Hello everyone. Thank you for allowing me to join. I’ve been reading more thank you know but didn’t have the energy to post until now out of desperation. I had quite the fast and furious onset of symptoms this past month (though now recognize ES as haunting me the last 15 years) and have a csf leak question. For those who have had a temporal bone csf leak, what was your course of action?? Do I have Kaiser lumbar puncture and blood patch prior to surgery if a leak is found?
I see the Kaiser ENT again tomorrow and going to ask about the csf leak and later in the afternoon am having the optometrist check my eyes for pressure readings, tunnel vision, and papilladema. I’m supposed to get hard copies of med records in the mail to go to Dr. Samji in San Jose tomorrow but even then, hearing from him is several weeks out and surgery even more so. I don’t want to raise alarm bells but I don’t want to miss something and deteriorate further either. CT scan was misread at Kaiser Roseville Hospital on 10/19/23 and amended 11/10/23 to include r styloid 3.5 cm with severe deviated angle (currently pressing into throat) and left at 3.3 cm, no calcification. I have VES symptoms and now no hearing in my right ear for a week with pulsatile tinnitus. Heat and cold aggravate it and nights are the worst. Sleeping propped helps per the Living With Eagles forum (thank you!) and I found that to be true. No major headaches just some stabbing pains as fluid moves or I move it manually by rubbing my jaw and a face that feels like it’s on fire but I am on Gabapentin 200 mg/day and tapering from Prednisone (10 mg today, 5 mg tomorrow) so maybe that is helping the pain some. Any advice welcome.
I’m in CA near Sacramento and for what it’s worth, called Dr. Hepworth today. I was referred to ENT and will hear back when I hear back. I know there’s a wait. Paying out of pocket because this is no way to live. I am in bed most of the time and can no longer function well past one load of laundry if that. Showers are a struggle. Teeth brushing, hair brushing, etc. No more driving or homeschooling my littles either. Need direction please on the csf leak. Thank you so much.
Poor you, that’s really rough, especially as you have little ones to care for…others have had CSF leaks through high intracranial pressure, often caused by the styloids compressing the internal jugular veins. The trouble is if it’s patched & the styloids are the culprit, then the pressure will cause another leak…Dr Samji could remove the styloids for you and that should help if there’s compression, and also with your pain, but he’s not a vascular surgeon as you probably know so wouldn’t be able to open up your IJV if that doesn’t open itself. Dr Hepworth is very experienced but not taking new patients currently, so there would be a long wait. I don’t know if Dr Peter Nakaji in Pheonix would be able to help, he has experience with vascular ES:
755 East McDowell Rd., Phoenix, AZ, 602-521-3201, Works w/ vascular ES, has also done a research paper about shaving C1 process as well as styloidectomy
Other members with IJV compression have been helped with blood thinners like Plavix, so that might be worth a try while you wait? I hope that you can get some help soon…sending you a very gentle hug and praying that you can get treatment with the right doctor
Thank you so much for your reply @Jules. That’s what I was wondering and afraid of re: the leak. I have never felt pressure like this before in my right ear and it gets worse daily. I’m going to try green tea, dandelion leaf diuretics and bed rest to see if I can fix some of it myself.
Would a tympanometry test be of any value as I see the ENT in a few hours? Would a CT myelography be of value to check for a leak as well? Who would I see to measure IH?
Thank you for the Plavix recommendation. I was looking through past posts and saw Brillinta (spelling?) mentioned by Wendy and I know you mentioned another one Dr. Hepworth is fond of but said it didn’t really kick in for you until about day 17, if you wouldn’t mind mentioning it again.
This forum has allowed me to keep my sanity. Resting heart rate is above 100 daily and blood pressure through the roof. Kaiser looks the other way. Thank you so, so very much.
A few of us have had hearing loss with ES, but I’m not sure if a tympanometry test would be of use, I don’t know much about it, just had a quick read…I just had a straight forward hearing test.
The CT myelogram would be useful I’d think, it would be good if you could get a referral to a Neurologist to evaluate this. You could also see an Ophthalmologist to get your eyes checked, as the pressure can cause issues with the optic nerves.
Re the blood thinners, I’ve not taken them, I can’t find the discussion where the comments you mention are, but other suggestions are low dose aspirin, & @Isaiah_40_31 mentions a natural remedy in this discussion:
Possibilty of stroke - General - Living with Eagle
Sounds like your vagus nerve could be being affected too with the heart rate & BP issues…
Hope it goes okay with your ENT, let us know how you get on!
Oh @Jules, thank you so much for your reply before I saw my ENT. And thank you for the post from @Isaiah_40_31 with some natural remedies for thinning the blood. I’m on a high grade Nordic Naturals fish oil and when that’s done, will replace it with the one you mentioned. I’m also on Theracurmin which I believe also thins the blood but could be wrong. I’ll be careful so I don’t turn my blood into water either by going overboard.
At the ENT just now I got a bit derailed (maybe) as he saw a massive yeast infection in my right ear which is the one with all the problems. I had it checked last week at urgent care and nothing was noted but calcification on the drum which might have been a misinterpretation of the start of an infection. I have never had a yeast infection in the ear and feel like it is another layer of this crazy onion. Got it suctioned out and some antibiotic powder placed in it and will follow up 10 days with essentially pharmaceutical grade vinegar per the ENT.
I see the optometrist later today after reading everyone’s many posts about not taking eye pressure lightly and to get in! Thank you for your many posts regarding the eyes, @Jules. My husband said Kaiser is finally earning their money as we loose coverage at the end of the year and switch to Dignity Health/Western Health Advantage in CA. Praying the eye check goes well at 2:45 pm later today.
Thanks for all your help @Jules. I am sincerely truly very thankful.
Eyes came back heathy with no pressure issues, praise be to God. Now to clear up this ear infection and get my hearing back. Paper work and scans get sent off to Dr. Samji tomorrow. Thank you for your help today @Jules. I wholeheartedly appreciate it.
I’m so sorry for all you’ve gone through especially the recent trouble with your ear & hearing loss & the pressure in your face (could be sinuses or trigeminal nerve). I’m glad the cause of the ear trouble was finally accurately diagnosed. Yeast infx are fungal infections. Antibiotics don’t work for fungal infections so perhaps the antibiotic was in case of a secondary bacterial infection? Were you also given an anti-fungal medication - probably drops or ointment that would go directly in your ear? That’s what is needed to treat the fungus. If your ear doesn’t start feeling better w/in a day or two, please go back to that ENT & ask for an anti-fungal medication for your ear so it can recover.
Excellent news about your eyes being fine. Not everyone w/ intracranial hypertension gets papilladema. The fact you have visual changes can also point to IH.
I’m a bit unclear about your call to Dr. Hepworth’s ofc. Did they refer you to another ENT & they’ll call you to schedule w/ Dr. Hepworth once you’ve seen that ENT?
I’ll be praying your ear heals up quickly now that it’s been properly cared for & will also hope the facial pressure goes away & hearing returns.
Hi @Isaiah_40_31! I apologize, I misspoke. It was an anti fungal powder the ENT applied, not an antibiotic powder. He also prescribed an acetic acid drop to be used 3x/day for 14 days for 5 minutes each time for the otomycosis (candida growth in my case). This makes sense because I was seen in Urgent Care 5 days earlier for pulsatile tinnitus, otalgia, and loss of hearing in my ear. They flushed it and said it was an impaction with “some white stuff on the eardrum” they misread as myringosclerosis when in fact, it was likely the start of this fungal infection. By flushing the wax and adding water, it set up the perfect environment for a raging infection. Add prednisone in after a 3 1/2 week stint of it and the immunosuppression it causes and here we are.
Regarding Dr. Hepworth, I called and got a call back from Michelle who only took down my information and said she would send it to ENT because they like to do all their own booking. It was just a shot in the dark kind of thing to see if I could get on his long waiting list into next year.
My husband is overnighting the hard copies of my CT scan and medical records with accompanying Camino ENT paperwork to Dr. Samji in San Jose this morning.
I felt better at bedtime with the reassurance that pressure in the eyes looked good and we had a treatment for the ear that may well bring back hearing. And then I accidentally tucked my chin to get comfortable and stab, my elongated right styloid reminded me it was still there, still a bear, and needs attention. It caused some swelling into my throat but I did some deep breathing and drank fluids and it helped. Another sleepless night and not sure why but I’ll have to work on that. I really need my own immune system back online soon to kick this fungal infection. I have never had a fungal infection so learning more and more everyday but thankful for competent care and a treatment plan for the ear this week.
I’m pleased that you don’t have any pressure issues with your eyes. praise God indeed
And I hope that the ear issue heals soon… Good you’re getting everything sent to Dr Samji