I am new to this site… I live in Colorado and I am struggling with compression of both jugular veins from Eagle and daily IIH. With this I also have a sphenoid sinus issues and it once again is scarring closed. I also get pulsatile tinnitus in both ears but not at the same time. I often wonder when pulsatile tinnitus is dangerous… I have a wonderful doctor that many of you know, Dr. Hepworth. My surgery is in December and my pre-op is in late November. I was hoping to get some understanding as to what questions I should be asking at my pre-op. I am not sure at this stage if it will be intra oral or external because we haven’t covered that yet. We will have a vascular surgeon on hand if we need to dialate or stent the jugular vein. As well, we will clean out the sphenoid sinus infection. I notice when I tilt my head up pressure pushes up thru my left sinuses and fluid can seep into my ear… We are doing the left styloid first where the pressure is higher and symptoms more severe. Can anyone tell me what their surgery experience looked like and what questions I should be asking? Thank you so very much.
Hi CONATIVE -
Today, our member JustBreathe shared this information w/ Msdstc to help him feel better informed about what to expect tomorrow when he has surgery. I hope it answers some of your questions. JustBreathe recently had her second ES surgery which was done by your ES surgeon. She will be a valuable resource for you. You can privately email her by clicking on her screen name as it appears above one of her posts. To find her posts, click on the magnifying glass icon above & type JustBreathe in the search box.
Yes anesthesia…I look at it this way, it is the best deep sleep I will get or have gotten in the last 6 years! Having had many knee surgery’s and having always chosen a spinal to be fully awake during to allow conversation with my orthopedic surgeon, there is no way I want to be awake for this one (nor is it an option) ! Check into the sleep spa
Pain that is understood is not to be feared. That said understanding what the surgeon will be doing and linking that with the discomfort that is normal will help you tremendously.
What to expect upon waking that is standard and customary:
-fullness in your ear on that side but maybe both sides
-crackling and popping in your jaw and ear on the surgical side
-tightness in front and side of your neck on the surgical side
-headache from removing the bone at your skull
-numbness in your neck and maybe parts of your face
-swelling at the surgical site
Red flags for what is NOT okay: (and are pretty rare)
-red streaks along your neck away from the incision
-bright red blood from your incision not stopped by the post op bandage
Waking pain levels vary greatly from person to person so don’t have a good answer for you there. If you feel your pain is not controlled well tell the nurse and they will give you something to feel more comfortable. It is important that you feel your pain is at a manageable place before you go home and have a plan in place.
As for sleep, following the tried and true advice from everyone on this forum is priceless to help give you the best rest possible. Sleep with your head and chest elevated, ice and stay hydrated.
You are going to do very well. It is time to put your trust in the hands you have chosen and are the best qualified! Thinking of you
Questions to ask at the pre op would be what to expect post op from the sphenoid sinus surgery. What to expect from the ES surgery is pretty well documented by JustBreathe’s post above. Hopefully some other members will contribute information based on their experience(s) w/ ES surgery.
Here are links to some additional posts that will be helpful for you:
So glad that you’re seeing a good, experienced surgeon! We have lots of members seeing him currently. I think Isaiah has covered lots of the info about what to expect, I’ll just say I had bilateral jugular compression by the styloids, causing IH symptoms, I had surgery in the UK to remove them, one side at a time. The 1st surgery made a big difference to my vascular symptoms within a week once the swelling went down, other nerve pain etc took longer, but as you have vascular issues I hope that you will see improvements soon after surgery.
I carried on sleeping half upright for a while afterwards, my mouth was very stiff to open so had soft foods & smoothies for the 1st week or 2, & turning my neck was painful so I didn’t drive for 3 weeks. I had alot of numbness & tingling around my jaw & ear initially. But not too much pain, I just needed paracetemol after the 1st few days. Every surgery is different though - my 2nd surgery was even easier, I could eat normally, but I was really deaf in one ear for 2 weeks & it felt like concrete had been poured down it, that went after 2 weeks though. I had 1st bite syndrome after both- not everyone gets it but it is quite common. You get a rush of pain in your cheek when you first take a mouthful. It’s common after any surgeries around the jaw.
I hope that you see similar improvements after your surgery; let us know when you have a definite date so that we can pray for you!
Thank you so much Isaiah! This is very helpful and I am so thankful you covered what is not normal. I am curious how the symptoms may differ for Intra oral vs external or if symptoms afterward are generally the same. Thank you for being there for me during such a difficult time!
Hi Jules. This is really helpful! My biggest want is to rid myself of this IH. It’s been a long road. I can’t do the work I once did, I can only be in the mtns for about three hours at a time and everyday shuts me down where I just have to stop and not move. Housework has gone by the wayside and bending over really sets the stage for a difficult day. I just ordered my wedge pillow. I told work I would need two weeks off but after reading this board it sounds like I need longer… I have to look side to side and up and down at my work station with people coming in. A lot of up and down over and over. Surgery is December 2. Thank you for thinking of me.
I am so sorry to hear about your current situation, I can 100% relate. Given the complex nature with IIH and CSF leaking there is no one better than Dr. Hepworth, know this! I just posted my 3 week post op update on “Another successful second side” but would be happy to chat personally in regards to the other stuff
Hi there! Thank so much for the follow up. I spoke to the drs office and it will be external. I was wondering how long you had to wait for the second surgery? I am very glad to hear you had a successful second surgery! Glad you are getting some relief. I hate to see anyone go thru this. It’s been a long road and I am so thankful for the support. It means a lot. I haven’t had a commitment in regards to a leak but it is something we will be looking at. I hate to have to wait so long but it should be worth it. Wondering how you and others manage you IIH? I often feel like I don’t know what I’m doing.
I was lucky when I was waiting for surgery in that I was just doing part time voluntary work, & a part time course, so had time to rest up. And I’d find the pressure would build through the day so I was worse in the evenings. I was getting to the point of thinking I’d have to give up driving though before surgery as the off-balance feeling was getting worse, & going round bends & especially roundabouts (do you have them in the US, I don’t think so?!) made me feel quite sick. I was pretty tired but not sleeping well either…I hope you don’t have to wait too long!
Yes, the waiting is so very difficult. He has quick become one of the top surgeons in the country with people coming to see him from all over the world (not exaggerating here)! He holds strongly to waiting 6 months before addressing the other side with the argument being it can take that long for the ANS to find a new balance and is conservative with successive intervention requiring general anesthesia (one of the few who take the risks seriously) unless absolutely necessary.
IIH management is typically addressed with Diamox, if this is not possible due to an allergy like myself diuretics are used to help decrease the intracranial pressure. Otherwise high pressure usually is improved with being upright so sleep can be challenging. I have been sleeping elevated for a very long time now which is mandatory for myself. Another natural remedy that is commonly used is Dandelion tea, a natural diuretic. If you have vascular insufficiency Omega-3 and Camomile tea have a natural side effect of being a blood thinner.
I know December feels like an eternity but you can do this! We are here to help
Hi! I read your post regarding your second styloid removal. I am so happy you are doing so well and that they addressed the CSF repair. I am adding you into my prayers for continued and forever lasting healing. I do take diamox but I can become dependent on it. I sometimes wonder if I am getting a rebound effect. I do know that at the time we do the Styloid we will address the vascular issue and also the sphenoid sinus… Not sure how long the surgery will be but I am ready! Six months till the next styloid removal sounds horrendous but I do understand. Just been a long road. Grateful I am getting closer. Please update us on how you are doing
HI Jules! My pressure is worse as the day goes on and with movement and activity. Also, a change in activity can really start the IIH. We do have roundabouts! lol. I am ok with those for now but I did have a time when I was getting worse when driving. I did speak with my supervisor and discussed taking 3 weeks off as I think I am going to need it. Did you see improvements in your IIH after the first surgery? Do you have complete resolution after your second? Thank you again for the info. Really glad I found everyone here.
Yes, I had big improvements quite quickly after my 1st surgery, it made a big difference! I had to wait a year for the 2nd- UK waiting lists! & there were more improvements after that. I was lucky that I didn’t need the veins stenting, they opened back up okay, although I still have a bit of trouble laying on the side which was worst, I think that’s more about the nerves though, which haven’t totally healed. The IH symptoms have improved I’d say over 95%- when I went on a long flight it did set some of the symptoms off again, & if I get stressed it does a little too, but nothing like how it was before, I have my life back
Wow! Thank you for sharing this! I’m so glad your doing so well! Gives me a lot of hope. I am hoping you do not have a lot of nerve pain. I can’t wait to do just normal daily activities without the IH one day. There is so much I can’t do. Thank you again. This is really good to hear