I had left side styloidectomy 1 year ago with Dr. Delacure. The surgery was rather uneventful, left that day and went home on just tylenol and advil, ate whatever I wanted and was back in the gym a week later (modified of course). However, the symptoms and pain are all still here… I was referred to the center for the study of pain in NYC, Dr. Delfino. They tried an injection into the ligament, but nothing helped and they were at a loss for what to do. I am now seeing a 3rd neurologist to see if maybe they have some other magic that can help with the daily pain.
Recently now, the right side has started having that pain in the neck area. I’m afraid that side may be an issue as well. But leary about having surgery again since the first one didn’t help. Also Dr. Delacure looks to have retired. I’m in New Jersey and was looking at Dr. Cognetti to get a consult. Has anyone recently seen him and possibly know how long it will be to get an appointment?
I’m having a CTA and CTV done next Friday ordered by my current neurologist. But maybe I can ask him to do a regular CT as well to compare the styloid length to the last CT a year and a half ago.
I’m so sorry that the surgery didn’t help you, that’s very tough. We have had members who have had crossover pain, & have found that the side not operated on is causing issues with the removed side too- so it could be that, & worth considering having the second side done…
Not sure, but I would’ve thought you’d be able to see what’s left of the styloid on the side Dr DeLacure removed- it might be otherwise that not enough was removed to stop symptoms, or there could be scar tissue which wouldn’t show on a CT obvs.
Dr Cognetti only does surgeries once a month I believe so has a longer wait. Dr Jason Newman also in PA is experienced too if you don’t want to wait so long?
Sending you a hug
Hi Jules,
I know Dr. Delacure removed 4cm styloid to the base of the skull. So there wasn’t anything remaining. And I saw the photos of it too … Maybe there is scar tissue or the other side needs to come out too. Or something completely different all together.
I didn’t see Dr. Newman on the doctor list, but maybe I saw an old list??
Does he have a lot of experience working with ES?
Another doctor you could consider is Dr. Hackman in NC. He’s done quite a number of ES surgeries for our members & most have been highly successful. I had crossover pain after my first styloid was removed but that disappeared once the other side was taken out.
I also agree w/ Jules that we’ve got a few members who developed post op scar tissue that put pressure on the same nerves affected by the styloids. Getting the scar tissue broken down helped w/ their pain. Scar tissue can be worked on by a trained massage therapist (probably a cranio-sacral specialist) or via laser therapy. In some cases a minor surgery is required to de-bulk it.
I am sorry you’re still struggling w/ pain. That is rough. I hope you get some help from your current neurologist that makes it more tolerable. I also hope the CT scans are very helpful. Please keep us in the loop so we can support you.
Hi Tjmhawk01,
Unfortunately I still have all of the symptoms. Still trying things. I have neurologist number 3 in NYC at Cornell/Weill. He’s doing another CT scan and a CTV scan. While I’m sure it will still show nothing…
They wanted to start me on nortriptylene (pamelor), but I’ve been reluctant to try it because of the side effects.
Wish I had better results…
@deezy456 sorry I haven’t followed your story closely or lately, but…
Do you have by any chance a straight (“military”) neck aka loss of cervical lordosis and/or any disc problems in the neck (hernias, protrusions, dried out discs) etc? Have you had any MRIs of the neck?
I’m very sorry to hear you’re not improved after your surgery @deezy456. I hope your neurological studies turn something up that can be treated. Some of our members that take nerve pain meds for the long term have found that starting w/ a very low dose & gradually increasing (over weeks/months) to the effective level helps to reduce side effects because the body can get used to the medication gradually. You can talk to your doctor about this.
Deezy, I’m so sorry to learn this. I can relate to some degree having been misdiagnosed, had surgery for that diagnosis then no change in symptoms. I have an upcoming styloidectomy looming and am fearful it won’t help but praying it will!
Would there be any value at the least, consulting with another well-experienced ES surgeon elsewhere/out of state? As I’m sifting through this forum, I read a lot about crossover pain with bilateral cases. I know this is a fearful path for you but it may be of good value to have that chat.
Deezy, my heart cries for you. There’s sometimes few words of comfort that can be offered in situations as yours. As a faithful person, I’ll certainly keep you in thoughts and prayer. I hope (as do all who’ve read your story, most surely) you find your path and relief very soon!
Please come back and update as you see fit. I’m certain I speak for many that despite what the next diagnosis may be, we come to care sincerely for the well-being of people who pass through this forum.
I agree with Isaiah’s/Jules comments on possible scar tissue. I have a history of laying down scar tissue which compresses nerves - eventually I had surgery to decompress the nerves. Im curious what type of injection they gave you as I get regular steroid & botox injections myself. IF they gave you a nerve block to see if your symptoms went away and they didn’t, that rules some things out. You may need some other nerve block tests to rule out other problem areas.
I can only suggest you ask for MR Neurography. It is a specialized MRI that reads nerves.It would show nerve compression by scar tissue.
My other side kicked up after my first surgery but not for long. I chose to go ahead and get 2nd side done as it was longer. Some not all of my symptoms went away but I also have TMJ and cervical instability. Was just diagnosed with TOS. We often have more than one issue going on at once. I figured id get both sides done and see what was left. It was a process of elimination.
I had pain specialist give me pamelor for my neck/jaw pain. It was like magic juice for me but the downside was weight gain. It was probably one of the most effective meds for pain I have ever taken. Even short term, it can break that pain cycle or pain path to the brain. They tried it on one of my adult kids once and it did nothing for her. Go figure. I recall it worked very fast for me.
I’ve had multiple MRIs and CT, CTA and CTV scans of head and neck. No herniations. Loss of cervical curve. Been that way for years, not much change. Chiro adjustments or acupuncture to that area make it much worse. Unfortunately.
Hi Ladyhug,
I have numb burning feeling thru all of the trigeminal nerve areas. Tooth and jaw pain locations varies by the day. Burning eye all the time. Then the glossopharyngeal pain. All the pain gets worse at night.
Hi tjmhawk01,
I may look to speak with another ES surgeon. Although I’m not looking for surgery, but maybe they can look at what was done and have an opinion.
Hi snapple2020,
How did you go about finding out about the scar tissue? Was that the MR neurography test? I looked into a cranial sacral therapist. It was $200 a visit and they didn’t even know about ES. Unfortunately out of my budget to try it.
With the pamelor, i read about the weight gain, which is one of the reasons I stayed away from it. Have back problems and they said do NOT gain any weight, it will make things worse. How much weight gain was it (if you don’t mind me asking)?
The injection they did was just lidocaine. They changed their mind mid injection to not do a steroid. Then before my next appointment, that doctor took a 6 month leave of absence… Ugh.
It was the MR Neurography that found the scar tissue back in about 1996. About 1 year after the birth of my last child (she weighted 9.5 lbs) I started developing severe pain in my left buttocks, leg and SI joint. I had MRI’s, got multiple injections and finally a neck and back surgeon just told me I was drug seeking because I was getting no relief. A coworker had a dad who was a rheumatologist in Beverly Hills. Out of desperation I asked him to speak to his father for me. He referred me to UCLA neurosurgery department. It was there I met Dr. Aaron Filler who had just been developing the Neurogram. It’s now called MR Neurography. After having the scan, he came out and told me I had a mass of scar tissue compressing my sciatic nerve. I cried. Like many of us who finally get an Eagles diagnosis, I finally get the diagnosis that is causing all my pain. I had surgery to remove the scar tissue and my pain was gone. He also did TOS surgery on me in 1999 with the help of the neurogram identifying the area of compression. It again was nerve compression by scar tissue. I have since had multiple surgeries on my hands/arms for the same thing.
Lidocaine injections: well. lidocaine injections are not always definitive. They may just not have injected the right area. Im not sure why they changed their mind mid-injection for steroid. I was lucky to find a neurologist that specializes in injections in neck, jaw and skull. You may want to consider looking for a different provider for these injections. Many of them do botox too. Cervical dystonia was my diagnosis. I just point where it hurts and he injects it. I too have had all kinds of neck imaging that shows little in the way of the cause of my neck pain.
I get you on the cost of cranial sacral person. I had found someone who was a DO and also acupuncturist who was in-network and also said she specialized in cranial sacral work. She wasn’t very good. You may want to check on “The Upledger Institute” for other options.Ill put link below. If you can try and squeeze one visit in and experience it once, you may reconsider working it into your budget. I wish I had found it decades ago. Im not going to one myself due to $$$ and distance so I understand.
Pamelor: Its been a while but I think I took it for about 6 weeks and maybe gained 5-7 lbs. I wasn’t aware of the possible weight gain so I didn’t pay attention to my increased hunger. I think it might be worth considering especially if you are forewarned about the increased hunger and avoid taking in the extra calories?
Personally, I would consider doing the other side especially given how easy your recovery was for the first time. What do you have to lose? I know there are risks involved but I look at it as a process of elimination. I hope this helps.
I’ve been trying to find if there is (and the answer, “likely there is, in some cases”) any link between the symptomatic elongated styloid processes, IJV compression and loss of cervical lordosis (as I have got all these things, and can “feel” that when there are short-lasting remissions, it’s usually all-or-nothing).
So far, my findings are:
stiff, immobile scapulo-thoracic “joint”, trapezius muscles, levator scapulae, pec major/minor muscles, lat.dorsi all lead to immobility of upper thoracic spine and ribcage
stiff splenius capitis and splenius cervicis muscles lead to stiff neck and skull being “pulled” backwards on the spine
which leads to lots of skeletomuscular pressures on nerves and blood vessels literally everywhere in the neck and TOS, crepitus in the neck, loss of cervical lordosis and loss of thoracic mobility.
Not sure if that might be helpful in your case, but my journey started with releasing, stretching and re-training all the back muscles from the neck to pelvis to hips.
Has it helped? Partially. Better than without it? For sure.
… Maybe there is scar tissue or the other side needs to come out too. Or something completely different all together.
