@KoolDude, Maybe the angioplasty will help you more than expected because your compression is being caused by other soft tissues as opposed to bone. I will pray for that!
I will also be praying for you to finally get some good relief from your VOO symptoms.
Hi everyone,
Just want to update you that I had to cancel the procedure tomorrow due to family emergency. I really appreciate all your well wishes. Will let you know once I schedule it again.
Thank you!
I’m sorry for the delay but hope you can get it rescheduled soon. I’ll be praying for a positive resolution to your family situation. 
I’m so sorry that there was a family emergency and sincerely hope that all are or will be well. I also hope you can get a fast reschedule and get some well deserved relief
Oh no, hope everyone is okay and that you get it rearranged soon
As my surgery approaches I have more scattered questions coming into my mind and hope that you wonderful people can help, and hope you don’t mind my posting as they pop in:
I will expect that I’m going to have significant pain far away from the actual incision area post surgery with furious muscles and various nerve activation.
Worst will be the arm of the incision side. .I have quite severe thoracic outlet syndrome and expect the inflammation to create a world of hurt down that arm. How soon do you think it would be safe for my PT to work on that arm, pec and shoulder?
What about the trap itself?
And further away, the lumbar spine?
I made an appointment for 10 days post surgery but am wondering if anything will be safe to work on by then…?
How long do the surgeons typically say they would have to wait before they could completely submerge the wound in water?
@Isaiah_40_31 I have seen you post and I could have sworn that I copied and pasted it out somewhere (and of course cannot find), a sort of generic timeline of what one can expect post surgery. UI would love to have this for myself and to share wih hubs (understanding that people recoverin very different timelines in reality) I wonder if you would be able to easily find and paste over one of your wonderful write ups that you’ve share? It would have been something along the lines of the swelling typically only gets really bad on Day X, you think you’re doing OK in the beginning but then the pain really starts on Y, and then for the first X weeks or months you can expect things to really go up and down but then from around the end of that you should expect to see more gains than losses in your progress. I do remember the 6 to 12 months for nerves to heal if they’ve been irritated. next slide
Thank you so much 
Hi @akc -
You made me smile w/ the way you worded your timeline question. I’m always happy to repeat it (it’s quicker than hunting for where I’ve posted it previously 
) so here goes:
Days 1 & 2 are the “post op honeymoon” as the meds from surgery help to keep the pain down to some extent especially if you take an Rx pain med. If you do take an Rx pain med, it’s imperative to start a laxative & stool softener on the day you get home from surgery & daily until you stop the Rx pain med.
Days 3-5 or 6 are when your post op swelling will peak. Even if you’re feeling pretty good on those days, it’s important to keep icing (15 min on/45 min off - w/ a thin towel between skin & ice) & take pain meds on schedule including middle of the night if the schedule calls for it.
By the end of week 2 you should start feeling a bit better & seeing some small improvements. By the end of the first month you’ll hopefully be feeling more significant improvement. Fatigue can be significant up to two months after surgery but, by two months post op you should be feeling pretty good. By 6 mos post op, you’ll have a very good idea of how much surgery helped, though, as you noted, symptoms can take up to a year to gradually disappear. After my first surgery, I noticed significant improvement at 2, 4, 6, 9, & 12 mos. though I did have uncomfy symptoms from my remaining styloid. Your remaining elongated styloid & IJV compression will continue to cause whatever symptoms they were contributing prior to your first surgery. Sometimes these become more intense after the first styloidectomy/IJV decompression. It can be hard not to feel like the first surgery didn’t help much when symptoms remain, but you should be able to note improvement in spite of the remaining symptoms.
Nerve recovery is slow & is a bit of a roller coaster ride as symptoms tend to disappear then return for a bit then disappear & return. For me the coming & going of nerve pain was most prominent 1-4 mos post op, but for others it’s been of shorter duration. The good news is the days where you feel good will eventually be more than the bad days. It’s critical in early recovery to listen to your body i.e. if you have a day or days where you feel pretty good, DO NOT jump in w/ both feet. Ease into activities a little at a time & rest when your body asks. Pushing yourself will cause symptoms to flare.
I hope this is what you were looking for. I’m so glad your surgery is coming up soon! 
I appreciate your questions, @akc. I’ve got bilateral scheduled May 22nd with Dr Hackman, and have found my head reeling with questions as the date gets closer!
And, as always, thank you, @Isaiah_40_31, for your thorough insights and quick responses! I would feel completely lost without you and everyone here.
One question I’ve had as I’m pulling my list together… is Calm magnesium powder enough as a laxative? If so, what dosage seems to work the best? And would you wait until after day 2? I’m flying home on the 2nd day after surgery. Not sure if I want to take a laxative on an airplane, lol!
I’m hoping and praying that I will see relief after surgery, especially with the left-sided tremors (along with a variety of other left-sided symptoms). I’m starting to worry about recovery after bilateral, but my gut tells me this is the right thing to do. My left styloid is the one causing IJV compression (and IIH) but the right is longer. I also understand I may need an additional surgery if the compression is not relieved with the styloid removal.
Thank you all again for this wonderful forum! 
I agree with not taking the laxatives before the plane journey home to @DeeCeeNorth 
Hopefully someone can answer your question about the magnesium, I didn’t have to take any strong painkillers so was lucky with that!
I used Calm as my laxative of choice (didin’t want the chemical variety). I started taking it day 2 or 3 post op (can’t remember now), but I was already a bit clogged so I took a tablespoon of the stuff in about 12-16 oz of water. It didn’t work the first day so I took that much again the next day & then paid for taking too much two days in a row, but it did clean me out! Going forward I think I took about 1.5 tsp/day until I stopped my Rx pain meds. As with all medications - OTC or Rx - our bodies each respond differently. I’d buy a bottle of Calm (flavored is far superior to plain!) & test it out before you go for surgery. Knowing ahead of time how much works best for you will be helpful. I found if I took it in the morning, it would sometimes work by that evening but often it wasn’t till the next morning so 12-24 hrs after consumption. The recommendation is to mix it with warm water. I added the powder to the water but you can add powder first. Leave some headroom in your glass because the solution will bubble up. The drink is fizzy like soda.
I’m glad you have a practical outlook about your surgery. I’m praying you only need the one surgery. Your recovery will probably be a bit rough for the 3-4 weeks but the going will get much easier after that. Don’t forget you can request a course of Prednisone if the pain is too overwhelming. A few of our members have done that & Dr. Hackman has been willing to comply.
Thank you, @Isaiah_40_31…for all of that!
Yes… I’m finding that I’m getting a little leery and worried about the recovery. I work at home (doing telehealth), and am hoping that I’ll be able to sit and see my clients the second week after surgery. Don’t have to move much, but I do have to talk (and laugh a little!). Hope that’s not too unrealistic!
Definitely going to listen to Dr. Hackman’s recommendation (one side or bilateral), trust him, and listen to my body as I recover. I plan to ask for Prednisone based on what others have said. No turning back!
Some members have found that talking for long can cause quite a pain flare up after surgery, so that’s something to bear in mind when you go back to work…I don’t know if it would be possible to ask to go back part time for a bit?
You expressed the sentiment that I also have exactly. No turning back:). Thank you for popping into this thread and joining in the conversation. I think it’s really good to read other people’s questions and I’ve been doing that as much as I can as well. I hope that you have a really smooth recovery and are able to do telehealth in that second week. And it’s good to hear that you’re going to listen to your body in either way.
On the sharing side, I am also mentally prepared for my left side to possibly need a redo surgery at some point. Mine is caught between C1 and the styloid. And the doctors are now realizing indeed that when C1 is involved, it regularly needs to be shaved. Dr Hepworth is starting to do this as well. But he is also the surgeon who tries to move the vein away from C 1. I don’t want to have my transverse process shaved, and so I’m hopeful that moving it away will be sufficient and it will stay there. But sometime down the road I may need to have a redo if it doesn’t. I think we all need to do what our gut tells us is the right thing. Doesn’t mean it’s always going to give magical results, but there’s something in our intuition.
@Isaiah_40_31 Yes that is exactly the right up that I was thinking of! Days one and two three to five or six Etcetera Etcetera. Thank you so much! And you should definitely keep that fronts and center on your laptop so that you can just paste it in one and as needed thank you again so much for the time and care that you put in to helping with these questions. I unfortunately had the audacity to walk up a flight of stairs trying to take them to at a time a week ago. I was trying to move slowly and intentionally and so was looking down at my foot placements. Doing that triggered a muscle spasm in my left trapezius. Well both, but the left always gets angrier, surgery side. One week later and every little wrong move that I do in a day is triggering it again with spasms going up the side of my neck, the whole trapezius length, across my pecks, and triggering very unkind things down my arm and into my hand. My body is a ridiculously oversensitive wreck! That’s why I’m a little bit worried about what post op is going to do to me. And now, a little bit worried that it won’t settle itself down in the next two weeks and just chill out in time.
I have a small follow-up question on your pt advice. You said that PT2 soon will slow nerve recovery. Can you explain that just a little bit? A part of me wonders if some of the PT that we are doing now and have been doing for a long time might be drawing out some of my symptoms. As I am truly hypersensitive, my PT is extremely gentle. Every week when I leave my spine is in beautiful shape perfectly aligned, I’m able to stand tall my ceasefire feels good. Over time he’s gotten more and more gentle with how he touches the muscles because if he touches them a little bit too firmly they will spasm afterwards. And so I think my question is, what is the relationship between touch and nerve recovery? As in, if he does a really gentle touch on a muscle, and someone that is hypersensitive like me, might that slow nerve recovery? Or is it just muscle that gets mad if it’s going to PS if this question is too complex feel free to ignore 
PS the laxatives on the plane cracked me up! 
I’m also trying to figure out how one tests out the laxatives that they choose before surgery if they’re not in need of them.
I had another couple of small questions pop into my head yesterday. Of course I knew I would remember them when I was replying to these wonderful messages… and of course I don’t. Oh well, they will come back
I think maybe you’ve answered your own question about the PT- that if not extremely gentle it could trigger tight or spasmed muscles, which in turn could trap and irritate nerves which are trying to heal (even if it’s not that actual muscle, we all know one tight muscle can seem to set up a chain reaction of tight muscles through others which could irritate nerves further away…) Obviously surgical recovery does vary depending on the doctor’s technique- some cut through muscles to be able to access the styloid, others have worked out ways to go in between the muscles. If a muscle is cut during surgery then that needs to heal properly, and there might be stitches internally. This is just guesswork and (hopefully?!) common sense, not something that’s come from a medic.
But some light touches can stimulate nerves to heal…
I think that’s the case, the platysma muscle is perhaps almost always cut through when accessing through the neck below/at the jaw line, as it covers everything there under the skin like a flat thin sheet. It’s later “closed” with sutures, so healing takes time.
Incisions in front of the ear perhaps do not touch platysma nor any other major muscle (that’s from Dr Hackman’s surgical notes), but I’m not sure whether or not any other major muscles (like SCM) are affected when the incision is done behind the ear.
Intraoral surgery most likely preserves all the major neck muscles, as the styloid access is quite straightforward from the mouth side (just very limited).
I had my surgery with Mr Axon in the UK, he did say he doesn’t cut any muscles, certainly I think my recovery was easier than others on here, he goes in behind the ear…I guess you’re right about the platysma muscle needing to be cut for most cervical incisions.
@akc -
I’m sorry about your muscle spasms being triggered by stair climbing. It’s so tough when we’re active people who find ourselves needing to be far less active. We want to continue challenging ourselves even at a lower level, but our bodies sure let us know when we’ve overstepped!! I do hope that problem settles before surgery, but the good news is, it could be totally gone when you awake from surgery or within a few days afterward. That’s something to hope for & look forward to!
Brilliant suggestion!! Thx for that!!
I agree with all @Jules said about muscle/nerve recovery & definitely endorse very gentle touch/stroking of post op numb areas starting 2-4 weeks post op to begin stimulating the nerves as they heal. If touching them causes pain to flare, then they aren’t yet ready for stimulation, if they aren’t bothered then all is well & you can continue the stimulation activity daily. Just start w/ a very short stimulation time & gradually progress to longer periods. Also using a lubricant such as Bio Oil, vit. E oil, coconut oil, etc. will help your fingers glide smoothly & not tug at the tender spots.
I think the biggest thing to learn about the laxatives is what is the length of time you can expect for them to work, thus taking them even if you don’t need them could give you an idea whether it’s 12 hours or 24 hrs or some other timeframe after ingestion before they provide “production”. Granted they may work faster if your stomach is pretty empty for a couple of days vs longer if you’re eating 3 full meals a day.
If you think of those other questions, please post them.
Thank you @jules and @vdm for the very helpful info!
I’ve noted the muscle that you called out @vdm and will ask Dr Hep in my pre surgery consult if he needs to cut through deeper ones as well or works through/around them.
Jules, Axon’s technique behind the ear… I don’t think I’ve seen any pics of anyone with that post surgery. I can understand why the neck cut when the whole jug and areas around need to be looked at but in cases where it’s straight up compression like you, how nice!
@Isaiah_40_31 an aha my end. I bought scar cream instead of oil thinking they were for the same thing… I just ordered a vitamin e oil for that super light touch you spoke of (bio oil has fragrance… allergy… 
)
I’m prepping my too lengthy list of questions as I think of my pre-op apt I definitely need to reduce it! A lot are specific things I want to review with him like importance of how I’m positioned on the table for my TOS, that I can’t open my mouth more than an inch so they’ll need the kiddie ventilator, to please not stitch the nerve monitors to my tongue but instead tie to teeth (I am SO glad that I’ve spent so much time soaking up what people say, as so many are things that can really make a difference but you’d never know to think of).
I digress… sorry… Ok, so, here are the non-specific to my case questions that I still have open or am looking for confirmation to close (and that I don’t think I should spend his time on… but do need to know…):
And finally, are these timelines correct?
Whew! Can you see my mind spinning with all the questions?
PS. I know it’s a lot of questions so please feel free to skip over any. And as always, thank you so much!
I’ve not heard of nerve monitors being attached to the tongue, is that a common thing, have you heard about it elsewhere? Mine were attached above the eyebrow- I had some impressive bruising after that, I thought they’d dropped me off the table Apparently it had just nicked a vein…definitely worth asking about where they attach the nerve monitors though.
Keeping head elevated really does help with swelling, so worth trying to find a comfy position, even if it means sleeping in a recliner afterwards. I couldn’t lie on my surgery side for a long time afterwards, but we’re all different so I’m sure your body will tell you if it’s not ready to do that…I think with icing just keeping it on for 15 mins at a time is the standard recommendation for any inflammation, as it reduces blood flow to the area; if left on for too long it can slow healing in the tissues.
’ Leaving ice on an injury for too long can cause more harm than good. Because ice constricts the blood vessels, it can reduce the blood flow to the injured area and slow the healing process. ’
Probably best to ask the doctor about how soon you can swim & get a scar wet…
Your timeline sounds about right I think 