Skull base physician in Baton Rouge, La

General
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I will post this in the Doctors sections as well. To avoid being long winded, I will say that I did not plan to have surgery in Louisiana as I was looking to Dr. Jason Newman and Dr Samji in PA and CA, respectively. As providence would have it. I have family in Louisiana and had reason to see a doctor in Louisiana and I was referred to Dr. Daniel Nuss, Skull base physician with many years of experience.

He is every bit as qualified and kind as any doctor I have researched and I have researched every doctor on this site before I got too ill in 2016 to continue. I also learned that Dr. Nuss just came from visiting Thomas Jefferson Hospital in Philadelphia so I asked him if he knew Dr. Cognetti. His answer was yes, they are friends. So everyone who lives down in Louisiana, Mississippi, and Alabama, Arkansas or TX. If you have EAgles, you may need a referral, but we now have a new qualified doctor.

Dr. Daniel Nuss works out of Mary Bird Perkins Cancer Center. https://marybird.org/doctor/nuss/

He is incredibly kind and honest about the unpredictability of nerves, but he is also incredibly experienced. I passed him up two years ago because of a previous contact with someone else in his group. Luckily, or as providence would have it, a doctor in Louisiana referred me to him

He does not hold strong opinions about what is and what is not Eagles. He knew about some things that I only thought might be symptoms. No promises with nerves, but he did a great 3D scan, decided, as I had hoped that he should redo the first surgery before going on to the other side. He said the styloid is shorter, but impressively thick and he had read my list of symptoms. I did not need to beg or argue with anything. He is on top of it. One of the other doctors already said he would only do the right side and not the left. I was in so much pain, I may have gone that route, but my gut told me that it could get much worse if i did that. So I was immensely relieved to meet Dr Nuss.

Mostly he wanted me to know the seriousness and the risks, because he did not want me to go into the surgery with my eyes closed. After the pain and years of suffering, I knew that I could only get worse and never better. I decided to put my fears out of mind and go for surgery. One week after my second appointment, I was in surgery and I am 8 days post op, all this since Aug 13th. I am blessed, I know this. I can have the surgery on the right side in 3 months if this one and my health continue to go well. I am counting on it to go so well that I can wait until after Christmas to do it, but depending on the nerves on the right side, I may be in surgery again as early as Dec 5.

If you are on the fence about surgery. 2 things to consider. 1. What is your quality of life? 2. Which sort of contradicts the first one. If you have had this too long, your nerves could be permanently damaged. I considered both of these. At first I waited, but I always knew that too long and the nerves can be permanently damaged. At this point, I am still not sure if one of my nerves will wake up screaming and never quit, but there has to be a point when I say. " If I do nothing, it can only get worse. " I assure you the last 6 months have been really scary for me.

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Thanks for letting us know about the doctor emma; I’ll add him to the list when I next update it. I’m glad that so far things are improving for you, & hope that they carry on enough for you to have that next surgery done soon! :bouquet: :hugs:

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Emma!
So glad you found someone close. Hoping you feel well enough to post some about your recovery thus far. What has improved, what hasn’t…maybe worst pain days verses the others. I am also curious about scans vs what the surgeon actually finds when they get in there. I’ve read at least one report that the SPs were much larger than shown on the scan.
Did you have any nerves or arteries being compressed?

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Kize6159.
Today was a step backwards. I could not dlerp last night and woke to have pain all around the skull into my shoulder. No pain meds other than tylenol and small amounts of Xamax. This is day nine.
I have questions for anyone who might know.
First, my incision is large and wraps around the bottom of my ear from front to back and down to the hyoid. I have seen this incision posted. It is fine, but my entire ear and earlobe are numb and swollen. No pain, or infection, just deformed looking. I ecpect it is normal,but feels weird that my ear feels in the way? Any comments. More than this, I find that I must use my wedge pillow standing up against the headboard,not down on the bed and add 4 pillows and sleep sitting full up. Otherwise, my skull hurts. I have several very tender to touch spots, around the ear where I need to put my glasses, one at the temple,one on the skull in the occipital area. I assume this is pretty normal given the main nerve involved is the glassopharyngeal. Today, I have been unable to allow my skull to touch even the softest pillow without pain in my skull, and down into my shoulder and arm. I hope this pain is only temporary. Also, I realized just this afternoon that I had rearranged my pillows with the wedge lying down last night and all day those tender spots screamed. I took imitrex for my headaches, my tylenol and extra blood pressure med. I basically ran through everything that I am allowed until tonight. I called the doctor, off on Friday afternoon, of course. I had to go to the hospital,( hubby drove) where they left me a script for tramadol. I cannot take most narcotics bc of itching. I can take tramadol cautiously because it makes my muscles jump and keeps me awake at night.
Has anyone else had to sleep sitting way up and is the rest normal. I see the doc on Tuesday, so he can check and reassure me. I knew the nerves would start to scream. I was not prepared for the pain when barely touching the head to the pillow. I will be sleeping up higher tonight, for sure.
I am looking forward to the swelling receding. I cannot take any NSAids or tumeric or aspirin because I had a bleeding ulcer. I think I would feel better if I could. I knew going in that any surgery is tough so I am not panicking.
I will post more after I see the doctor Tuesday. I may post pictures soon.

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Emma, somehow the formatting of your post became corrupted. (I’ve seen this before, and I don’t know how it happened.) I did an edit and I think it is right now. Could you please have a quick read through to see that it’s OK?

All the best to you in your recovery.

Seenie from Moderator Support

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Emma- I’ve had ear numbness with both surgeries, not swollen though. My second surgery my hearing was reduced as well, & my ear & face felt like it was set in stone, it was weird. But that improved after a couple of weeks, although I do still have some numbness- I’ll take that over pain though!
I guess that there could still be swelling in your neck & skull base; that could potentially get worse overnight if you’re not propped up so would explain that pain. I still had to sleep semi-upright for a few months I think, & used a V shaped pillow to take the pressure off the side of my neck for a long time- I think maybe a year?
I would imagine that the nerves are starting to heal now, that’s why they’re giving you pain. Have you looked at the Ben’s Friends Facial Pain group- they have a lot of info on medication & info about recovery from MVD surgery which might be helpful?
I hope that things settle down for you soon- it’s good that you’ve had surgery before & you’re not panicking, it’s going to be a long job… You’re in my prayers.

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Hi Emma,

I’m very sorry to hear about this step backward, but part of ES healing is sometimes 3 steps forward & 2 back. Nerves are not silent when they start to heal as you’ve noticed. Recovery would be much more pleasant if they were. I also had to sleep very upright (but not quite in sitting position) for several months post op or my throat would feel like it was closing up. That sensation gradually went away, & to err on the side of caution, I began lowering my pillow level slowly until I got it back to one pillow at night. It was an “up & down” process as sometimes I’d have to go back to more pillows after a good night on less pillows.

I’m glad you can at least take Tramadol, even w/ caution. Watch out for constipation w/ it though. Make sure you’re taking care of your intestinal tract even if you’re not taking it on a regular schedule.

I’ll keep you in my prayers & hope that by your doctor’s appt Tuesday you’re feeling much better than today.

:two_hearts::bouquet:

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@emma…I’m soooo sorry you are having a time of it. Recovery from surgery is never what I would call pleasant and ES surgery seems to me would be a true test to your endurance. I hope the tramadol is doing some good for you…I could not go on without it. Like you, most other stuff makes me itch like crazy. I have read post op stories from others and the sleeping sitting up seems to be a must though sadly it sounds like you are having hyper-sensitive nerves and just air blowing across them is more than you can stand. I surely hope this calms for you over the next few days and you are able to get some rest and relief from your pain. Not being able to take anything heavy duty for the pain makes things so much more difficult. Just being able to sleep through most of the recovery is so important - I’m sending all the good vibes I’ve got your way my friend.

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Day 12 much better today, no pain meds for 24 hours, not even tylenol. Gabapentin and a little xanax last night 18 hours without them,now
Normal stuff like feelng like food and saliva are not going down and sticking in my throat, but no pain,just annoying. Most annoying is constantly clearing my throat.
Any little area that I rub near my neck not hurting,but definitely ends up with pressure behind the ear, exactly where the problem was. So I am good, today much better and way better than after the intraoral on that side.
I see the doctor tomorrow. I want to know what he had to remove, pictures etc. As far as prognosis, I am sure he will have very little to say because these are nerves, but I am pretty sure that I am not worse unless I am really having swallowing issues.
My stomach feels like it does not like the continuous drainage. I am drinking a lot to keep hydrated. I am ready for the throat clearing and drainage to stop, but not sure what to do. Way too early to be healed and still swollen so thaaat’ss aalll ffffolks!
I have no real energy,yet and glad that I am retired.

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Hi Emma!
Great news about your improvement! The swallowing troubles are from inflammation so keep the ice coming - 15 min. on & at least 45 min. off. I didn’t experience the throat clearing or drainage problems but did have the swallowing/swollen throat issue for about 6 weeks post op after my first surgery - not so much after my second one. As far as your energy goes, you’ll probably notice a return to more normal energy at about the 2 month mark post op give or take a few weeks in either direction. The 2 month post op mark was consistent for me to start feeling “normal” after both of my surgeries. That doesn’t mean my nerves were healed (that took 9 mos to a year), but my energy returned & I felt more like regular self.

Glad you’re having your post op follow-up tomorrow. It will be reassuring to hear what your surgeon has to say.

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Really glad that the pain has settled, let us know how you’re getting on, you’re in my prayers.

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@emma
Woohoo, so glad you are feeling better! That throat clearing thing, though not painful for me is one of my symptoms and drives me crazy! Anxious to hear what the doc has to say about everything - keep us posted please!

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Everything is great, excellent100% on track. The throat clearing, and annoying drainage, doc says is from the anesthesia that often causes a release of histamines. It should clear up by the 6 week mark. He suggested that I avoid antihistamines or take a very low dose occasionally. I will try to avoid.Starting today massage a moisturizer on the scar. I see him in 4 weeks. Did not get pictures and full report. Regular report is in my file,but the pictures and teaching report are on his cell for teaching. He will give it to me,but I forgot to ask again. Before my next appointment, I will call and ask for him to make copies for me.

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That’s good emma, glad things are still improving! I forgot to ask for pics after my surgery too.

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Did you have temporal headaches. I cannot sleep and my blood pressure rises whenever the pain comes on from my surgery site behind the ear to the temples to just above the eye. It is what I used to call migraines. I get cat naps now. I enjoyed about a week of real sleep, but the last two nights not much. I was ok yesterday until about 2 pm and boom, a headache for over 14 hours now.
Has anyone had that and have it relax a bit over time ???. It is really messing with me. I still cannot get a comfortable safe unpainful position. I must have moved the wrong way yesterday,but I would not know how. I am trying to do almost nothing, but one nerve got angry and when my blood pressure goes up, everything in my system reacts. I hurt when up but not so bad if my neck touches nothing but night or resting is almost impossible
I cannot find a comfortable way to rest my head. I have a soft head pillow for air flight. It and sitting at a very slight angle on the reclining sofa with a throw pillow behind me to keep my neck from actually touching the sofa,just the airline pillow sort of works, but this is getting hard on my sciatic nerve. I guess I will try half a tramadol today. Going to glaucoma doctor for eye checkup after the steroid infusion. I know I am venting and whining.I had a horrible neck fusion, not sure I am really strong enough emotionally to handle this and another difficult surgery,but I had no other choice. I do the ice with gel packs on and off. When the gel pack is no longer really cold and cannot cause tissue damage,I let it cushion my head sometimes. Not sure what works really.
I have 3 or 4 gel packs that I can rotate.
I am praying that the headaches go away soon.The painful skull was the reason for the surgery, but this darndarn nerve is getting the best of me.
So, about day 14, things are getting nasty.

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Oh Emma!
I’m so sorry that recovery is being a roller coaster ride for you, but some good periods are better than none. Tramadol would be a good idea at this point. Being in constant pain actually slows recovery because your brain puts its effort into combatting pain rather than into working toward healing. As much as we all hate the side effects of prescription pain meds, they do serve a useful purpose.
I don’t know if you’ve seen there’s a new opioid pain med that’s been developed that’s non-addicting & isn’t supposed to have the side effects of the current drugs. You could ask your doctor abt it. The new med may not be on the market yet but it sounds like a great replacement for the current options.
If your sciatic nerve is getting irritated, try icing the side of your gluteus area as that’s where the nerve gets compressed.
I will continue to pray for your healing. Unfortunately, as you know, it will be baby steps progress over several months.
Sending you a gentle hug :hugs:

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@emma
I’m so sorry you are experiencing discomfort with your recovery. You neck issue sounds much like hypersensitivity but those headaches are worrisome. Hopefully it’s just one of the nerves trying to settle down…headaches are part of my life and lately seem connected to my blood pressure. Tramadol if def my friend and I cannot imagine life without it. I wish there were something I could do to help you and make the pain go away.
After an abdominal surgery I had several years ago, the upper section of my left leg was hyper-sensitive and I couldn’t stand anything to touch it. If I remember correctly, it took about 4 weeks or so for it to calm down. Hopefully in your case, it will not take that long! I’m sending good vibes your way and hoping for that nerve to shush! The headaches you describe are excruciating and the ONLY relief I get is from tramadol. Though it doesn’t make it go away, it does take a bit of the edge off so I don’t just go screaming in the streets! If I could tolerate something stronger I would do it and just check out for a day or two and try to sleep though them - last one was 5 days long.
Curious about your cervical spine surgery…seems many of us ES sufferers also have cervical spine issues that require surgery at some point. Did I understand your post correctly in that you had that done recently as well? I think my neuro surgeon is trying to figure out which comes first, the chicken or the egg. He wants desperately to fix this ES thing for me but doesn’t have experience. He actually told me that I probably know more about ES than most docs…YES, YES I do!!! He says ES is one of the very few and rare medical anomalies that actually crosses over 2 disciplines - Otolaryngology and Neurology. He really wants to be in on my ES surgery but knows it will never happen for lack of Otolaryngology knowledge and experience in this area.
Best to you my friend - chin up (or down or whichever is the most comfortable). This too shall pass and you will come out on the other side better for it. :sunflower:

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Can’t give you any advice really, as I’ve not had those headaches myself, my pain was in the sides of my neck so a V shaped pillow helped. But obviously yours is different. Have you ever tried baclofen? Maybe a muscle relaxant might release muscle tension (I guess maybe that might well be a problem with the pain you’re in?) & it might help a little?
But sending you hugs & I’m sure things will settle again soon for you. Unfortunately nerves can take quite a while to heal, as I’m sure you know… And please feel free to vent on here as we do understand.