You are not alone in wanting to keep that bone! My husband pretty much demanded it from my surgeon at pre op, wanting to make a necklace - he is so funny 
Every hospital has their own policies. My surgeon was able to give him the very tip (not even close to big enough for a charm) and the rest had to be sent to pathologyâŚtoo bad. He did however give my husband the catheter used for the venogram that made itâs way from my groin into my brain - thinking the wire could be fashioned into a necklaceâŚha ha ha
Cheers 
2 Likes
Love that song. He is indeed holding you in the palm of His hand.
1 Like
Iâve had spells of occipital neuralgia - self diagnosed - but found that was down to my slipped disc & neck tension- it went with the physio exercises I did, so canât put that down to ES! You might find once youâve had 2nd surgery that everything improves from reducing pain, itâs all a vicious circle, pain causing tension, tension trapping nerves, those nerves causing more painâŚglad youâre seeing more improvements & enjoy
1 Like
Jules, did you have surgery for your neck? I have herniated discs in c4 c5 and c3 is not pretty either. Iâm hoping the second surgery helps my neck tension. The first surgery definitely helped with the occiptal pain. I wanted to do the ES surgeries first as to avoid a fusion. I had also read on this website from a few other members that had done the fusion surgeries that they had wished they had done the Eagle surgeries first.
Everybodyâs body Is different but I was trying to go with least invasive 1st with hopes of great success.
SusieQ,
Since I had the R styloidectomy the severe neck tension and crepitus (popping) on the R side of my neck has grately improved. I still have an elongated styloid on the L with IJ stenosis and notice the neck crepitus on that side. This leads me to believe that if I end up needing the L side removed it will clean most of that up. This is on top of significant C67 degeneration and osteophytes from an old mountain bike crash which I have managed with physical therapy conservative care. I do think that addressing the ES first, in my case has been enough. Of course this is with being very conscious of my overall posture and head positioning, strengthening etc.
It is well worth giving yourself time to heal from the ES and try PT before you jump into a fusion. Fusion should always be a last resort. It takes a while for the muscles of your neck to adjust to the new mechanics with out the styloids.
Hope this helps, have a lovely day!
1 Like
Just breathe thank you for sharing this! Can I ask you how you improved your posture? I definitely need work in this area. I bought one of those pull your shoulders back contraptions as with all this pain I have rolled shoulders. Do you use that? I also heard about some sort of tape you can use to try to get your body to remember the correct position. Have you ever tried this? I am working on reminding myself to sit straight and if texting use phone at eye level. Iâm a sloooooow work in progressâŚ
I appreciate your feedback on the fusion as last resort. I am in that camp with you. I had neurosurgeons that wanted to do the fusion for the symptoms I had been having from ES. Although it wasnât that shooting arm pain which is the typical presentation. Thankfully I waited and found this diagnosis first.
I did my first pt session with dry needle yesterday. Temporary relief but he said my neck has good range of motion so I will accept any compliments at this point. I will do 10 more pt sessions before next surgery.
He also said for my facial nerve damage to practice mirror therapy. This is where you make mouth movements in mirror but only look at the side that is working. He said this helps train you back. He also said to chew more food on left side. Chewy things like steak! Soooooo I went home and properly told my husband we needed to go to flemings steakhouse for filet mignon as part of my physical therapy homework!! I will let you know if this strategy works!! This is my kind of therapy!! Finally!!
2 Likes
I have only ever recommended using a âshoulder posture braceâ in the elderly who cannot physically develope muscle strength on their own. The brace tends to become a crutch and you get lazy. Tape is okay in the short term but can irritate the skin.
It is best to go with the reminder of sitting and standing with a long spine, imagine a string pulling from the crown of your head. Once your neck is long it will allow your chin to drop slightly (tuck) and your shoulder blades to roll back and down slightly on your upper back. I have people put a smiley face in a sticky note and place it on your bathroom mirror, refrigerator, computer, dashboard of car etc⌠just remembering to think about where your head is in space on a regular basis. I also use the foam roller regularly.
The PT you are seeing will be able to give you specific guidance and cuing which is important - hard to do it online like this without seeing what YOUR body is doing to compensate. Great that you have some more appointments set up! Depending on how hypertonic your upper traps are you may well need more than one dry needling session. Diaphragmatic breathing is also very helpful as it helps you to use your diaphragm instead of your neck muscles to breatheâŚbut have to have good posture! It is all connected.
The mirror training is fabulous! It helps your brain to ârecogniseâ that part of your body again. It is a normal response in surgery to any part of our body where the brain kind of forgets/ignores it and training it to find that part again is so helpful. It might sound weird but another way is to go through a magazine and using a pen circle any side of the face you see corresponding to which side your surgery was on (either right or left depending on what side your surgery was on - sorry I forget). Another way to reconnect your brain is simply to touch that part of your body, as simple as resting your hand on the incision, this gives sensory input to your brain for recognition.
Yay for eating good filets! Happy gently chomping 
Let me know how things go, will help in any way I can from here 
1 Like
Great advice, JustBreathe! I will also add that as you visualize elongating your spine, gently pull your belly button in toward your spine. This will activate your pelvic floor & transverse abdominal muscles (also sometimes called âseat beltâ muscles as theyâre where the lap belt part of the seat belt sits) & multifidi (tiny muscles which run from your pelvis up both sides of your spine). With the PF, TAs & multifidi activated, youâll have better spinal support from the bottom up which also may help your shoulders let go a bit.
2 Likes
I went to the ymca today as my kindergartner pushed me saying he wanted to go to the gym! He loves the play area for kids while the parents work out. Well I suited up and had not been there once in 2019 and took the yoga class i used to take! It wasnât easy but i made it through the class! That definitely opened me up. Poco a poco⌠or little by little. I am grateful as I would not have been able to take the class prior to surgery. I was in too much pain.
Isaiah thanks your your comments on the pelvic floor as I had previously seen a specialist to help me with pelvic pain. They had said how connected the pelvic muscles are to the neck. I thought it strange at the time but it makes sense!!
5 Likes
Iâve not had neck fusion- not bad enough for that thankfully, & it doesnât seem to get done that much in the UK anyway. I avoid some things, keep up with the exercises, & it seems to be not too bad right now! I do need to work on posture too- youâve all shamed me! 
Hey SusieQ -
How great that you were able to go to the gym & work out at any level yesterday. Yoga is a good choice as the poses are usually done slowly & thoughfully. Just be mindful of listening to your body, & if you start to feel any pain or tension in your surgical area, relax your pose some to prevent a bad pain flare up. I assume you would know to do that though. 
Happy Happy Birthday to beautiful Isaiah. You are a guardian angel to so many of us and I wanted to give a shout out to you today! Soooo happy you were born on this day and a gift to so many of us baby eagles out here!!
Susan
3 Likes
Gosh, thank you, SusieQ! 
1 Like
How is the healing?
Hi there!
I had the second styloid removed today. He cut 3.3 cm off of my 4.6. On right side.
I threw up on the way home unfortunately but I am okayâŚeven with zofran and patch behind my ear. Still lost it but I have sensit6stomach. He gave me
I do not have the pain yet that I had with the first surgery.
Right now is the honeymoon period. Last time day three and four came back on me
Iâm thinking that this could be the answer to restoring my health! I am having stomach issues so I will see a gastroenterologist in November.
Tonight zero occipital pain!! Iâll take it. God is great!
Iâm so excited for you. Will you do both sides,
I will write tomorrow and send picture of scar.
Thatâs great news, will be praying for a quick recovery. Gentle hugs 
Thank you Jules!!
Hi SusieQ, Thanks for the update.
Yes, this is the honeymoon period, but youâre a seasoned pro at this and will get through the harder days. I pray that when this surgery heals and the nerves had time to settle, that your stomach issues will be resolved.
The fact that your occipital pain is gone is fantastic and it brings hope to me for similar pains. I am hoping I can get through to the first of the year to wait for the second surgery.
Keep us posted. You are an inspiration. Thank you.
1 Like
YAY!!! Those headaches are terrible, so happy to hear that is better. You know the drill, sending good stuff your way 
1 Like
Thank you for the messages! What is interesting is I had lots of pain on my left side occipital and deep in shoulders which is the side I had the first surgery on. I could not make sense of it as I thought I was getting better from the first surgery and then regressed. Well based on how I am.feeling right now I think it was the remaining styloid causing me the issue as since the surgery yesterday it is just gone poof! So I am a believer now that the remaining styloid can amp up the pain and you can have cross over pain. Maybe because it is missing its friend. Who knows! I just know that today even with all the surgery pain I feel better than I have in a long time as my head is more clear.I was also having some eye pain in my right eye with redness.
My eye is no longer red and my eye is not in pain. I am of course very very swollen. I tried the tramadol and I canât hang with that drug either. So I havenât taken any pain pills so I am just icing for now and drinking fresh ginger tea with honey. If anyone has any other natural remedies for inflammation please pass along as I am trying to respect my stomach. Brooklyn I will keep you in my prayers. I am optimistic that once you have that final surgery you will feel big relief.i do have nerve damage from 1st surgery with smiling but it is improving. Iâll take a crooked smile with minimal pain vs the perfect smile and ready to throw in the towel. My 5 year old said âoh mommy you have a big owie!! Let me kiss it.â So sweet!!
5 Likes