Long delayed post-op (Doctor Hackman) update

Hey y’all. I am so sorry I haven’t posted an update since a few days after my surgery back on January 8th. I have been dealing with healing, over here! =)

Healing, however, is going well - while not at all linear. After spending a week in a hotel in RDU with my mom post-op, I came home to spend a week with my sibling (whom stayed with me and took care of my pets and me). Two weeks off of work, then back to work. After being back to work (I work remotely) for a week I did in fact fly from NC to CA for my company’s annual retreat (three days long, Palm Springs) like I mentioned I’d hoped to be able to do. It was difficult but not as difficult as I imagined it would be. I flew fine, I managed being in CA fine, and I flew home fine. I was VERY tired, though.

Then it was back to work as normal, continuing to heal, and resting as much as possible. I did have to go to the emergency department just a couple of weeks ago for the first time since Thanksgiving week. Pain crisis, extra swelling in the neck/face (both surgical sites). The ED doc determined no acute emergency and then focused on pain and nausea. We decided my gastroparesis flareup that had me puking multiple times a day for several weeks resulted in the sudden onset of excess swelling (that had been steadily going down) around my surgical sites, leading to the pain crisis. I was heavily medicated until my pain was managed and sent home the same night.

I have noticed DRASTIC improvement in many symptoms from the ES on my right side since surgery and this makes me look forward to getting the left side done later this year so I can hopefully be rid of the symptoms entirely. I am still getting lots of pressure in the bottom of my head/scalp, trigeminal neuralgia in both sides of my face, and jaw pain/TMJ issues as well as neck and face pain on both sides of my face. However, on the right side (surgery side) it’s clear the pain is due to healing from surgery while on the left it’s clear the pain is still from active ES. So that’s interesting. I am still dealing with symptoms from compressions on my left side - those symptoms are gone on my right side, and so on.

Doc Hackman still has me on IV steroids (dexamethasone) every 3 days and that’s been since Thanksgiving week. He does not think I’ll come off of them until I have the other side done surgically and then spend a few months healing, then we can taper. I cannot take NSAIDs so it makes sense, but man, I hate taking them. Lol. Other than that - I am working, taking care of my pets and enjoying the very little time my husband comes home from travel for his own work. I am tired, still sick in other ways of course (vEDS, GP, in palliative care - the usual), but am feeling very positive and much better than I was before January 8 in very specific ways. Ask me anything! I cannot seem to think of all that I might have wanted to write in this moment but questions might prompt me. Hope you are all doing well!


THANK YOU for taking the time to update us, @slekeille. You’ve been on my mind a lot lately & I’ve been praying that your healing was progressively reducing symptoms & not the opposite since your vEDS can cause unexpected challenges. I had planned to send you a PM this week to check in but here you are!!

How great that your family was so supportive & your sister stayed with you until you were more stable after surgery. I’m very relieved to know that you’ve gotten some very positive results from your surgery & that you were able to take the trip to Palm Springs. I’m sorry your gastroparesis is being such a problem though. Do you know whether that’s a symptom of the vEDS or possible related to vagal irritation by your remaining styloid? Also good to know Dr. Hackman has a long term plan to keep you comfy until your other styloid is removed & beyond.

It’s great to hear you back to “life as usual” though I’m sorry your husband is gone so much - that must be tough. I expect your pets help fill that void. What would we do w/o them?!?

I will continue to pray for your healing. :hugs:


Would you mind elaborating on the side effects of the steroids?


Hi! I am sorry for worrying you. I still plan to tell my surgical story/hospital stay story etc. but even imagining trying to type all of that out right now is still daunting. I spend 40 hours a week at my computer typing for work, so I am depleted when it comes to tech/communicating online by the end of the work week and don’t have a ton left for this sort of thing right now, which does make me sad. I knew I had to get some sort of update posted - I am fairly certain I’d still not have found a surgeon or gotten help if it was not for this forum and I appreciate y’all beyond words.

My gastroparesis has been an issue since I was a teenager, though I was not diagnosed officially until my mid 20s. It’s hard to tell if it’s a comorbidity of vEDS (very common) or ES (also common). It has not improved in the slightest since surgery so I am less inclined to think it’s ES related, though.

My pets absolutely keep me sane when my husband isn’t here - though, taking care of them all on top of the house, work and my own medical needs can be a lot!


Mostly superficial. Moon face, moon body (that’s not a phrase lol - but I am making it one). I am retaining a lot of fluid and do not “look like myself” because of the steroids at this point, which has been difficult. I dose every 3 days via my PICC line and for the first 24 hours or so notice an increased resting HR. Otherwise I am very lucky in that they aren’t really causing any bad side effects, which is presumably why Dr. Hackman is comfortable keeping me on them so long term.


Thanks for sharing this about steroids. Last week I had to take a “large” dose of prednisone (160 in 16 hours) and my heart rate was crazy for the rest of the week. I usually have bradycardia, 45-60 at rest, but it went up to 85-100 bpm. It wasn’t a pleasant experience at all, so I can just imagine what it means to be on them all the time…


Thank you for your update, and so pleased that you feel the surgery has made a difference…a shame that you’re still in pain, but hopefully the second surgery will make even more of a difference. I take my hat off to you, coping with your vEDS, ES surgery, working & managing without your husband most of the time. Superwoman springs to mind! :hugs:


I will say that I personally cannot tolerate Prednisone or Prednisolone, which is why I was put on the Dexamethasone instead. It’s possible that were you to be on a different steroid (if the need arises) that you’d tolerate it better and def worth discussing with your doctor.


I am certainly not SUPER WOMAN! :rofl: I think that anybody would do what I do if they had to. I wouldn’t choose to be alone almost always, working full time and focused on everything but my health and myself so often, but it’s life, you know? Most people do not have the resources to survive without working and/or relying on others and for me, I have to work. I also have a fantastic support system (though most of it is virtual/phone from family and friends far away - emotional support is SO important so I am grateful). My best friend and her family live two blocks away which helps a lot on bad days, but I don’t like to call on her unless I need to for fear of always being “that friend.” Lol. I appreciate the kind words, though. Sometimes it feels good to be told I’m doing a great job - I am so tired!


Well, I’m disagreeing with you! Superwoman you are :joy:

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You’ve been on my mind. I’m glad to hear your healing is progressing. Thank you for updating! I look forward to hearing more about your experience when you have the extra tech energy. :slight_smile: Glad you’re taking care of yourself, that’s the most important part.


Yay!!! I was actually just thinking of you about two days ago :blush:. So happy to hear you see such great improvements. It is so promising to know that you will be even better once you get the second styloid removed. Keeping you in prayer. :hugs:


Hi, I just wanted to add some thing and hopefully give you some hope! Vagus nerve regeneration does happen, albeit slowly. So it may just be too soon to tell if removal of the styloid will help the Gastroparesis. If the styloids have been compressing the vagus nerves, which very likely they have been based on the location of things, then you should start to see some improvements in GP between 9 and 18 months. I believe our bodies are always trying to heal. So I even go beyond that conservative estimate of 18 months to say that even years later you can see maximum healing.


I really appreciate the time you took to offer me this reassurance. I’m sure that it will also offer some much needed hope to others that might read this over the years.

For me, it’s very unlikely that I will ever recover from/not have GP. I actually have global dysmotility. I also have CIPO (chronic intestinal pseudo obstruction). My colon is absolute trash along with my stomach, and I have severe malabsorption issues along with general issues hydrating. This goes for meds, food, fluids and all. I am constantly dealing with malnourishment, iron/ferritin deficiency, malabsorption, dehydration etc. which is why I rely on a J-tube for nutrition/hydration and still (hopefully not much longer) a PICC line for the same + iron infusions, IV steroids and so on.

I’ve been dealing with most of these issues my entire life (I’m almost 35). I have vEDS (vascular Ehlers-Danlos Syndrome) and two types of neuropathies (small fiber and autonomic; neuropathy in general is a common comorbid issue with vEDS and all EDS subtypes). GP is also a common comoribd of vEDS, and so is dysautonomia (which I also have). So, triple whammy re: vagus nerve issues: vEDS, dysautonomia and Eagle’s Syndrome + neuropathies and GP. That’s essentially my physical health gauntlet - along with endometriosis (lmao, how lucky am I? - endo was my first “big” diagnosis outside of CIPO and PsA).

It’s unlikely that, even if the compressions from ES were/are a contributing factor to the GP, that the GP is being caused by the compressions/ES. I cannot mentally or emotionally afford to tell myself there’s even a possibility I will recover from GP after finally doing all of the hard work to accept it as part of my forever-life in therapy and with my medical providers, adapting to the idea of needing my J-tube to survive for the rest of my life, and most currently coming to terms with my colorectal surgeon that I very likely need an -ostomy sooner than later (something I have said “no” to in the past, much like I did my J-tube, but am now wrapping my head around as an improvement to my quality of life and a way to rid of the constant and ever-growing risk/concern for colonic rupture/perforation).

All of that said - there is certainly a chance I could see improvement to my GP symptoms because of this, and in general, over time. GP comes in flares and periods of lesser symptoms as it is. Sometimes I can eat soft foods orally and keep most of them down. Sometimes I can eat some (very specific and within extreme dietary limitations set in place by my dietician) normal, full solids orally and keep most of them down. Sometimes I have weeks-to-months-long periods (flareups) where I cannot tolerate anything but clear liquids by mouth and will vomit multiple times a day, lose tons of weight in a short period of time and then have to work for months to regain and maintain again. It’s rough, but I am used to it now. There’s a good chance my GP issues alone (i.e. only the symptoms related to my stomach, but not my colon or small intestine) could improve for a long stretch of time. I will always need my tube because my malabsorption is not just related to my GP and I will never process medications/break them down on my own the way I am supposed to. I will also never be able to properly keep myself hydrated with oral fluid intake. So, the tube will remain part of me forever - and that’s okay. But, if I can get some symptom relief over time - that would be so amazing. We shall see! (You didn’t know any of this when commenting because I chose not to go into such great detail about my medical history until now. I truly do appreciate your words and don’t want you to think otherwise! Just wanted to explain why the info might not apply to everyone, particularly me, in this case.)


Thank you sooo much!!! :smiling_face_with_three_hearts:

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I knew your health situation was challenging but not “how challenging” @slekeille. You are even more a super woman for all you deal with & do it w/o complaining. I understand that when it’s been a way of life for you for several decades, it’s not as big of a deal as it seems to someone like me whose jaw dropped as I read about all your body dysfunctions & challenges. I am sorry for what you deal with but am so encouraged by your fortitude & effort to live normally. To your great credit you face each challenge as it arises & make the best of your situation. What an AMAZING example you are to those of us who grumble about much smaller health or life challenges. Thank you for sharing your story in greater detail. You are an inspiration to me. :gift_heart: :hugs:


I really appreciate your kind words, but please don’t compare our suffering! There is no need for that as it does not improve anyone’s situation nor does it result in any sort of true reward. In the end, everyone in this forum is suffering and most quite a lot. Sure, I might have a condition that is fatal and eventually, that’ll come full circle for me and that’s part of the way my story as written into the stars. I can’t do anything about it, and neither can you, and that’s a bummer. For certain. It sucks.

But all that everyone here is dealing with really, truly, outright sucks! And comparison is the thief of joy. No matter what, in any given moment that you (general “you”) might complain about a health issue, physical pain/discomfort and/or other issues - that means that it’s bad enough to distract you from everything else and entirely valid and just as important as whatever I am going through or anyone else with “more serious” health issues is going through. I am not of the belief that one diagnosis is “worse” than another. Yes, some are objectively more serious, more life limiting, more painful when presented entirely factually and logically but when it comes to the way we subjectively experience our suffering and pain that doesn’t hold much weight. What matters is the person behind the experience, you know?

I will always make sure to tell anyone that says, “Oh, I shouldn’t be complaining to you when you have X going on,” that they are wrong. Complain. Talk it out. Scream. Yell. Cry. And when you do? It’s just as valid as when I do.


Very wise words and you are such a kind person :hugs:

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Thank you so much for your kind and brave explanation. It does help to understand where you’re coming from, and I can understand not wanting to get your hopes up. I have often said to myself hope for the best, but expect the worst. It is hard to go through life with that mentality, but sometimes we just need to mentally toughen up. I totally get that.

I think you are amazing and you have a beautiful personality that really shows through in your writing. Sending you hugs and prayers for extra strength and comfort!


You’re very well spoken, @slekeille, & I agree w/ everything you said. I should have clarified that there are things I grumble & complain about that need the perspective of your situation as they aren’t worth the breath I give them. That’s more where I was going. I rec