emma
Thanks bunches for the update…I so identify with the cleaning thing! Your issues are really simillar to mine. I also had the big heart work-up a couple years ago and no issues were found. You are slowly converting me to the possibility of a skull base surgeon over folks like Dr. Samji. I am so afraid that Dr. Samji will reject me that I am almost to the point of not asking. On the other hand, I just don’t know if I have the heart to see yet another doctor only to be told they can’t help me, or I don’t have long enough SPs to warrant a remedy/surgery. I just don’t know that I can take another rejection. I’m not sure I can even tolerate this long enough to wait out another doctor appointment anyway. Though I have been trying to get SOMETHING done since April, I am becoming painfully aware that it is not going to happen before the end of the year. My insurance premiums are going up along with the deductible come January.
kiZe6159 -
Dr. Samji is a skull-based surgeon. It’s part of his specialty. If you have a diagnosis & a scan that shows elongated styloids, I’ll be surprised if he rejects you. He considers styloid 3 cm long or longer to be ES. Have you made an appointment for a consult w/ him yet? Assuming you do meet w/ him (even over the phone), I expect he would be able to do your ES surgery this year.
I don’t blame you for not wanting to be rejected again, however. You’ve been through a lot of rejection on this issue already.
I’ll be praying you to be able to discern whether contacting Dr. Samji is a good idea or not.
Isaiah40:31 is right D Samji is a skull base doc. My point is that there are others around the country that do what he does.We do not all have to travel that far. Also, all doctors have their own personal criteria for deciding on whom they will operate.
Dr. Samji goes by styloid length primarily. He also gives us phone consults and helps us get CT scans. He did all that for me. I was ready to see him, for one side, but I was afraid of the outcome knowing that I hurt way more terribly on the side he would not do first. That is why I was headed to Dr Newman in PA. I knew that he was willing to do revisions.
The miracle was finding Dr. Nuss in Louisiana, so I was able to recuperate in my own hometown around family and have the revision first.
6 weeks
Doing well. Saw my doctor, he says to be careful,do not overdo. It takes 6 -12 months to heal. Overdoing interrupts healing. Otherwise, he believes that I am doing great and should continue to recover well. Ear and earlobe are slowly developing feeling. He says that may take 6 months or more.
7 hour car ride today, I definitely used a soft collar, because I get sleepy and my neck needed support while on the road. First bite syndrome about the same.
No more sinus drainage or hyper salivation. So thrilled to not be clearing my throat constantly.
Planning the right side in late February,but could do it sooner if necessary. Right side is not as bad as the left was and I do not want surgery during the winter. Late February, the weather starts to warm up in Louisiana and gives me time to heal from this surgery.
Dr.Nuss is a wonderful skull base doctor to do external surgeries in Baton Rouge, La.
emma -
It’s so great to continue reading your positive reports. Evidence of healing is that you were able to endure a 7 hour car trip today w/o heightened pain.
I will continue praying for your complete healing & for you to know for sure the right timing for your second surgery. I’m so glad you persevered till you found the doctor who was best for you. We’ll have to get Dr. Nuss’s contact info onto the ES Doctors’ List ASAP!
Really pleased that things are going well for you & that you’ll be able to have the 2nd side done as well!
I hope to get the doctors list updated soon, but don’t worry, if any new members join in that area I will point them in the right direction…
Not doing so well, now.
My ear canal is itching madly. The numbness around my ear is going away. My TMJ clicking is back. I have not done much the last two days. No energy. Is this normal. I know that it takes awhile for the nerves to heal, but it is scary after feeling so good for a few weeks.
I am uploading a picture of the incision right after surgery so you can see the extent of the original incision. Most of the lower incision is barely visible, now. The part around the front of the ear and back of the ear is where all the numbness and tightness is. The incision is barely visible, but the outer ear and earlobe are wakung up from being totally numb to sort of warm and tingly. Inside the ear canal is so itchy it is maddening.
Before surgery and before I found out about my glaucoma, I had betamethesone ointment that I could put on a swab and swab inside the ear. Now, I need to avoid steroids of any kind. I tried baby oil, not helpful. Cera vie with pramoxine for itching, a little relief. Ice outside the ear, helpful, but only short lived. Will try a lotion with oatmeal tonight. I have a lot of anti itch lotions,but none of them work like betamethasone.
I have just begun to start massaging the jaw and around the ear and lower jaw. I am hoping that I can soften the scar tissue around the ear and that might help.
The area is extremely tight especially the tiny area around the jaw and ear. The top of the jaw bone hurts a bit to touch it. The muscle is really tight there.
Internally, the tissue between the jaw and tongue really hurts. I guess it needs time and massage
sorry that you’re having a set back, I hope it’s shortlived. I have still got some tightness around my scar, & it’s tender at times, I use Bio-oil to massage it & that seems to help. I still have numbness & sometimes strange tingly sensations round the outer ear, 2 years on, but it’s much better than having pain… Haven’t got any suggestions for the ear itching other than maybe piriton/ antihistamine if you’re allowed to take that? But I guess if it is nerves coming back to life then those wouldn’t help.
Having n energy could be a coincidence, maybe you’re overdoing things or coming down with a bug… I hope that things soon improve for you. But generally ups & downs are quite normal. Hang in there, thinking of you!
Hi emma,
I tried to send you a message yesterday but the site went down & it wouldn’t send…so here I am trying again today.
Try not to get discouraged when you have a set back. I know it’s especially hard after you’ve been feeling so good. It is easy to overdo on good days because it’s been so long since you’ve felt good & when there are several good days in a row, the overdoing can end up leading to some less good days. I’m not saying that’s what happened in your case, just want to give you a heads up. As Jules noted, there are ups & downs in the healing process. As time passes, there will be more “ups” & less “downs” so there’s something to look forward to. Low energy seems to be part of the “down” days.
You might be able to get lidocaine gel which might help curb the itching in your inner ear. An itch as actually low grade pain (it’s pain in its infancy) so the itch is likely part of the healing process though knowing that doesn’t make it any less tolerable. Hopefully you’ve found something to help w/ it by now.
Jules & others have used Bio Oil or Vitamin E oil on their incision sites along w/ massage to help w/ the tightness. Dr. Samji recommends Mederma (available at Amazon or any chain drug store) which I used, & my scars were never problematic, but they were also significantly smaller than yours.
I’ll continue praying for your complete healing from this surgery & for good days to be the norm.
