impact the vestibular system. The good thing is, hearing has improved in 5 people after CSF was normalized. See the study below.
Since IIH goes hand in hand w/ IJV compression which is implicated in hearing loss as well, it makes sense that normalizing IIH could also help hearing loss recover. I’ll read the article ASAP.
I hope/pray if you do have a CSF leak that you’re able to see a doctor who will dig into trying to find it.
@KoolDude I’m afraid I am very late offering my one little nugget of advice, but wanted to share it in any event. I sincerely hope that your sleep is getting a little bit better and your system starting to feel a little bit safer. I have had severe insomnia for almost 30 years, with sleeping pills having been the only thing to help me sleep, until a couple of years ago when I weened myself off since I’m on so many other medications now. When I had an event in 2019 and my system went into the same version of fight flight that yours is currently in, even a triple dose sleeping pill, a level that would normally never be offered to a woman let alone one is slight his I, did nothing but at most put me to sleep for one or two hours. Then I would be wide awake with my mind buzzing. I share this not to talk about me, but to echo the very real impacts that events/surgeries/etc can have on our systems. My one little nugget which is not a solution but at least can help a little bit is audio books. I know you have bilateral hearing loss while mine is only unilateral, so I’m not sure if this would work for you. But for me I will play a book using a super soft silicone earbud with the speed slightly slowed down (both to help with my comprehension and with the calming impact), and listen and focus on it quietly. It has to be a book that I’m already far enough in that I want to know what happens next, otherwise intense thoughts that really want to get through will get through. And I still may find myself waking up very shortly after I fell asleep, but then I go back to my book. Some nights when it’s bad I just end up listening to the book for most of the night. But it’s better than the silly thoughts and the feelings that those can give.
I’m so sorry that you ended up having to have that double surgery. That certainly can’t have helped. I do wish for you more and more moments of calm and the lessoned pain as time progresses. My heart goes out to you as I read through your story and efforts.
@KoolDude - as I was reading @akc’s post a few minutes ago, I had sudden recollection of when my father had quadruple heart bypass surgery & was under anesthesia for an extended period of time. For a month or more after surgery he slept restlessly & had terrible anxiety & nightmares when he tried to sleep. He was a doctor by profession & learned from this that, for some patients, those symptoms are the after effects of anesthesia. What you’re going through could be the result of having general anesthesia in back to back surgeries. If I’m right, your sleep situation will resolve in 4-6 weeks after surgery without you needing to do anything special. It’s just enduring the lack of sleep for that period of time that will be torturous.
I have finally gone through CTV to assess whether the surgery of C1 shaving worked yesterday and met with my vascular doctor after the CTV. The C1 shaving appears to have increased the diameter of my left IJV around C1 but my left IJV appears to be strangled by the Occipital artery and digastric muscle and shows stenosis just below the C1. My doctor and I discussed the possibilities of doing ballooning (venous angioplasty) and he agreed to do it sometime in march. He is hoping to stent it if I feel any relief from the ballooning which indicates that this residual stenosis might be the culprit. Frankly, I prefer surgery over stent with all its complications but I am willing to give the ballooning a try. I wish I would have gone to Dr. Constantino and Dr. Lo as my case is bit similar to that of @Barrootz who had his occipital artery & digastric muscle compressing his IJV. Dr. C and Lo have perfected their procedure not only to shave C1 and remove Styloid but they remove or relocate any thing they deem to be compressing the jugular vein i.e Fascia, Nerves, Muscles, Arteries…etc. Dr. Timothy has done a good job of slightly shaving my C1 with minimum incision but he could not see the whole IJV from the Jugular Foramen to C3 since his is technique is minimum invasive. Perfect for folks who have only C1 compressing their IJV.
My symptoms largely remain. Visual after images, Halos around lights, ghosting, tinnitus and hearing loss with ear fullness. Brain fog, Facial cheek/jaw pressure/tugging sensations, insomnia (although improving I still wake up multiple times at night and it is hard to go back to sleep).
Listed below are image comparisons of Pre & Post operation. All the left images are from 2023-Jan-06 CTV prior to the C1 shaving in Oct 2023. The images on the right are from yesterday’s CTV 2024 - Jan - 12. Red arrow points to left IJV, Blue arrow to left C1, yellow to digastric muscle and cyan arrow points to occipital artery (hard to see but the 3D shows it better). You can the increased diameter at C1 level and the vein collapse just below C1.
3D Comparison of my images (Left = Pre-Op 2023 CTV, Right = Post-Op 2024 CTV) - Cyan arrow points to Occipital Artery, Yellow arrow points to Digastric muscle and Red arrow point to left IJV. You can see the Occipital artery still choking my left IJV which is pushed by Digastric muscle
Oh @KoolDude, I’m really glad you’ve gotten an answer for what’s likely going on but am SO SORRY that you still have compression after 2 surgeries. It does look like Mr. Timothy did a really nice job w/ the C-1 shave as your transverse process is still mostly intact but enough is gone to allow the IJV to expand. It’s terrible that the occipital artery’s course just happens to run tightly across your IJV, & how dare that digastric muscle push from the other side! Some doctors are cutting or removing a section of the digastric now in vascular cases to help with decompression, but I expect you already know that.
Is there any way you can come back to the US & have Drs. Costantino/Lo do the needed decompression if the ballooning helps? I expect the cost is what would be prohibitive for you.
I think this would have been the right choice but I am afraid cost & 2 surgeries on that side might be an issue for me.
Yeah Dr. Timothy is extremely careful not to injure the Vertebral Artery since that can cause death or major paralysis that is the reason he does not drill too much. He really does not touch the other structures I did tell him about the digastric muscle but I do not think he even sees it as the incision is so small and centered around C1 transverse process.
The irony here is I did not have major headaches or migraines throughout my ordeal with IJVS. I only had head temple pressure along with vision and hearing symptoms with facial pressure.
I’d guess muscle relaxers are something worth trying under supervision of a doctor, as they come with their own risks (decreased ability to hold bladder/bowels, drop in blood pressure etc.)
Another option might be to try Diclofenac powder (I think in Canada the brand name is Cambia, Rx). It’s a migraine medication but some people report that it helps with muscle tension.
Wow, he did a really good job but like everyone is saying, really sucks that there’s stenosis further down. I’m sorry.
I know stents are a last resort but I think it might be something to consider in your situation being that your residual compression is not at the c1 level, the risk of the stent being crushed by muscle is very low. Stent migration is another thing, but don’t know much about it. Stents are mainly an issue when there’s bony compression which you no longer have, so that’s good.
I’ve also heard Dr. Hackman mention to someone the idea of a retrievable stent. Don’t know much about it but it sounds like something to ask your Dr about.
Lastly, about muscle relaxers, personally I do not believe in such a thing. In my experience they’re just sedatives, they don’t literally relax your muscles the same way an opioid agonist literally blocks pain signals.
I’d actually recommend looking into medical cannabis for relaxation purposes, it’s also a vaso dilator. You can actually microdose so that you don’t experience the psychoactive effects but still get the benefits, I’m currently doing this and have experienced more pain relief and muscle “relaxation” than any med I’ve tried (I tried 6 already).
Edit: definitely not saying to not try muscle relaxers, I’m just not sure if muscle relaxers is the right way to define that class of drugs, You may still see some benefits from it and it’s easier to dose than medical cannabis.
I am very sad to hear C1 trim did not resolve things.
Based on past medics advice in UK I would have significant concerns about any stents in neck area.
Stents inside skull have been shown to be very safe & fairly stable normally working safely for a long time.
But our JVs in neck operate with pressure changes (so in healthy individuals JVs collapse once we are upright) & body uses the spinal drainage system when upright.
We move our necks a lot if healthy (head turns/up/down etc) and so any stent in neck is subjected to constant movement & pressure changes. You can try to minimise movement but not pressure changes. After avoiding head turns for 2 years it creates host of muscle tension & other issues. Agree removing C1/styloid compression helps not crush stent, but concerns remain on neck stenting topic.
After revision surgery my right JV is now fully open even when upright. Body should open JVs when upright if spinal drainage not working properly. My body can only do that now. I am not fixed but can be upright longer as result. Obviously I had CCI issues too.
Being this unwell we all face choosing “least worst” options. I hope you find help you need.
I know mr Higgins at Addenbrooks Cambridge was first to use stenting and UK costs are lower than USA (but rising). Take care. D
Wonder if a round of botox in the digastric would prove helpful and/or diagnostic? And if helpful, would it allow your body and mind time to heal with possibility of those two being dealt with down the line (?).
