Surgery has finally been set for Oct 29. With Otolaryngologist Dr Goldenberg. He will be removing the styloid process on the left side externally. I’m praying that this surgery will somewhat give me life back.
For those that have had this surgery I’m curious as to what recovery will be like, how long, when will I get back to work, pain levels, ECT…
Blessings to all
1 Like
Hi SheilaM,
I’m glad you’ve found a surgeon you feel comfortable with and that he’s doing external surgery. If you have a good outcome, we’ll add him to our US Doctors’ List. I would encourage you to talk w/ him ahead to find out how much of the styloid he intends to remove & whether or not he’ll remove your stylohyoid ligament. We have seen over years that those w/ the best long-term outcomes have their styloid removed back to the skull base & their stylo-hyoid ligament completely removed as well (even if it’s not calcified).
All the symptoms you’ve mentioned are seen w/ ES & are caused by compression or irritation of various cranial nerves & vascular tissues. Surgery should make a big difference for you if your surgeon removes enough of the styloid.
If you click on the magnifying glass icon & type in “Thankful”, some posts will come up. Click on the one that is titled “Thankful for you all”. It’s long but has lots of conversation about post op problems & solutions. You can also type “post op” into the search bar & more discussions will come up about people’s post op experiences.
It takes a couple of weeks after surgery before you’ll likely want to go back to work though some people have returned to work the day after surgery. It will take about 2 months for your energy to return fully & for you to start feeling “normal” again.
If you have bilateral ES & are only having one side removed, be aware that the other side may begin flaring up after surgery. We don’t know why this happens but it does. You won’t get complete symptom relief till the second side is removed. Most experienced ES surgeons require a 3-6 month recovery period between surgeries.
I’m sorry your first surgery wasn’t helpful, but it sounds like perhaps you were misdiagnosed or that the ES symptoms are worse than those of Chiari so overroad any help that surgery would have given.
I’m glad you found us & I hope you find the answers & support you need here. I will add your surgery date to my calendar so I can pray for you especially that day.
3 Likes
My right side is normal size and I wouldn’t see any reason to have problems with it.?
That’s good news! Very glad you have a date! It is a good idea to search the forums- looking up what to expect after surgery- as everyone’s symptoms are different & so recoveries vary alot too.
Most people find eating is difficult after surgery, so be prepared for that & have smoothie stuff ready, soft foods etc. Icing is usually helpful, not always but for the majority it is, so have ice packs ready. Sleeping propped up is helpful for swelling so a wedge pillow is good & I used a v shaped pillow too. Seamom did a surgery shopping list so you can search that & see what she suggests.
Recovery can vary- some people have gone back to desk jobs a week or 2 afterwards, personally I couldn’t drive for 3 weeks afterwards, & did some lifting so I didn’t go back for 4 weeks. Others haven’t felt back to normal for 2 months…
You may not have any problems if your other side is not elongated, we seem to see more people with both sides elongated, but good if you have just one!
2 Likes
It’s good news that you only have one elongated styloid. Do make sure you don’t have any calcification on your stylohyoid ligament on the other side as that can also produce ES symptoms even in the absence of an elongated styloid process. Any calcification on that ligament would show on your CT scan otherwise you can’t see the ligament w/o having a CT w/ contrast.
I had the same surgery also externally, thought I made the right decision but 3 months later pain returned - hardly any scar - It is believed I have Glossopharyngeal neuralgia. Good Luck - recovery is not that bad.
1 Like
Sorry that you have GPN still after surgery- do any of the nerve pain medications help you? Have you had other symptoms improve after surgery?
Years ago I got relief from Trileptal, now very little and sometimes none. Do you clear your throat a lot? Reason I opted for
ES surgery was because over the years the pain shifted a little and less of a Electric shock and would hurt when I turned my head.
1 Like
Hi Rufus,
There are other nerve pain meds available. You could ask your doctor to prescribe a different one for you. Also, if you have bilateral ES & have only had one side taken care of, having surgery on the second side can make a BIG difference. Sometimes crossover pain occurs which is caused by the remaining elongated styloid/calcified s-h ligament even if there seem to be no other symptoms.
1 Like
I had GP nerve related pain before surgery on my left side. It disappeared after surgery but now almost 3 months later it is back. I think that I am seeing a correlation to when the scar tissue tightens up and pulls on the surrounding tissue causing the GP nerve to flair up. I am doing PT on the scar tissue but not consistent. Maybe I should chart my progress to see if it helps vs when the flair ups occur to be certain.
I believe the young boy in the book “Connecting the Dots…” had similar issues after his first side surgery and he was insistent that the other side be removed, which did eliminate the GP nerve pain. So I am hopeful to have it all cleared when I do the right side.
2 Likes
Very wishes for your surgery. Where is this Dr?
Both BrooklynGirl’s doctor (Dr. Cognetti) & the other doctor she is referring to (Dr. Newman) are located in Philadelphia, Pennsylvania in the US