Surgery complete with Dr Hackman 6/20/22

[vdm]

@elijah please be very careful with MRV. The contrast material contains Gadolinium metal which is extremely neurotoxic. Vast majority of people don’t have immediate or serious reaction, as the metal atoms are bound to the carrier molecule preventing the GD ions from being released. However, some of it is retained in brains, bones, joints and soft tissue with every scan. Accumulation can lead to very serious long term effects.
There is growing amount of evidence of this toxicity, because previously the MRI contrast was just too new thing to understand it’s long term effects.
The reality, healthy people with healthy kidneys who undergo urine tests for heavy metals, usually keep eliminating significant amounts of Gd for at least 80 days even after being administered with “safe” macrocyclic contrast agents (the macrocyclic is considered more stable, i.e. has significantly lower chance of releasing free gadolinium). Meanwhile the doctors/radiologist state it’s eliminated in two days and is absolutely safe.
This is quite growing research field right know and efforts being made to create non-Gd based contrasts (using Manganese for example).
Google: Gadolinium contrast toxicity

Btw some people after MRI with intravenous contrast dose have reported similar things like you mentioned, weird skin sensations.

[elijah]

I’m vaguely familiar with what you’re talking about but I’m trying to balance the radiation as well. If I need to do another follow up scan my options are CT scan (with contrast I’m assuming to see the veins), MRV and angiogram.

And then there’s always the chance I’ll need angioplasty to remove the clot from my left side of it didn’t dissolve.

How is one to navigate this?

[vdm]

True, it’s a tough choice
Arteries can be seen with regular MRI using appropriate sequences and parameters. With veins that might be more difficult. Ultrasound?.. But yes, the Ultrasound won’t work if that’s inside the skull…

[Isaiah_40_31]

Really glad for the eradication of your most severe symptoms, @elijah! I’m sorry for the facial things but agree it’s most likely trigeminal &/or facial nerves causing the sensations. It can take up to a year for nerves to fully heal after ES surgery so you may have awhile to go before those symptoms fully resolve. Taking amitriptyline is a good plan for now. I really hope it helps eliminate, or at least reduce, those symptoms.

I had a gadolinium injection last fall to look at the condition of one of my hips via MRI. It was w/ fear & trembling that I accepted I needed to have the injection. The radiologist was, of course, dismissive about any danger from it.

There have been discussions about gadolinium on this forum. Click on the magnifying glass search tool above & type - gadolinium - into the search box & discussions will come up for you to read.

[elijah]

8 week post op update.

I am still free of all my iih symptoms. I had a ultrasound done on my IJV and I believe the flow velocity was 25 cm/s at the highest point they could measure. My Dr said this is amazing and was super happy with the results. I also went to have my cervical spine checked and did an x-ray in flexation, extension and rotation and the orthopedic surgeon said that my neck is normal and healthy and he saw no signs of any hypermobility.

My only lingering symptoms are surgery related, muscle tightness by sub occipital - which pt and dry needling is helping - and some weird sensations, like burning skin on my forehead and eyebrows, some stinging and pinching on my scalp and few other weird ones. These are more annoying than disabling and I’m only a few weeks into amitriptyline so it’s really fine. I think they’re mostly nerve related but not so sure about the skin burning feeling, maybe my vES triggered some inflammation and it’s leading to rosacea or something like that?

Anyways, I’m just super happy with how I am and really grateful for getting my life back. Things couldn’t have gone better and being one of the success stories feels humbling and special.

[Eagle1]

Thank you so much for sharing your recovery experience! I am almost 4 weeks out from surgery and still experiencing IHH symptoms and your posts give me hope! I also have the bouncing vision and am so glad to hear yours has improved. Praying for continued healing for you!

[Jules]

So good to hear @elijah ! I hope that the niggly sensations soon go too, but brilliant that the vascular symptoms have improved so much

[Jules]

Sorry to hear that you’re still getting symptoms, there could well still be swelling, will keep praying that things improve for you, so good of you to be supporting others too

[Isaiah_40_31]

HOORAY for HEALING! So glad you’re doing so well! The burning, pinching, pressure, etc feelings are all signed of nerve healing. They may go on for months but will gradually become less & hopefully go completely away. I hope the Amitriptyline makes a difference for you.

[Eagle1]

Thanks so much Jules! I am hopeful that once the swelling goes down things will start looking up!

How long did you sleep on your wedge pillow after surgery? I am sure it’s probably best to sleep on it as long as possible while there is swelling, but for the first time in a very long time I am finding it comforting to sleep flat for a few hours a night. Very exciting! Dr. Hepworth’s office said to sleep on the wedge for a couple days and I’m almost 4 weeks out now so I’m guessing it’s alright, but I would love to hear from you on what you did. Thanks so much!

[Jules]

I still couldn’t lie flat comfortably until I had the second side done, & then probably not until a few months after surgery & I’d got used to it by then so didn’t mind! But I’d think if you’re more comfortable flat & after 4 weeks alot of the swelling should have gone down, so should be okay!

[PatientD]

Hi, on the facial issues, I had episodes of face getting very red and my forehead, temples,nose & other areas could feel abnormal. In the end I worked out that for me this meant too much blood was trapped in my skull and that body was using my facial veins to try & help drain the blood. After all my ops I don’t get that so much now. I hope to get scan in future to see if abnormal blood trapped inside my skull has decreased now. But at week one I can feel blood is getting trapped at back of skull still. I use Helios device on NIR setting on my shoulder areas & this can help reduce blood trapped in skull. Hope that this is helpful & that your facial symptoms improve with time. D

[elijah]

Hi y’all, coming up on my one year update.

The good news is that my IH is still in remission as well as my visual symptoms. I just had my optic nerves and visual field of vision tested with all perfect results.

My debilitating frontal facial pain is also gone along with brain fog and head pressure. So all in all, I’m extremely thankful for how things have gone, all things considered, especially since I know other members haven’t gotten as lucky as me.

I’m not out of the woods yet, though. For one, I’m still dealing with pain in the ear incision are from the surgery. I’ve yet to see a Dr to help with this but I have an appointment coming up in a few months to try some injections or maybe something else.

I’m still dealing with very strange symptoms in my scalp, back of head and face. Burning, stinging, pinching and aching. I feels like it’s on my skin but I know it’s not. It just doesn’t feel like it’s coming from “inside my head” if that makes any sense. Sometimes if my hair is touching my forehead for too long I have to move my hair and the pain goes away for a bit.

I’m convinced this is some sort of facial neuralgia. The question is if it’s “idiopathic” or if I still have some lingering venous congestion which is causing pressure on my nerves. I’m not entirely convinced it’s that because I find it odd that I wouldn’t have any other symptoms of raised intracranial pressure. But honestly, who the hell knows anymore?!

So I am going to be scheduling my first scan since my surgery and it will be an MRV without contrast. If my veins look good then I think I can rule out vascular involvement and focus more on nerves.

If there’s some stenosis than I’m open to trying balloon angioplasty, if that doesn’t work than it’s likely there’s still some compression from the c1 but I’m not sure my symptoms are bad enough to warrant surgical intervention and I’m getting ahead of myself here.

All in all, I’m still happy with how things went and I’m really hoping the vascular issues are behind me. As crazy as it sounds, I’d rather deal with nerve stuff than vascular stuff. I’m lucky that I don’t have true Trigeminal neuralgia (type 1) so obviously I’m not speaking from that perspective.

[Isaiah_40_31]

@Elijah - Thank you so much for coming back to share an update. I’m really glad you’ve gotten such a good recovery from the vascular compression. I did some sleuthing regarding which nerves innervate the scalp, & there are a bunch. I’m guessing your trigeminal & facial nerves could both playing a part on your face, but it seems maybe your occipital nerve is to blame for the back & top of your head. Trigeminal nerve may also be what’s causing the pain at your ear incision as it originates close to that area.

Have you considered getting an Rx for a nerve pain medication to help alleviate the intensity of your pain? Sometimes just relieving it for a bit is all you need for it to go away & stay away, but other times, the nerve pain meds are needed for the long term.

I really appreciate you keeping us updated. Please come back to let us know what you learn about the pain you still have & what your MRV shows. Hoping nothing serious shows up!

[elijah]

Thanks @Isaiah_40_31.

I tried amitriptyline 25mg for months in the past and I don’t think it did much, in fact I think it was causing me to clench at night and giving me night sweats.

For now, I want to rule out that there is no vascular involvement (I sure hope so) and I’m hoping an MRV will give me that info.

The only part that irks me a bit is that these weird symptoms started the same time my vascular symptoms did, so part of me thinks there definitely is a connection, but it could also be that the same thing that happened to trigger my vascular issues, it also caused nerve issues. Who knows?

From what it sounds like, I have facial neuropathy which is just another way of saying atypical trigeminal neuralgia. To begin with, I think the debilitating pain I had before surgery was nerve related. I’ve spoken to so many people who and far worse IH than me and no one described the pain I was having. Specifically a terrible pain in the front of my face and bridge of nose, like someone was jamming their fingers into my face. The question is if the nerves were being irritated by the increase in pressure, or if it was my styloids causing the irritation.

My hope is that this isn’t due to any increase in intracranial pressure and I will be able to manage with some other meds I haven’t tried yet, like gabapentin or cymbalta or whatever Drs are handing out these days.

Not thrilled to go back on nerve meds but if it helps who am I to complain.

[Jules]

So pleased that you have improved since surgery, that’s great to hear! It might be worth trying a different nerve pain medication, just because one didn’t work another might help? I would guess that it’s more likely to be nerve damage from either the styloids when they were in, maybe damage during surgery or scar tissue, or a combination of those. Some members have tried laser therapy for scar tissue, it could maybe help with the incision pain?
I had the nerve pain in similar areas to you, this started a while before the vascular symptoms I had. The vascular symptoms have improved hugely, I still have a bit of nerve pain, but luckily for me Amitriptyline helps.
I hope that the scans you have put your mind at rest about vascular issues now!