Hi All,
I was hoping to get some input on how many people diagnosed with ES also have IH (Intracranial Hypertension). I have a few questions in regard to it.
Any and all input would be greatly appreciated!
Thank you!
Krista
ES was diagnosed first, IH symptoms came later, still waiting to see consultant for scan results. The symptoms I get are pressure in both ears, pressure in my head , pulsatile tinnitus, feeling pulse in neck and head, weird pressure feelings like I've got something on my head, headache, neckache, and a horrible feeling of falling sometimes, also feeling off-balance and very vacant!. I also get pressure feelings in my temples, and pains in my head- trouble with ES is that a lot of the symptoms could be either!
I saw a dental clinic consultant who diagnosed the ES, now referred to a skull base surgeon and otarangolist (or whatever they're called!) who's suggested checking for IH.
Presumably anyone with vascular ES where there's compression of veins would get symptoms- if the blood can't drain away properly from the brain because of an obstruction, then the pressure can build. I get some symptoms pretty much all the time, others come and go, like ES. Also worse first thing in the morning, then it gets worse again late afternoon onwards.
Is this similar to you?
Thanks for responding Jules!
Yes I have similar symptoms. I have bilateral ES. All my symptoms are on my left side where I had surgery in December. That’s what is concerning to me. So I was trying to get an idea if there was a relation to people having surgery and then experiencing IH symptoms or if it was there all along. It’s hard to tell because symptoms are so similar. I almost feel like mine are getting worse. I don’t believe it is from the surgery. I think my jugular is still possibly being compressed at the skull base causing a blockage, IH or possibly a clot. I’ve been having a lot of scary neurological symptoms and ended up in the ER Saturday night. I see a Neurologist today so hopefully I get some answers. I’m so scared right now and can barely function.
Jules said:
ES was diagnosed first, IH symptoms came later, still waiting to see consultant for scan results. The symptoms I get are pressure in both ears, pressure in my head , pulsatile tinnitus, feeling pulse in neck and head, weird pressure feelings like I’ve got something on my head, headache, neckache, and a horrible feeling of falling sometimes, also feeling off-balance and very vacant!. I also get pressure feelings in my temples, and pains in my head- trouble with ES is that a lot of the symptoms could be either!
I saw a dental clinic consultant who diagnosed the ES, now referred to a skull base surgeon and otarangolist (or whatever they’re called!) who’s suggested checking for IH.
Presumably anyone with vascular ES where there’s compression of veins would get symptoms- if the blood can’t drain away properly from the brain because of an obstruction, then the pressure can build. I get some symptoms pretty much all the time, others come and go, like ES. Also worse first thing in the morning, then it gets worse again late afternoon onwards.
Is this similar to you?
Thank you Teo!
teo said:
Krista,
How did you get on with your neurologist? I'm hoping that you've got some answers...
Just wondering, since you've had surgery, was your surgeon experienced in this- did he take enough off the styloid? Maybe he didn't take it back far enough and you're still getting compression of the vein? Or maybe the other side is causing enough compression to give you IH?
I saw the consultant today for the results of my scan. It shows that the styloids both sides are compressing the jugular vein, which he thinks is the cause of my IH symptoms. He's going to operate on the worse side. He mentioned on the scan that he would have to go the external route for the surgery, as he wouldn't be able to take enough off the styloid intra-orally to stop the compression, he'll have to take the styloid off quite high up near the skull base.
I'm not an expert in anatomy, but from what he showed us on the screen, it looks like the styloid runs alongside the vein compressing it for quite a way, so quite a lot will need to be taken off.
Good luck to you!
Hi Jules,
Nothing yet. He scheduled me for an MRI next Thursday. He said it will show if I’ve been having mini strokes. My surgeon had done about 10 ES surgeries. Not as much as some of the others out there but I felt comfortable with her. She has done both intraoral and external. She did an intraoral approach with mine because my styloid was protruding into my tonsil fossa.
I don’t believe enough was taken off. I think my jugular vein or something else is still being compressed. I am to the point now where I am missing so much work and I can barely stand or walk around without feeling like I’m going to pass out. My heart rate is going crazy as well. I don’t know what to do because my surgeon is out on leave until 4/13 (She had her own surgery) no one else in her office treats ES patients so when I call they just tell me to go to the ER. Which I’ve done within the last week! I called them back yesterday and today to make them reach out to my surgeon to advise.
I can’t even think about going to work, sitting in front of a computer and having to function. Even when I’m lying down propped up on pillows I’m still symptomatic but I don’t feel like I’m going to die. It’s the only position that slightly helps. When I lie flat all of my symptoms get even worse than when I stand. It’s so weird and scary.
I definitely think I need some post op imaging done.
Thank you for thinking of me and I hope you get the relief soon. Sounds like your surgeon has the right idea!
Krista
So scary to think you went thru surgery and still have issues. Will another surgery fix this? Are we all at risk of IH? Is there a cure/treatment for that or is it fatal? :(
krista3 said:
Hi Jules,
Nothing yet. He scheduled me for an MRI next Thursday. He said it will show if I've been having mini strokes. My surgeon had done about 10 ES surgeries. Not as much as some of the others out there but I felt comfortable with her. She has done both intraoral and external. She did an intraoral approach with mine because my styloid was protruding into my tonsil fossa.
I don't believe enough was taken off. I think my jugular vein or something else is still being compressed. I am to the point now where I am missing so much work and I can barely stand or walk around without feeling like I'm going to pass out. My heart rate is going crazy as well. I don't know what to do because my surgeon is out on leave until 4/13 (She had her own surgery) no one else in her office treats ES patients so when I call they just tell me to go to the ER. Which I've done within the last week! I called them back yesterday and today to make them reach out to my surgeon to advise.
I can't even think about going to work, sitting in front of a computer and having to function. Even when I'm lying down propped up on pillows I'm still symptomatic but I don't feel like I'm going to die. It's the only position that slightly helps. When I lie flat all of my symptoms get even worse than when I stand. It's so weird and scary.
I definitely think I need some post op imaging done.
Thank you for thinking of me and I hope you get the relief soon. Sounds like your surgeon has the right idea!
Krista
No, we're not necessarily at risk. If the styloids are at a certain angle they can compress blood vessels, and depending which vessels gives different symproms. My understanding is if they're compressing arteries, it can cause dizziness and fainting, or mini-strokes as the blood can't get into the brain to give it oxygen. Krista's and mine are pressing on the veins, so blood gets into the brain but can't get out as well, causing the pressure inside the brain to rise slightly (IH). The symptoms of this are headaches, vision problems and weird sensations like falling, plus pulsatile tinnitus, and feeling pulsing in your head. If doctors don't know the cause, then a lumbar puncture is done to remove some fluid which brings the brain's pressure down. If it's the styloid's causing the problem then removing them will obviously help. If they find with Krista that not enough of the styloid was taken out to above where her jugular is compressed, then another op to remove this would help.
Hope this helps Lisa!
Yes Lisa exactly what Jules said. Thank you for the response guys!
Krista
Jules said:
No, we’re not necessarily at risk. If the styloids are at a certain angle they can compress blood vessels, and depending which vessels gives different symproms. My understanding is if they’re compressing arteries, it can cause dizziness and fainting, or mini-strokes as the blood can’t get into the brain to give it oxygen. Krista’s and mine are pressing on the veins, so blood gets into the brain but can’t get out as well, causing the pressure inside the brain to rise slightly (IH). The symptoms of this are headaches, vision problems and weird sensations like falling, plus pulsatile tinnitus, and feeling pulsing in your head. If doctors don’t know the cause, then a lumbar puncture is done to remove some fluid which brings the brain’s pressure down. If it’s the styloid’s causing the problem then removing them will obviously help. If they find with Krista that not enough of the styloid was taken out to above where her jugular is compressed, then another op to remove this would help.
Hope this helps Lisa!
Krista any update on how you made out? I am having similar issue.
It’s been a while since Krista has been on- if she doesn’t reply it could be that she’s not receiving the email alerts any more… I think Krista was diagnosed with POTS & an autoimmune illness, so it wasn’t just ES causing symptoms.