Jan 4 post: Tee's surgery about a week ago, and I'm home…!

I had my surgery a week ago! This is a recap of my deal and the surgery, and what I notice so far.

My surgery was performed by Dr. Samji in San Jose, Ca.

I am a vascular case with no pain. Basically had rt side jugular compression and neuro symptoms.

Background info: Main Complaints- Headaches, pulsing high blood pressure feeling in neck and face (as if rubber band is around low part of neck and trapping pressure above it), transient alternating blurry vision, eustachian dysfunction, mild unsteadiness with occasional vertigo attack, heavy fatigue/brainfog (I had more symptoms, but it makes the post way too long)

Relevant Tests Done- MRI head/neck, CT head/neck/chest, lumbar puncture, cerebral angiogram

Evidence From Tests- low or no flow internal jugular rt side, extensive collateral veins at skull base, high intracranial pressure, significant pressure differential in jugular flow across styloid at level of C1

Surgery decision I was hesitant to do surgery. I went with what my docs at home recommended, the test results, and tried to play the risk/reward thought process. The cerebral angio and the lumbar puncture were the final pieces that pushed me toward the surgery decision. I went in fully accepting that surgery may change nothing at all, and I made sure that I was being realistic in my expectations.

I picked Dr Samji because I liked that he had done quite a few (over 40 of them), that he does some nerve monitoring for the facial nerve, that he was willing to remove the styloid to the base and not just a portion of it (that was probably my biggest concern), that he would recommend removal of the other side if he saw something that indicated both sides could be causing symptoms, and I liked the reviews left by others of their experience.

The playbyplay: I traveled 20 hours by car for the surgery with two friends. The surgery center is easy to find, park in, etc. Check in was easy. There is wireless in the waiting area. There are plenty of places around there (short drive) to eat, get your meds, groceries, etc.

Someone was getting their styloid removed before me, and I wonder if it was someone here? :)

I checked in for surgery, and shortly thereafter went back to a small curtain bed area to get my IV put in. I met Dr. Samji and my anesthesiologist. They were both super nice and personable, and rolled well with my wiseazz remarks :)

I walked over to the surgery room, got on the table, and start chatting with the anesthesiologist. I realized I was feeling different and could tell that he had started his meds to knock me out. The surgery team was nice, polite, and funny. We were chatting and then I guess I was 'out', because that's all I remember.

The next thing I knew, I was back in the small curtain area and my eyes were not open yet. I could hear my friends and the nurse chatting, and could hear Dr Samji taking, but I couldn't get my eyes open yet. I remember thinking it was kind of cool that I could hear everyone but couldn't make my eyes open. I woke and my friends and the nurse were there to help me get dressed and on my way out. I missed Dr. Samji. Darn. I was off balance and really mellowed out at this point, and a little nauseous. Swallowing hurt like level 4 out of 10 just on that one side, and really the pain was not an issue. You do go home with a contact number for Dr. Samji or the on call doc.

That night in the hotel, I basically was just really nauseous. I might just have a harder time than most with nausea. The pain in the neck and incision was not bad. I noticed it when trying to swallow, but again-- it hurt, but nothing unbearable. I couldn't open my mouth more than 1/2 inch because it hurt to go more than that.

My friends took care of med timing and assisted me with walking. I could NOT sleep. I don't think that's normal. I think most people are knocked out by the meds. I could tell that my sinuses (breathing thru nose) on the surgery side were WAY way easy to breath through. I had to sleep on an incline, so I brought my giant wedge foamy thing from home, added pillows, and made it as comfortable as I could. You can get this thing at Bed, Bath, and Beyond.

I tried the bag of frozen peas on my neck, and the weight of that bag was just too much for the swelling, so I didn't use it. I was not hungry for days. I ate as much as I could starting the next day so that I would heal. I used those little applesauce pouches with the cap that kids get; I highly recommend stocking up on those for post surgery! When I could add more, I drank chocolate Muscle Milk.

I felt like I could travel around with no problems about 48 hours after the surgery. I really felt good, hardly any nausea, hardly any pain. I was not sleeping more than a few hours a day, though. I did get to do a long car ride on a twisty road 3 days after surgery day and did a 1/2 mile walking trail, which was no problem. I brought a neck brace and used it on the twisty part of the road, since it was fatiguing on my neck muscles.

I was told that I might start to feel better, then I might feel worse again about 4-5 days after surgery. I did not experience this. I have constantly improved.

Post op and changes I notice: Saw Dr. Samji for my post-op appt. He took the steri strips off and we discussed some things that I have already noticed improvement on. We are on the wait and see plan for other improvements, and for what to do with the remaining styloid.

I am thrilled with how open and clear the sinus on my right side is-- it is so EASY to breathe through my nose :) That was kind of unexpected. I think the eustachian on that side may be fixed, too, judging by how it reacted as I traversed various mountain passes on the ride home.

I do have a little nerve sleepiness in my mouth and I smile a little dorky, but it should resolve with time. I still cannot open my jaw much at all. I am not sure if my face/neck pressure is gone or not because the swelling on the surgery side of my face is pulsing just from being swollen. I won't post on that till I'm more sure. I can't lean over right now because pressure in the neck because of surgery is high. This should get better.

I was always a little off balance this year when standing around and stuff. I don't notice any of that unsteadiness since surgery. I notice clearer vision, maybe a wider field of vision than before, and more alertness overall. These are hard to put a tangible measurement on, so I will try to be as straightforward about them as I can. I realize some could be psychological 'over noticing' of things.

I can look down without the whooshing sound and without a dramatic increase in pressure in my head!

I also do not have wild heart rate fluctuations or fainting feeling when standing up from sitting or crouching (POTS-like symptoms). I hope that changes for good.

The incision looks ropey and is raised like a worm, and I did in fact scare a small child when she asked to see it haha. I told someone else that I got into a knife fight. It's healing way faster than I thought, though.

I will update as I notice things changing!

I like Dr. Samji; he is unassuming, nice, leans forward to listen when you talk, jokes around readily, and is a Broncos fan -- ha-- extra points for that! He is interested in updates, and if I need to get the other side taken out, he will be my guy to go to! He checked up on me on the drive home after I thought I had some weird medication symptoms. I appreciated that a lot.

I realize I may have left a bunch of stuff out, and that this is super long. I hope it helps for now!

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Great news! Sounds like you may be on your way to feeling better in 2014. Happy new year!! And continued good luck

Wow Tee! what a great story for all of us. Exactly was I was looking for, as I will have to drive 20+ hours also. It sounds like you are on the right track for recovery. Thank you so much for the detailed experience . We will wait for more updates:)

Thank you! I very much wanted to help someone who has upcoming surgery!

I have started getting the muscles tightening up on the surgery side. I was told this would happen more intensely at about this time...just over a week from surgery. I had some ES symptoms really disappear right after surgery- the red eyes and pulsing head pressure and headaches. Once this neck tightness hit hard this week, these things are back about half of what they were pre surgery. I *think* this is directly related to the muscles clamping down in protest to surgery. So it could be this is just a response to neck tightness clamping down on my jugular/carotid area. I am not sure. I do know for a fact that right after surgery, for days, that these symptoms were GONE…like really noticeably NOT there. Especially the red eyes; I had not seen my eyes white in so long that I kept checking them out in the mirror.

The one thing that I really think is 'gone-gone' is the eustachian dysfunction. That ear is clear and normal, with no intermittent closing off or weird sounds. I hope that stays that way!

I have not felt any off balance sensations since anesthesia, still. I have yet to lay flat, so I can't be 100% sure on this one just yet :) I get to lay flat I think in another week.

Heat was recommended for this stage of the healing. I want to recommend that if you have a heating pad, which I do, that you put it underneath a neck brace (one of those soft white braces you'd find at Walgreen's or CVS). I was really frustrated with trying to keep the thing on my neck, and this solved the problem. My heating pad is just a square cut of fabric with the control thing on the cord.

I am supposed to try to loosen the neck muscles, but I find it hard to try this with that incision there. I feel like it is too much pulling on the skin, so I am trying to not disturb that area. It's hard to work around it.

The scar is healing fast, actually. I am downing Airborne for vitamin C to help the tissue, and using vitamin E on the scar. There are some scar strips you can buy, but they do not like to stay on my neck. I don't have neck wrinkles yet, so I'm trying to make that sucker disappear :)

As far as surgery pain, it's a 2 out of 10. I could have stopped pain meds probably 3 days after surgery with no problem. I kept them at least through the drive home in order to prevent finding out what it feels like without them on the long drive home. I stopped them as soon as I was home, and don't need them.

I have a crazy bruise on the tip of my shoulder I *think* from how they position you to perform the surgery. They must have clamped me down at that spot. It never has hurt at all, but it's very prominent and purple/red. Did you guys all have that, too?

Mom4, I was not allowed to drive home (5 days after surgery), and I don't think you would want to, either. I had 2 friends volunteer. You use too much trap/delt muscles for driving, which pulls on the neck muscles in the shoulder area. Also, not sure if you're a right-side surgery person, but I was. Bring a pillow to put across your lower chest/ belly so it keeps the passenger seat belt from hitting the surgery site…it kind of bows it out and off of your neck :) I also flipped the headrest around so it wasn't pushing my head forward like E.T. lol

great advise, thank you! I am right side and it totally makes sense with the seat belt and headrest lol. Not really looking forward to the long drive but with all the pressure in my head and ears I really don’t think it would be good. Keep up with the recovery and the great posts

I know for a fact that it was the right decision to drive. Through the hills, the ears and the headaches were a lot, and that's nothing compared to the rate of pressurizing to and from around 8,000 feet like you would flying by airline. I was concerned about pain, yes, but also about getting vertigo because that has happened when I have done the valsalva when flying.

Ironically, I fly for free and I had to drive!!!

I forgot to add…weird thing: I had the hiccups each day, for all 4-5 days right after surgery. They were on and off all day, each of those days. Since then, only one day they came back.


You give me HOPE for the jugular compression and IH/pressure symptoms. I am told by highly qualified doctors and neuro radiologists, that one sided jugular compression does NOT matter. I feel strongly the opposite!

Very interesting that you showed pressure gradients there as well as IH. Hopkins did a recent fancy 320CT to look at all the vessels in my neck and head. They noted the left jugular compression (which we knew from regular CTv) as well as a small area on the right in my brain that has a short segment narrowing at the transverse and sigmoid sinus, but they said it was all fine.

I disagree!

I hope you continue to heal and see even more benefits from surgery!

My docs also cautioned that right sided jugular compression was probably not going to be the cause of my symptoms. One had noted that after he removes tumors from that area, that the jugular is often 'tied off' and that patient then builds the collaterals in to drain the blood out. I have these same type of collaterals that developed in me. These 'one jugular' patients have normal lives after that.

That's one reason I took so long to do surgery. I believe that they are not trying to discourage me, but are only telling me what they have experienced in their surgeries with cancer patients, that one side of a jugular SHOULD be enough. I have a suspicion though that ES PLUS thoracic outlet restriction is too much, and causes the high intracranial pressure. That is my suspicion alone. I am hoping that removing one problem is enough to remove symptoms.

I also believe the other side on me potentially causes restrictions in certain head positions, even though the diagnostic tests showed that flow was normal on that side. The tests are done with head in one position, though.

I also was worst in symptoms when laying on my back. My own suspicion is that I am blocking the collateral flow when I lay with pressure on the back of my head. I think that builds up the pressure intracranially and worsens symptoms. So if my jugular is inop, and then I block the collaterals with my position, I am thinking this is causing symptoms.

So basically I wanted to take a chance at getting that jugular to come back and to start being used again as the outlet for bloodflow, rather than the collaterals being used. Again, this is coming from ME and maybe this is a ridiculous idea. Docs will tell you that once a vessel has not been working, that it is NOT likely to open up again and work like normal.

However, we really got to the point that I could either live with symptoms, or go with the surgery and almost use it as a diagnostic tool. My job depends on me losing these symptoms, and honestly, I did not want to live with the symptoms, regardless!

I may well come out with the same intracranial pressure, or not. At the very least, that eustachian dysfunction thing being probably taken care of is GREAT as far as I'm concerned. I'll take it.

As far as other symptoms, I am really not sure they are gone. I hope to say that they are, but it's going to take time to reveal itself because it's going to take me doing normal activity like laying flat and transitioning upright, bending over and turning like normal to see if dizziness is gone. Are the headaches gone? I think so, but I got one yesterday, so that may be a random one or not. So far I don't seem dizzy, but I'm also not really bending over and moving a whole lot to be able to test it. The surgery makes the pressure in the neck too high to mess with that yet.

I wish the changes were overnight but….wait for me to be able to do normal activity, wait for my swelling to come down and take pressure off those vessels in my neck, and wait for MAYBE some normal re-routing of bloodflow to happen (6 months was one guess from a doctor on when this MIGHT happen, IF it does.) :)

I'll update because I know what it's like to sit here and not know if surgery is worth doing, especially with the vascular kind! :)

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I know it is your theory, but also mine! I was also told it may not open back up if compressed for so long.

I will have the surgery just for the classic Eagles symptoms themselves, but as Dr. Cognetti said, if I get relief from the IH, consider it a bonus.

I am in the same-ish boat as you.

Rest up and do not overdo it! (We need you healthy with no setbacks so you can give us updates! ;) )

You should do very well at surgery resolving your classic ES symptoms, and you will likely be able to tell that those are gone right after surgery! Excellent….you already have a solid reason for doing the surgery with your classic ES symptoms; you are right…anything else is a bonus! I can't wait for you to get it done!

Recovery is going very, very nicely over here.

Thank you!

Good to hear, hoping recovery continues to go well for you.

Hi Tee
Congratulations on your surgery. Glad you have improvement on your symptoms.
I had a CTV of my IJV post op. The IJV was still stenosed due to scar tissue. So I had it ballooned out - venoplasty. After that my symptoms were so much better.

Thanks for telling me that…I had forgotten that you had the balloon.

Darn…so afraid of that. I am trying to sleep on my back for now, and I do get some symptoms from that, still. But I keep thinking it will force flow back through the IJV. Stinkin' scar tissue argh…that's exactly what the docs were concerned about. Then I read the balloon can cause more scarring? Not sure on that one…it's a vague memory of something I read.

I endearing if mine stayed open after the venoplasty. I have good days and bad. Can’t tell if it’s the right side backing up and affecting the left.
Stress and head movement aggravates everthing. Looking down makes the whooshing start on the side with the styloid.
Of only the noise would disappear.

That looking down and whooshing sound is GONE for me. I tested that right out after surgery. I could make that happen anytime I looked down like at a book or my shoes or the floor or something. I remember that we both had that. I can picture that problem easily, the bone heading rearward and downward as you look down, and pushing/mushing the vessels in there, causing the swoosh.

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Today is my 2 months post op I still have fullness in my ear with sharp pain once in awhile not as bad before just wish this will go away I also have swelling in neck but have bad taste in my mouth when I eat and drink , any suggestions or am I expecting too much quick recovery … I am MUCH better then pre surgery :slight_smile:

Thanks for the update.