60 days post op and 23 days pre op

General
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Well today I’m 60 days post op after having my left stylohyoid ligament (ligament only, not styloid process) removed via the external approach in Houston with Dr. Donovan. Original Post Op Post

I have my right side scheduled for removal next month on 10/10. Strangely, I haven’t been having so much pain on my right as of late, and I’m becoming very confused about whether or not I should postpone my right surgery. I’m concerned maybe my left side was just making my right worse, but as I heal maybe the right won’t be so bad. That being said, the right side is also nearly fully calcified. And I was having right side pains about 2 months or so before my left sided surgery. But my left side was where the pain originated in Feb. and it’s always been worse on my left. But I have had pain on my right that got worse about a month or so post op from my left surgery and was still there more consistently up until maybe a week ago or so. For instance, for awhile, on and after 8/31 I was having right side pains when trying to smile. But I haven’t been smiling much now due to trying to not make the pain worse). But even if the right side pains are not bad today, I don’t know if they will be tomorrow. I have my CT scan with contrast set for next Thursday to go over with Dr. Donovan on 9/27.

But to add to all of this, yesterday morning, I woke with what feels like a kidney stone on my left side. Fun times. I’ve had kidney stones before. The last ones I know I passed were on 8/1/15 and 8/2/15. So now today I’m going to get a renal/bladder ultrasound. Btw, the stones I had before were calcium oxalate.

Thankfully my right side hasn’t been symptomatic in the last few days (not much of anything there). But my left side (the side I had my surgery on) has been having more nerve feelings in the last week or two.

I wish there was a manual of what is normal, month by month, week by week, day by day. I know ES symptoms are different for everyone, and same with the healing process. But it’s still a struggle. Especially for those of us who also suffer with an anxiety disorder (or two).

My left side has been getting the “bad nerve pain” again sporadically, like pre-op, but maybe not as bad as it was pre-op. It only started coming back more in the last couple of weeks. Before that I really only had maybe one flare up of that nerve about a week post op., and then a few minor times after. But in the last couple weeks it’s been more often. So I’ve been told it’s normal when the nerves start coming back online and as they heal.

The back left of my tongue still feels tight quite often. And my left lower lip still doesn’t work right (I can’t pull it down all the way and the right side tries to overcompensate, so my teeth show more on the right side). I also often feel a tightness and almost like a swelling that seems to come and go (maybe it’s always there) under my left jaw and above my scar. I’ll post a photo of that from Tuesday with the circle in the area. I think it’s right around my lymph node. It’s also tender at the lowest part of my scar toward the bottom. Sometimes with nerve sensations in my scar.

Last month and earlier this month, I was so ready to get my ride side ligament removed with my surgery on 10/10. In fact I was wishing I could get it sooner. One reason for me is that between my surgery I was trying to do egg retrieval. However, it became too much stress with the ES and the egg retrieval stress. Last month my cycle was canceled because I caught Covid the day I would do the trigger shot (and a minor surgery would’ve happened two days later). Well this month I decided not to try egg retrieval again and let my left side heal with less stress (Thanks kidney stones for showing up). And I had planned to have my surgery on 10/10 to remove the right side, so that I could heal and then get back to egg ret. However, my concern now is if I’m not having a lot of pain on my right side, if I should postpone my next surgery, knowing that the ES pain could come back at any time, and possibly be even worse. Or if I should go through with the surgery and just get it over with, knowing that I have had right sided pains (and that it’s I believe nearly fully calcified as well). I don’t feel comfortable doing another egg retrieval cycle ideally until after my ES surgery is done. But I also need to get back to egg ret. soon due to my age.

But, on 10/10 I will be just shy of 3 months post op. So I don’t know if I get my right surgery how much that will slow down the left side healing. And I don’t know if it’s advisable to get the surgery should I still not be in much pain on my right side.

For now, (today at least) I’m more focused on the acute kidney stone type pain, and trying to figure out what’s going on there. Anyone who has had kidney stones knows how much pain it causes. Hopefully if I have a stone it will pass quickly, and before my CT of my neck next week, etc.

Here are some photos from today. You can go to this link to see my older post with my before and after photos: Original Post Op Post

From Tuesday to show the area I feel tightness and swelling(?) sometimes.

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From today, 60 days post op:

Smile 60 days post op:

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Scar 60 days post op in the sun:

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I feel for you, it’s quite a dilemma! I’ve never had kidney stones but know they are really painful, so I feel for you & hope that they pass quickly!
Firstly, re the pains you’ve had on the surgery side, 3 months is still early days for healing really, so it’s possible to still have flare-ups, and random pains etc. It could be that you’ve overdone things a little & aggravated the nerves again, and also as they heal you can get strange sensations- itching, tingling shooting pains etc.
As for the right side- you know from before that pain can come & go, so although it’s settled at the moment, it could well flare up again & as you say, you could then have a long wait for surgery. It’s also possible to get cross-over pain, so who knows, it could be aggravating your surgery side! Equally, if you had surgery on the right then it could irritate things on the left a bit as your neck adjusts, so if you do have a second surgery be prepared for that. As you have such extensive calcification, nobody can say for sure, but if you’ve already had symptoms I would think that they’d be unlikely to suddenly disappear forever…Whether you have the egg retrieval done first or the surgery only you can decide, it’s a difficult decision.
Re the tightness & swelling where the incision is, there are several discussions about massage of the scar & healing, so have a look through if you have time; here’s a couple of recent ones:
Post op incision care recommendation to others - General - Living with Eagle
Novafon, sound wave self-massaging device - Symptoms and Treatments - Living with Eagle
Food for thought? Will pray that you kidney stones improve soon & that you make the best decisions for you, sending you a hug :hugs: :pray:

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Thank you for taking the time to share your story and the photos. I wish you speedy healing of all symptoms that affect your life negatively. Take all the time you need to decide about surgery on the other side.

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Hi, my main thoughts are to try and pace yourself as best you can, doing too many things at once won’t help your health recover. Doing too many things at once also makes it harder to figure out what is or isn’t helping, I try to change one thing at a time. Delaying surgery is never an easy decision, especially if the rescheduled date is a long way in the future. If it’s just a few weeks delay to give you some breathing space, and your pain is not too bad, then do that is it will help you. But if it’s months of delay if reschedule that would concern me if I was in your shoes. Only you can decide what is best for your mental & physical welfare. Hope that helps. D

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Thank you, Jules. I’m still having left kidney pain, unfortunately.

I’m only 2 months post-op for my left side. So that makes sense.

For my right side, one thing I’m curious about, is: is it possible that the pain I started experiencing on my right (about two month pre-op for my left–more symptomatic side), that those were merely crossover pains from my left? And/or that any pains I get now on my right (unoperated side) could just be from my left recovering? My husband says that he thinks I’m pretty aware of where the pain is coming from. I mean, I think I can feel my right side calcified ligament. It’s just so strange that the pain has gone away almost entirely on the right for days now. With only very occasional instances, but not too bad. I just don’t want to postpone my right side surgery (10/10) if it’s likely to be pain caused by its own side. That way I can get it done with and move forward with healing. Then do egg retrieval. Doing the egg ret. between the surgeries is hard because I think the hormones (even my period) have an effect on my pain levels. So I’ll be curious to see if the right side pain comes back in the coming week or so.

I’m still planning on having my CT next Thursday.

Do you know how to get the 3d program to view the imaging? I don’t have a disc drive anymore, so I’m guessing many people use a USB flash drive?

Thanks so much for this helpful info about massaging the scar.

Thank you for your prayers! I really appreciate it! And thanks for the hug :blush:

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Thank you so much, Pamela!

I unfortunately don’t have a lot of time to make my decision for the other side. But I’m hopeful it will become more clear before 10/10.

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Thank you, I think that is great advice. A friend recently told me, one big thing at a time. That’s why I didn’t do another egg ret. cycle this month, as I was hoping to give my left side more time to heal without the stress.

I am scheduled for 10/10 to have the right side ligament removed. But my surgeon did say they get busier around the holidays I think. So I’m guessing I might have to wait longer than normal for my doctor to reschedule. Usually he goes about a month out, but as most know with ES pains, a month can feel like forever. I remember just earlier this month when I was having right sided pains, I was saying how I wanted to get the ligament out even sooner, but that wasn’t an option.

A part of me really just wants to get it over with, especially if it’s likely that my right side will need to be removed. Because I’m planning on having a family in the next year or so (via gestational surrogate, after egg retrieval), so I want to be healed and ready for a baby. That being said, if it’s possible to be fine with one ligament still remaining calcified for years, then I don’t want to get a surgery I may not need.

My ligaments have been calcified since at least 2014, and they only started causing issues this year. But I think that might be because I fell and hit my left side of my head when I had Covid on Christmas 2021. Pain then started in Feb. 2022 in the gym.

Thank you so much for your insight :blush:

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Also, positive update!

Yesterday, for the first time since pre-op, I went swimming. Pre-op, my left side would be triggered from using my arm to do the frog type swim. But yesterday it was almost like normal! I was so so grateful, despite the kidney stone pain (which was why I went swimming in hopes of helping the stone pass). Also, my right side didn’t hurt (the side where I still have the calcified ligament) either really.

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@SRR - I’m really sorry about the kidney pain. I hope that passes SOON! What great news about swimming! You asked if the right sided ES pain could be crossover from the left. That is certainly possible. People do live w/o pain even w/ one elongated styloid. I think you should make the decision about surgery after you see what your CT scan results are. You can request that the radiology lab add some 3D images to your CT slices. Mine did it w/o being asked. If they won’t then there are free 3D slicer apps online. Some are better for Macs & others for PCs so if you need that info, please come back & ask after your CT appt.

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Great that you’ve been able to go swimming without pain!
It’s difficult to know whether the pain is cross-over or pain from your right side- unfortunately the only way to tell would be to have the surgery…Some members have had cross-over pain, and probably the majority do find that the second side ramps up itself after surgery. Whether that’s the slight shift in the neck structures after the first surgery who knows…
We have noticed that hormones can make symptoms worse too, so you’re not alone with that. :hugs:

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Thanks about the kidney pain. Unfortunately it’s still there, but thankfully not quite as strong as it was. I’m hoping that if it’s a stone again, that it will pass soon.

Also thanks about the swimming! It was truly a wonderful thing! I may try a very light workout at the gym—just to test things out. But I don’t want to upset my left (2 month post op) side. So I’m thinking maybe only doing things with legs. Or maybe try the Pilates reformer. Something gentle. But I’ll be curious to see if my right side starts hurting.

Just to clarify, in my case, it’s my SHL that is calcified. My styloid process was left in place on my left and just my SHL was removed. So on the right it would be my ligament removed and my styloid trimmed back if needed. Do you know if anyone with ligament calcification only have been able to keep a calcified ligament? In your case, did your remaining side pain ever go away between your surgeries for a week or more? I can feel occasionally still this feeling of almost a poke(?) as if where it probably attaches to my styloid process I can feel it maybe under the right jaw area. So for me, one concern is that since my left was seemingly activated so easily after having both sides calcified since 2014, I’m worried one wrong move and I could end up in a world of pain on my right side (remaining side). So another question, does anyone on here ever preemptively remove their remaining side to avoid future trouble, even if it’s not currently bothering them?

I will request that about the imaging. I have a Mac. My husband has a PC. But neither of us have a disc drive. Which program on a Mac is best so I can practice with my first scan? Also, do you all use disc drives or have them put the scan on a usb?

Thanks so much!

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Thanks, Jules! I was very excited to swim without ES pain (now just to not have the kidney pain).

My 2nd (right) side did seemingly act up, but now that my left side has calmed some 2 months post op again, it’s as if the remaining side isn’t acting up. But I do maybe still feel an occasional poking type feeling up under right jaw.

My concern is if I leave it in there for now, it will end up causing issues sooner rather than later. But I don’t know if it’s normal or ok to get it removed if it’s not currently causing obvious issues. I’m wondering how common it would be long term to have a heavily calcified ligament remaining without any issues. If I’m going to need it removed at some point, I’d rather get it over with. Unless it’s way better to let my left heal longer. But that’s my big issue is I want to get back to egg retrieval, but ideally without having to worry about ES issues arising during the egg ret cycle (hormones fluctuating etc).

So interesting about the hormones aspect. I will see soon if my remaining side is triggered by hormones.

Thanks for all this insight!

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My right styloid came out first, & I had about 3 weeks of relatively pain free days from the left one after my first surgery. I think that was because of the post op prednisone & percocet. Once I was more or less done w/ those, the pain came creeping back in & got progressively worse over time. I did have better days & worse days but usually had some sort of symptoms even on my good days.

Your concerns are valid about making a wrong move & having the pain on the right flare up again. It’s the unknown that’s so maddening w/ ES & having to make a decision about removal vs. living w/ symptoms.

I think most of our members who’ve had bilateral ES surgery have done so out of necessity. I know of one person who did the preemptive thing & ended up in worse pain afterward, partially because not enough styloid was removed & possibly because she had underlying issues that flared up from the surgery stress & those are what caused her poor recovery.

I don’t know the answer regarding getting a CT on a usb drive. That would be one to ask at the radiology office. I wish they would send soft copies as that would be helpful, too, but giving it on a CD is the norm.

Here’s a link to the program suggested on our site but it’s a bit old now. I can’t remember the name of the one recommended for Macs in particular. Hopefully someone who knows will reply.

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Interesting. Thank you for sharing this. It sounds like your remaining side did continue to act up. It’s very strange for me to not have obvious daily pains on my right now for almost a week (?). I still can feel a pressure (or like a poking up under my jaw) in there at times, and with certain movements, but I don’t know if that’s worth it to get that removed.

It is maddening. I am very stressed about whether or not to postpone my 2nd surgery if I’m not having much in the way of pains/symptoms on that side at the moment. I’m still confused about how crossover pains work, and if my left side was/is causing right side (remaining side) to hurt more than it would once my left side heals more.

That’s certainly not encouraging to hear about the one woman who had worse issues after having the 2nd side out preemptively. Was it at least calcified or elongated? In my case, I know the right ligament was nearly fully calcified on my March CT (my left that was removed was worse and the one with worse pains). I just am so unclear as to whether or not you should try to live with it in your neck, knowing it’s probably restricting movement, and that with any fall or injury could land you in a world of pain, and then have to wait on a surgery. And in my case, needing to do more egg retrieval cycles and hoping to start our family sooner than later, and ideally without an ES surgery needing to happen close to that time.

Do you happen to know of anyone who has had just their SHL removed (with styloids left) like me? And then had the 2nd side removed, too? I can’t seem to find how to narrow that down in the search.

Thanks for the info on the CT. I will look into it more.

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Look up @SewMomma. She had only calcified ligaments & had both removed w/ GREAT results.

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Thank you! Will do!

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Hi, I think your doctors need to give you clear advice about whether it’s only your ligaments or your styloid too that’s the issue. I hope they can do that for you soon. Ifs it’s only ligament then fine to go ahead as planned. But if it’s your styloid too you need to know that as it’s logical to do both in one go. You don’t want neck op twice. Also important to decide if you have normal ES or VES, as in latter case skull base styloid op is needed. As for crossover pain yes our bodies do refer pain (one of my least favourite things, along with fluid & swelling to heal). Often it is in opposite area to where source of pain really is I find. In physics everything has an equal & opposite force & I think our bodies obey that rule too. Hope your medics give you the clear advice you need soon. Maybe write down qus you want them to answer. Good luck D

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We tried transferring to a USB from an old DELL w a disk drive, then taking t0 to my MAC. Had major problems. Ultimately ended up using the old DELL to upload to the DICOMReader online. It was slow but it worked. Alternately might be able to just buy (or find used) an external disk drive for the MAC and try that way?

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Thank you for this info! I did buy an external disc drive for my Mac, however, I can’t figure out which program to put it into 3d. Thankfully the tech at the imaging center added some 3D images for me on the disc when I asked. But I’d still like to find a good program to use so I can look at some of my older imaging.

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Thanks for your insight. My Dr. definitely thinks I should get my right ligament removed. I’ve already had my left ligament removed by him on 7/18 and it did help a lot of things (I’m still having things with healing of course). My plan now is to have my right ligament removed by him on 10/10 which is clearly an issue being nearly fully calcified (if not fully). Then I’m going to give it a year. I’m quite certain I have classic ES. And oh, I have SO many questions. Too many–too many to have them all answered. But I will be narrowing them down for my pre-op this coming Tuesday as we review my latest CT.

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