I had surgery with Dr Samji on my right styloid yesterday. My husband and I traveled to San Jose from Nashville. We made the best of the weekend and went to San Francisco and Big Sur.
I am doing much better than I expected. My pain and swelling is minimal. It has been a bit painful to cough but that is improving. My throat felt swollen when I got up this morning but I immediately took my prednisone and pain medication. I still have my bandage on so I haven’t seen the incision. I don’t know if I am ready to see it yet. Dr Samji and his team were awesome. From my experience so far, he is an incredible doctor and surgeon. He is very thorough. I have little dots all around my neck and shoulders where they monitored my nerves during surgery. I don’t know how long my styloid was but he did tell me it was oddly shaped after surgery. I will know more after my post op appointment on Friday. Right now I feel like everything has been best case.
A huge congratulations for being on the other side of surgery! I’m so happy for you that this is the start of a new beginning for you!!! Thank you for letting us know how you are doing! Will you be staying there for a few days or traveling home soon? I so glad to hear about the good experience you have had thus far and will continue to keep you in my thoughts!
Yes, we are staying till my post op on Friday then we fly home. If all goes well with recovery from this surgery we will do the left side in late July or early August. Dr Samji said we will make that determination at my 6w post op. He doesn’t want to rush anything. I am so incredibly happy that I found him through this site!
Just wondering, but did you see any doctors in Nashville. I just left an appointment at Vanderbilt with ENT cancer surgeon. He is going to remove my right styloid in one month. It is hard to know what to do.
Thanks
@Cody Yes, I did. I actually saw a Dr at Vanderbilt. I felt like he was dismissive and I just didn’t feel comfortable with him performing the surgery. I wanted someone well experienced in Eagle Syndrome. I had a completely different level of comfort with Dr Samji when I spoke with him. I felt like it was worth the travel cost / etc. What are your concerns with the Dr you are seeing in Nashville?
@Cody & @meregehrke ~ You might want to make your discussion a private conversation. One or the other of you can click on the screen name (of the other person) or avatar above a post & that will take you to a place where you can discuss your doctor experiences in greater detail than on the forum.
@Ladybug Thanks so much for checking in! Recovery been relatively easy. I am back to working out and have my second surgery (for my the left side) scheduled for 8/1. Unfortunately, my symptoms haven’t improved as much as I hoped. I am still getting headaches and severe ear pain/burning. I actually have a call to discuss my pain with Dr Samji tomorrow. I tried Gabapentin for the pain but it didn’t help so I’m hoping I can talk with him about other options tomorrow.
It does take time for nerves to heal, @1speechpick gave a very good explanation in her post about her MVD surgery if you’ve not seen it- here’s a link: Update after MVD - General - Living with Eagle
There are other nerve pain meds which might help, may be worth a try? Thinking of you
I hope that after 2nd surgery, things will improve mereg. Unfortunately, i still struggle with headaches and worsening ear pain even after ES surgery (in 2020). Im now looking at compressions that may be the cause of these. Samji doesnt really look closely at these compression issues as far as I know. I have found that botox to be helpful for the headaches overall which I also get around my ear and neck. Might want to seek out a good neurologist who does these injections. They might be able to offer some other medications as well.
I had a phone consultation with Dr Samji bc of the pain this week. He told me what I’m experiencing is not abnormal. I told him I have brief times when my pain is a 6 instead of a 10+. He said this is positive and a good sign that I will continue improving. I have times when I feel completely down and out. I asked him if there was hope for my second surgery and he said absolutely; he wouldn’t do it if he did think so. He reminded me that it takes 6-9 months to heal from these surgeries. He recommended that I pursue pain management for the remainder of the process so I’m am seeing a local pain doctor on the 11th. Not ideal or what I want but my only option right now. Dr Samji told me he understood my concerns but this is only temporary and many of his patients end up needing pain management during the surgery / recovery process bc it take the nerves so long to heal. He also said he wouldn’t send me to a neurologist for at least 6m post final surgery bc of the length of time for healing. I haven’t been concerned about vascular compression bc my headaches do t match what I have read about them. Should I be? Any thoughts / comments welcome.
Recovery from surgery has been easy / just still have same symptoms as I did before surgery. Sometimes the pain is even worse. Only headaches and SEVERE ear pain. I will post a pic of my incision - only 8 weeks out and you can barely see it.
We do see often that the nerve pain takes quite a few months to heal, members have been back on a year after surgery to tell us that they’re still seeing improvements. Dr Samji is very experienced so if he’s happy with your progress then I’d be reassured. As for second surgery, again we have seen members with cross over pain, so after their second surgery they’ve seen improvements in the first side too! @1speechpick gave some good info her doctor gave her as she’s recovering from an MVD surgery, here’s a quote:
‘Nerve healing stages
Stage 1: swelling (from post-op)
The nerves become swollen from surgery. There’s too much fluid post-op and it short-circuits the nerve signals. As the swelling starts settling down, the nerves fire better. This period lasts about 2-3 weeks.
Stage 2: “Schwan cells that wrap around each of the nerves” (I have no idea of Schwan is spelled correctly!!). The Schwan cells around the nerve will die back when the nerve has been injured or manipulated, but then the Schwan cells will resprout and grow back around the nerve again. This phase takes 3-6 months. The nerves start firing more efficiently once they have efficient Schwan cells. (my doctor referenced this as being part of the myelin sheath regeneration
Stage 3: The nerve cable has to resprout all the way to the end of the axon. This is about a one year process.
This was the layman’s version my doctor explained to me. It’s pretty basic but at least it helped me to understand the healing timelines better. Basically anything that improves initially is only due to swelling. The real nerve regeneration begins to improve within 6 months of surgery but can continue for up to 18 months after surgery (and sometimes a little longer).’
I hope this will reassure you too- thinking of you, sending you a hug & will pray that you do find your pain decreasing
Good advice Jules. Crossover is not uncommon when you still have other styloid in.
The nerve healing explanation is really helpful. Glad you are seeing a pain specialist. I hope that will help take the edge off. Have you ever been diagnosed with migraines? TMJ? I know that I have alot of tight muscles in my neck and sometimes I feel like something is pulling on the inside of ears making them hurt. When we have so much pain in our head, neck and ears, our muscles and ligaments tighten creating chronic dysfunction. Massage can be helpful, nerve meds, muscle relaxers…dry needling. Pain doc should be able to address all this.
I don’t have migraines or TMJ. The headaches began after the ear pain. At first (after saying it was silent reflux and not seeing improvement with multiple treatments) the doctors thought it was TMJ. I saw multiple dentist / oral surgeons / and TMJ “specialist” - we tried multiple mouth guards and even arthrocentesis - still with no improvement - not even a little. It wasn’t until I went to a new dentist (still chasing TMJ solutions bc I couldn’t figure out what else it could be) that the dentist saw the elongated styloids in a xray. I know I am not alone; it has been such a frustrating and anxiety ridden process.
Two of the ENTs I have seen have totally downplayed and dismissed ES. I am so happy I found this site and support here. I will be happy to have help and support from a pain doctor. I don’t want a doctor who simply puts me on narcotics. Although Dr Samji said this would be necessary. The only nerve medication that I have tried is gabapentin and it did not help. Dr Samji said that I would need to see a neurologist to explore other options but he wants to give my nerves time to heal before we pursue this. I may look into botox for the headaches.
Mergeg,
You sure have run the gamet for TMJ treatments and appears exhausted that route for sure. Ive been down that road myself and sometimes feel like the whole mouthguard thing is just a moneymaker. I just went to a new oral facial pain center recently and the doc explained that mouthguard and appliances are low on the list of what he considers to be effective treatments. Ive never been a fan of gabapentin myself. Hopefully neurologist/pain doc can give you an rx for another type of nerve med to get you some relief.
Praying for swift healing 
. Happy healing