I had the opportunity to speak with Dr. Hussein Samji this morning as I am scheduled for surgery with him the end of June. He told me that he has now done over 50 procedures for ES, either removing the styloid process entirely, or revising previous procedures. He said that he has refined his surgical extraoral approach from what was originally a 2 to 2 1/2 hour procedure with an overnight hospital stay to a 1 1/2 hour procedure done on an outpatient basis. I feel very confident and comfortable with my decision to go with him. His office staff seems to have scheduling out-of-state patients down to a science.
I flew from Texas to Cali and thankful I chose Dr Samji. I have no regrets, he removed my left 11/2013 and right 3/2014 external by neck, not oral. The outpatient surgery center staff was very nice and are used to us…
Also, his stitch work is great. After surgery, neck will be swollen so just make sure to elevate head with wedge pillow. I bought mine at bed bath & beyond. Keep ice pack on surgical side will help.
Thanks so much for this information Amy.
Hi Alaska Eagle, did he tell you what to expect after the surgery? I called the office and they indicated that he wants his patients to stay in the area for a week after surgery. Is this the same? Can you also tell me how the process went for you? Ie: sent CT to Samji, scheduled surgery, then phone call? Or did you have a previous call with him?
Excited to hear how your surgery goes, best wishes!
StrongBird, yes, that is it exactly. Surgery on Monday, post-surgical visit on Friday and then clear to go if no complications. I asked about recovery time and he indicated that most of the post-surgical pain is from swelling in the neck which he addresses with steroids. He indicated I should expect to have pain for 7-10 days and that it is reasonable to plan to go back to work (I work in an office) after two weeks total recovery.
I felt strongly about getting the procedure scheduled before the end of June so things went as you've imagined. I sent the medical records along with the 3D CT scan disk and once he had a chance to review them he told his office staff to go ahead and schedule the surgery slot. Although I've seen enough positive testimony on this site with people who have had surgery with him to feel comfortable proceeding, I requested a phone consult as well before purchasing my airline tickets, just to talk to him and ask what questions I had about his own approach and thoughts. I was completely reassured and confident after having spoken with him. He seems a very caring and compassionate surgeon and his track record with the procedures he's done (including revisions) is impressive. He told me he will not do the surgery to remove an elongated styloid process using an intraoral approach and that he does not believe it is even a safe procedure. If someone prefers intraoral - he will refer to another physician. I happen to agree with him on that point.
Thank you Alaska Eagle!
Thank you for all of this information! I feel sooooo good about having an appt. with Dr. Samji this month. Thanks again!
My husband wants to send dr Samji a disk for our son after reading about how this works. He picked one up yesterday & I am thinking of calling next week. It sounds great…if anyone has stories of this surgeon that are not good, please share so that we can make an educated decision & know all possible outcomes before we go that route. But I have to say that one man who has done 50 of these seems amazing. Everyone says to get a surgeon with experience.
Alaska Eagle, I am wondering how your recovery is going!!! Let me know when you have the energy and time :)
Ear Mom, Samji told me that he is in the 50-60 range with his Eagles operations. For about 85% this has been their CURE. The rest still have some symptoms, so they experienced an incomplete cure so to speak. He told me that one person says that things are "worse" but he told me that that particular patient did not/would not talk to him about it, so it is secondhand interpretation. Greater than 25mm is his surgical cut-off line.
After Dr. Cognetti turned me down, I found Dr Samji. Dr. Samji told me he was willing to try {even though my crazy symptoms scared him.} I will always be grateful to him for that.
Heidmt, if you don’t mind sharing, what were your crazy symptoms? Mine are rather “crazy” as well. My doctor has agreed to do surgery, I’m just waiting on insurance to clear. When I lay down or sit down more at a 90* angle, my neck and ear go crazy and it feels like I am about to blow a gasket! I have never had a seizure, but it is climatic tremors and vibrations in my neck and base of skull. I can hear a BOUNDING pulse in my ear. Thanks, Lizajane
Hi Lizajane, my pain went down into my chest.
lizajane said:
Heidmt, if you don't mind sharing, what were your crazy symptoms? Mine are rather "crazy" as well. My doctor has agreed to do surgery, I'm just waiting on insurance to clear. When I lay down or sit down more at a 90* angle, my neck and ear go crazy and it feels like I am about to blow a gasket! I have never had a seizure, but it is climatic tremors and vibrations in my neck and base of skull. I can hear a BOUNDING pulse in my ear. Thanks, Lizajane
Dr. Samji sounds amazing. I think it's great that he has so much experience and that you are sharing that information here. I traveled to Dr. Cognetti for surgery, and I still think that anyone planning to have surgery would be smart to travel to either Dr. Cognetti or Dr. Samji. It's worth the travel for the experienced (and talented) surgeon.
I guess I'm one of the 15%. Dr. Samji said he took out all but 1 mm on the left side, but I was still experiencing pain a year later. My local doctor ordered a CT scan, and it turns out there is about 2 centimeters of the styloid left. So it appears that a significant segment was missed in the surgery. I sent a copy of the CT scan to Dr. Samji, but haven't gotten a response.
Jayde said:
Samji told me that he is in the 50-60 range with his Eagles operations. For about 85% this has been their CURE. The rest still have some symptoms, so they experienced an incomplete cure so to speak. He told me that one person says that things are "worse" but he told me that that particular patient did not/would not talk to him about it, so it is secondhand interpretation. Greater than 25mm is his surgical cut-off line.
Alaska Eagle - How are you now? How did the surgery go? We are still waiting for a date for my son's surgery. They are hopeful they can move forward sometime in August.
heidmt, Thank You for sharing your story here… and 1 yr. later WITH pain & a 2cm styloids? Oh my, that is very tough.
I almost expect to be in the 15%. Of course, who knows, but I have had issues 2 decades +, so my patterns are seriously ingrained.
Where is your pain nagging the most for you at this point ~ is it chest pain on 1 side?
I am also interested to hear what Dr. Samji has to say to you if and when he gets back to you if and when you ever feel up to sharing.
Best Wishes, Jayde
Everyone is different and reacts differently so I think it is important to precede this report of how surgery has been for me with a caution that no one allows my experience to establish your own individual expectations. We all have different lenses through which we view things, each have our own unique form of this syndrome, and all have different pain thresh holds and rates of healing.
Based on the research I've done, I would only recommend an external approach and would never consider an intra-oral approach. When I arrived for my pre-surgical exam, I was told the length of my styloid was under-measured by the radiologist who reported on the 3D CT scan, and that it was actually a little over 5 cm – so no matter what, I was pretty sure I’d end up better off without it. The surgery itself was a piece of cake for me – a walk in the park. I received excellent care from the ambulatory surgical center and from the Dr. and his team. I had surgery on a Monday at 8:30 a.m., the procedure took about 2 hours, and I left about noon. We stayed in an extended stay until Friday and then flew home after a post-op exam. I was doing so well and my husband was so stressed out the day I had surgery that in the evening after getting settled, I cooked dinner for him and put him to bed! We’re laughing about that one.
Post-surgical meds were fully adequate and I was very comfortable throughout Week 1 - I slept elevated and iced my neck regularly (20 min on /off) throughout. All that really did help keep me comfortable by keeping the swelling as minimal as was possible. Popsicles and lots of rest topped it all off. I had plenty of energy and got out a bit each day. As I said, we stayed in an extended stay until Friday and then flew home Friday evening after a post-op exam.
After returning home the course of decreasing steroids that was part of the pain management came to an end around day 13. Dr. advised it is par for the course that the surgery itself will flare up all your symptoms because it’s so insulting to all the nerves and muscles to be moved around and stretched as they are during the procedure itself. I found this was helpful to understand and in my case, also quite true. When the first course of steroids ended around day 13, I got pretty uncomfortable but I returned to work full-time on day 14; so I asked if another course of decreasing steroids to calm the muscle and nerve pain so I could get through a full day of work) might be appropriate and Dr. agreed. I’m not thrilled about taking them but it is a way better option in my mind than opiates. So now (day 27 or 28) I am finishing up Round 2 of steroids, take ibuprofen when needed, and am relatively comfortable. I’m hoping it stays comfortable when Round 2 ends in three more days.
The incision itself is healing beautifully and I’m impressed with how nicely it was all stitched. I’m still very aware of it, the site is tight and sore, a bit numb in spots and itches as it is healing. I’ve had a myofascial therapist work on the muscles of my neck to contribute to their recovery from the insult of the procedure. As I was told was a possibility, I did sustain a stretch injury on the facial nerve that operates one side of my lower lip so it is still numb and doesn’t work the lip completely yet. I still have transient and intermittent nerve pain and headaches but not nearly as persistent as pre-surgery. I get sharp pain just under my ear when I first take a bite of food but it goes away rather quickly and doesn’t happen if I remember to take the bite on the other side. I’m not sure if that is just surgical soreness or something else. Dr. advised it is realistic to expect a 4-6 month timeframe for everything to settle down and recovery to be complete.
One of the medical professionals who helped care for me told me that she finds Eagle’s patients are very fearful about seeking surgical resolution and she encouraged me to let you all know how positive it really is in the larger scope of things. I agreed with her perspective – it is the treatment of choice for a true case of Eagle’s. A mini-craniotomy is a major surgery and it is helpful to undertake the challenge with realistic expectations and an understanding of the trade-offs. Compared to the pain of Eagle’s Syndrome itself – like I said, the surgery was a walk in the park. The pain syndrome isn’t automatically gone post-surgery and recovery takes time. So, I’m still in a watch and see mode but feeling grateful for the opportunity to have had surgery and zero regret.
Thanks for being there and sharing your stories. We can all contribute to helping folks find the care they need by sharing information about our experiences.
Alaska Eagle - Thanks for your post. It helps me understand what is to come and set my expectations accordingly. I am also glad to hear that you have real improvement so far and I pray that all of your remaining symptoms go away over time as you continue to heal. As of today, we are still waiting for a date for my son's surgery. Hopefully, we will have a date by the end of the month for surgery sometime in August.
Hi Jayde, Dr. Samji turned me down for another surgery to get rid of the rest of the styloid that's left. He said it would be too dangerous. I'm not sure exactly what he meant by that.
Jayde said:
heidmt, Thank You for sharing your story here..... and 1 yr. later WITH pain & a 2cm styloids? Oh my, that is very tough.
I almost expect to be in the 15%. Of course, who knows, but I have had issues 2 decades +, so my patterns are seriously ingrained.
Where is your pain nagging the most for you at this point ~ is it chest pain on 1 side?
I am also interested to hear what Dr. Samji has to say to you if and when he gets back to you if and when you ever feel up to sharing.
Best Wishes, Jayde
Heidmt,
So sorry you're still symptomatic. The details that informed the doctor's decision to leave some of your styloid in place and most importantly, why he believes it too dangerous to remove would be important things to understand. I'd be inclined to ask the questions. Understanding what he meant may comfort you.
I've had the experience that different medical professionals interpret images differently and 1 cm difference between the about 1 cm you were told was left intact and the 2 cm a subsequent radiologist reported is not uncommon. If you think about it, 1 cm is about the size of your baby fingernail.