I haven’t been on this site for over a year but I had my first (left) styloidectomy in Dec. 2019, with Dr. Samji. He reported complete styloid removal, including some surrounding skull base, as well as removal of both of the calcified corresponding ligaments. I was then scheduled for my right side styloidectomy o
in late March, 2020, but it was canceled due to Covid. This past year has been horrific with my symptoms, both from nerve compression but also significant jugular compression and the whole host of nightmare symptoms that accompany both of these. I have been able to get fully vaccinated and have rescheduled my right styloidectomy for mid-May. However, I recently had new CT imaging and was shocked to see that I still have bilateral elongated styloid bones!
My issue is with what my operative report and pathology report say vs. what my imaging shows post-operatively…both can’t be true. My styloid bone on my left side IS shorter now, but the shape of the smaller styloid is exactly as it was before, so there is no way this is regrowth. This is a shortened styloid bone.
I don’t know how to reconcile this lack of accurate reporting with trusting Dr. Samji again. I trust he has extensive surgical experience with ES, which is why I have traveled to him for my surgical care in the past, but I expect to be told the truth about what is done inside my body when I’m unconscious. His medical assistant has come back with “unfortunatly, we have now seen a couple of cases of calcification of scar tissue that can look just like styloid.” There is NO way that is what I am seeing.
Anyone have advice or a way to reassure me that getting on a plane in one week to go back to him is what I should do? The thought of trying to get in with another experienced surgeon and waiting much longer for relief on my right side is overwhelming. I am barely functioning at this point.
So sorry that you’re in so much pain & have had to wait for so long to have your 2nd surgery…& then to find that out as well…Obviously I don’t understand it any more than you do; many members have had successful surgeries with Dr Samji & he is one of the most experienced surgeons we know of…from what others have said about Dr Samji, he can be understandably cautious about removing too much of the styloid process if there’s danger of damaging nerves, so occasionally can leave a stub behind- maybe that happened with you, but that doesn’t explain the post-op report. We have had quite a few members with re-growth recently, some quite quickly after surgery, so it is possible, but then you say yours looks exactly the same shape as before…
Maybe you could see him before your second surgery to ask him directly? If you try seeing anyone else, it will be a much longer wait for you while in pain, plus who knows if covid could flare up again later in the year…but I understand you don’t feel so confident with him now, it is a dilemma, I’m sorry I can’t give you any answers…
Here is my split screen of post-op vs. pre-op. That is NOT calcified scar tissue on the left, that is a portion of my styloid left behind. Which would be fine, if I was told that is what was done. I completely understand the risks that a styloidectomy presents, so erring on the side of caution and preserving my jugular and cranial nerves is of course the way to go. It’s just not what my report says, nor is it what we were told was done during surgery.
I already have other neck issues and TN and ON, so ANY surgical intervention in my neck/face/skull area is risky. The thought of my left side regrowing wasn’t something I have worried about because I was thinking I had total removal. Either way, my right side has to be dealt with and healing has to have time to occur, before I can determine what symptoms remain from my left side, or if that ends up being a wait-and-see situation.
Thanks for being an understanding place to ask these touchy questions and to vent…amongst people who understand this crazy diagnosis.
I think it would be a good opportunity to talk to Dr Samji if you decide to have the other side done; do you get to see him beforehand? I agree that it’s hard to tell which symptoms remain when you still have one styloid in place- it sounds weird, but we have had members with crossover symptoms…
I have TN but it has improved since my surgery, just not totally gone away. Nerves can be damaged by the styloids & not heal completely, but obvs finding you still have a portion of styloid in doesn’t give you that reassurance that everything possible has bee done to improve things for you…
We’re happy for people to vent!
I totally understand your concern & doubts but want to give my perspective on the scans you’re comparing. The new CT appears to be somewhat enlarged compared to your original CT. That can give an incorrect perspective of how big your remaining styloid is. It could be as short as .5 cm but looks much bigger/longer because of the angle & magnification of the image. A styloid as short as .5 cm is virtually no styloid. It would be worth it to talk to Dr. Samji & get his view on how long your previously removed styloid is.
My radiology report measured my left styloid (the one that I was told was completely removed at skull base, plus additional surrounding skull bone, to be sure of no regrowth) at 1.7cm.
Hi Adogmom, I was wondering if you had seen Dr. Samji and had an explanation from him? I was thinking about maybe traveling to Dr. Samji for surgery (once diagnosed and approved for surgery) but I found what happened to you to be concerning and I really hope you had some resolution of this situation? Thanks for sharing this even though it is difficult, I really appreciate that!
I think it is important for any patient to be clear with your surgeon that he/she is in fact taking the styloid off at the skull base as well as removing all of the calcifications in the neck. I think many of us assume these things going in (I did) and did not have a thorough discussion about these issues at pre-op or consult appointments.
I’m told this area of the neck and skull can be a little dicey working in and nerves and arteries can be wrapped around things making surgery more difficult. Although its understandable, a portion cannot be taken off at the skull due to safety concerns, the operative report should state that and the surgeon should discuss this with you after the surgery. Any subsequent CT scans should support that as well regarding lengths taken out. If it doesn’t, then I would question the accuracy of the operative report. The length of time between surgery and the new CT scan would be important to evaluate re: actual bone regrowth vs not all removed.
I personally was able to review a cone beam CT with my TMJ doc last week that was done 1 year after surgery #1 and confirmed styloid was taken off at the skull base…at least on that side. I think it is important to have someone speak to the surgeon right after surgery to review details of surgery such as was styloid taken off at the skull base, any complications or issues? all calcifications removed? As a patient coming out of surgery, I don’t remember anything the doctor said about how surgery went. I think its important to have an advocate present or authorized person the doctor can call while all the details of your surgery are fresh in their mind.
Does doctor view CT scan before or at the time of surgery to review locations,etc? Listening to others and looking back on my own surgeries, I am asking myself what I could have done different and what more questions I “should” have asked.
Thank you for your observations regarding what a person should ask/know before having ES surgery (or any surgery!). These are all important things, & I know I didn’t consider many of them prior to my ES surgeries. I just wanted to feel better & hoped for the best. I will say having an advocate present was much easier pre-COVID19. Hopefully those days will return sooner than later.
Yes, COVID has not made it easy to have an advocate there after surgery however you can pre-arrange authorization (often a family member) for surgeon to immediately call someone after surgery to discuss details of the surgery. I have had this done in the past.
All good points. I know I was told that taking it to the skull base was the plan, but then after surgery I was informed that wasn’t possible and I believe I still have about 1.5 cm remaining. I do plan to get another CT soon to verify what was done.
Well at least the doctor discussed it with you. Another eagles patient I know of was told it was taken off at skull base and the operative report also stated that however she continued to have major problems after surgery and 6mths later a scan revealed a considerable amount left. Second and 3rd opinions indicated it was not all taken out as indicated in the operative report. The surgeon first claimed there was no problem, then claimed later it was regrowth. Other opinions conflict with that assessment and state it was only partially removed. I personally have a hard time believing (and so do these other docs) a huge amount of regrowth can occur within 6 months. If the doctor would have just said he couldn’t take it all off for safety reasons, one would understand. Thankfully your surgeon was honest and/or on top of his patients and details of their surgery.
That is very scary. I think it’s probably best to get a follow up CT after surgery just to be sure. Dr. Samji did my surgery so this thread was a bit concerning to me, but I went ahead with it anyway. Of course we don’t really know what happened until we have visible proof.
Yes, this disturbed me as well. I read the previous CT scans and reports for this person and the math didn’t add up. I don’t know if this was lack of communications and/or a doctor that is too busy and getting patients cases mixed up and it snowballed. Doctors have egos too and don’t like to admit mistakes or oversights. Regardless, there is no excuse for it. One shouldn’t have to have a follow up CT to make sure the surgeon did what he said he did. This is why I suggest all the things I have above so you all are well informed about your cases. I always get a copy of my operative reports after surgeries so I understand what was done to me. I might not always understand it but I can look up words and get a general picture of it.
I am very curious to the response Dr. Samji has to this situation. I had surgery back in September 20’ by Dr. Samji, I found him to be very descriptive about what he was going to do in the surgery. I asked how much he took the styloid back? His response to me was “To the skull base.” I then asked what that meant? To him the removal to skull base was a 1.5-1.7 remaining so it could protect the facial nerves (the job in which it is intended). Removing the entire styloid could be problematic if there is injury to the side of the head.
I am confident that during my surgery he removed the styloid back to the 1.7 as said. I have a 3D CT after surgery by my chiropractor that proves it as well. I have my right side scheduled with him in 3 weeks. My confidence in him has not changed with this thread or the original post, I am still going to see him for my procedure and I am very grateful to have him as my surgeon.
I’m glad Dr. Samji clarified for you what his definition of “removing the styloid to the skull base” means. I think we all assume when we hear that, that the styloid will be completely gone. With the recent reports about regrowth by our members who’ve seen Dr. Samji, I’ve wondered if what they expected & what he meant by skull base removal were two different things. One area I’ve found him to be a little inconsistent is with his operative reports. He sometimes tells a patient one thing immediately post op, but the operative report says something a little different. I personally had this happen. I waited 5 years post op to get my operative reports & was surprised by what one of them said, but it was too long after the fact to ask about the discrepancy. All that said, both ES surgeries he did for me were very successful, & since I’ve healed from my surgeries, I’ve gone on to lead a normal, healthy & very active life. I will continue to recommend him to our members. He is an excellent, exceedingly skilled surgeon.
No doctor on this planet has a perfect track record. We all are human & prone to err even in the most ideal circumstances, yet doctors/surgeons work with people who are often ill thus making their jobs more stressful & challenging. More often than not, their patients have good outcomes even if recovery is slow. Additionally, a surgeon has no way to predict how a person’s body will react to the invasiveness of a major surgery, & those who struggle post op because of body over-reaction often blame the surgeon.
ES surgery is generally elective because having ES, for most people, is not life threatening. That means we also must accept the way our bodies react to being cut into & having parts removed & do our best to trust that, over time our bodies will heal.
WHEW! Didn’t mean to write so much but I’ve been thinking about these topics for awhile, & your post set me to writing about them.
