I’ve been quietly lurking and trying to support everyone with hearts. I’m in pretty rough shape and feeling a little lost again. There’s a swollen bulge above my stylohyoid ligament right now, and I’ve been getting lots of head pressure, neck pain, tongue swelling, and what feels like nerve pain in my mouth, and trouble swallowing and speaking has become pretty horse at times. I’m taking a lot of ibuprofen each day just for the pain, but it’s the swelling that has me concerned. I have stabbing pain when I try to look down and to the left. I also have a new symptom of strange spasms in my left hand, and I’m not sure if it’s connected as the worse styloid is on that side.
My appointment with Dr. Hackman isn’t until mid-January, and I have no idea how long it will be until my surgery after the consult.
I have an appointment with my local neurologist, who knows about eagles, in a few weeks. I’m thinking of asking him for some guidance. But even that seems far out.
Any recommendations on which direction to go? Any pain management tips?
So sorry for you pain and suffering. Several things to think about for pain management. If you’ve not tried Gabapentin, might be worth a go. I have a love/hate relationship w this drug but has been a lifesaver for nerve pain. My side effects are extreme bloating that I’ve learned can be helped by taking it with a fat. I use full fat yogurt for that and has helped. I also have some hair shedding… but that’s the least of my concerns.
Lidocaine patches are very helpful for nerve pain. Prescription patches are 5% lidocaine and over the counter are 4%. I’ve not tried the over the counter, but do cut the patches and apply to painful areas… under the ear/styloid area and on cheek for overactive TMJ pain.
And some type of steriod for the swelling. I have questioned prior if a low dose would help those who are awaiting surgery as I suspect the styloid causes an inflammatory response… Not a doctor, and only my thoughts after dealing with this and reading gobs of experiences. But a dose pack that titrates, might be what you need now to knock back the swelling.
I had issues looking down (still recovering from surgery with Dr. Hackman 3 weeks ago)… turns out my stylohyoid ligament was under extreme tension. He removed part of that ligament. As I still feel some surgery pain, I’m not flexing the surgical area much yet, so response to the removal TBD.
Hi @ectocake and so sorry you’re in pain. As far as recommendations for pain management you might want to try an opioid like hydrocodone (Vicodin). They do have an addictive side but not if you take them sparingly. Additionally benzodiazepine like Valium can help with muscle spasm and in turn pain with an additional bonus of being an anti anxiety medication. They should be taken sparingly too as benzodiazepines are highly addictive. I haven’t had any problems with either but I don’t take them every day, but only on very bad days. If you have issues sleeping because of the pain antihistamines like Benadryl have a side effects of drowsiness and can help you fall asleep and sleep better. As far as mouth pain I do get deep pain in my left cheek and for that I use cayenne pepper extract applied to the gums and cheek (yes, I know sounds crazy ). That being said I’m not a doctor so always consult your treating physician.
As for seeing Dr. Hackman in January have you gotten yourself on the waiting list to get in sooner? You should also start calling frequently to check for cancellations. That’s how I got in much sooner, instead of January I was seen at the end of October. I know of others who got in way sooner, one lady was scheduled in February but got a call and was offered to be seen the next day after the call which was earlier this week. Persistence pays off. Good luck!
@Elena - Capsaicin (the chemical that makes peppers hot) is also found in creams used in lowering arthritis pain. Who knew something that’s as fiery as capsaicin could be useful for combatting pain! Thank you for sharing some good advice.
@ectocake - some people have found that opioid pain meds aren’t as helpful for reducing nerve pain as nerve pain meds (which are anti-seizure or anti-depressant meds). It might be best to start w/ a nerve pain medication, & if it doesn’t work, move to an opioid if necessary. Be careful with Ibuprofen. I gave myself stomach ulcers by taking too much even though I was drinking a substantial amount of water when I took them. You may know this, but in case not, you should always take Ibuprofen w/ food & at least 8 oz of water to protect your stomach lining.
@Leah - Thank you, too for your sharing what’s worked for you. The more information we have the better equipped we each become to help ourselves. I hope you notice very positive changes from your surgery ASAP. It may take a couple of months so patience is key.
I agree with the suggestions the others have put forward…just wanted to add that I take Amitriptyline in a low dose for nerve pain, it has the added benefit of helping me sleep too. Heat or ice might help if you’ve not tried that, & sleeping partly propped up really did help me.
Have you seen your GP/ PCP about the swelling? That might be an idea…some members have had swollen lymph nodes, or it could be a distended jugular vein? But an idea to get it looked at, maybe with an ultrasound?
Sending you a hug and a heart back
Sorry for the delayed response. I’m just getting a chance to catch up here. I will try the lidocaine patches. Thank you for the suggestions. I was able to get in with Dr. Hackman early. I’m actually at the airport waiting to return home. It looks like I’ll be having surgery in the painful side in January. I’m not scheduled yet but that was his best guess as to when he could get me in.
How have you been recovering? I’m eager to hear how your feeling since your surgery. Hope all is well!
I do have some Valium leftover from this summer. I will try those. My pain management doc didn’t really want to do steroids since it’s a highly vascular area with structural abnormalities but he was giddy to see my styloids.
I was able to get into see Dr. Hackman today and he says I should be able to schedule surgery for January so it’s lidocaine patches and Valium until then I guess. lol
Thank you for the suggestions!
Thank you for the suggestions!
I stay hydrated especially since the POTs diagnosis but it’s always a good reminder.
I was able to see Dr. Hackman today and he really is fantastic. He wants to remove the shorter side first as he said it looks like it may be hitting my spinal cord and it’s the side causing me pain. I found it odd, but the side that’s completely connected and over 8cm long is not the painful side. Not sure why I was confused. The other side is over 4cm from the styloid and also growing from the hyped separately is what it looks like. He said it’s hard to tell exactly what going on but that’s what it looks like. He of course couldn’t guarantee any changes other than the pain relief, but said he’s had other folks find relief from a variety of symptoms that he would have thought were unrelated. I’m so thankful and oddly excited to have surgery.
Thanks for the suggestions! They did do a sonogram of the arteries in my neck and didn’t find anything but this is up higher.
Good news seems like I may be having surgery sooner rather than later and surgery may be quicker than any further diagnostic testing.
Wonderful that you got in early! Fingers crossed that there is an early opening for your surgery. Recovery is definitely a roller coaster, and part of that is my fault. I cooked and hosted my kids for Thanksgiving … and while I paced myself, what I figured out is just the act of being and communicating with others (and laughing) was hard on my incisions. Since I do take nerve med (gabapentin) I think it can give a false sense of the state of healing … until you figure it out later.
Have you thought through travel after surgery? We stayed the week and part of me thinks going home on the ‘steriod’ honeymoon has merit. But I was not comfortable coming back home with no one to deal with me should there be a complication. And there wasn’t (hooray!).
I’m 5.5 weeks out now. Still surprised at how much energy I have… I still overdo it some and pay for it (like today… where I layed low for the most part). My styloid pain is gone, most nerve pain is gone with exception of back of neck/base of skull, but that has diminished. My breakthrough pain has reduced and am starting to work on gentle neck stretches. I can turn to the left and look down without feeling I would faint. The changes seem to come in micro-doses… like I don’t notice until I do, like with turning my head to the left.
A note on the hospital, the overnight staff (for me) was not good. Hopefully that was a one off, but if you can have someone overnight with you that might be good. Please ask any questions you may have.
@ectocake great news, glad you were able ti get in sooner. My bilateral surgery with Dr. Hackman is on January 8th so you might be very close to that date! I hope all the pain management tips help you and best of luck with your surgery and post op recovery, hope you achieve complete resolution of symptoms!
My shorter side was also removed first though my longer styloid was causing a lot more pain. My surgeon felt because of the angle & thickness of the right side it was more imperative to get that one outta there earlier than later. Some of my more “scary” symptoms did go away w/ that right styloid (blood pressure drops when I exercised which caused me to feel like I’d pass out, racing heart, breathlessness w/ bp drops, etc.). After my first surgery, the pain from the second side ramped up even more so I could hardly wait for my second surgery! I hope that doesn’t happen for you, but since you’re solid from styloid tip to hyoid, you may note symptoms from your hyoid being anchored on one side.
I’m glad you got to spend time with your family for thanksgiving, it sounds like it was a good time. I can see how Thanksgiving might be a rough hangover though with all the talking, eating and laughing. Noted about the nerve meds.
It’s an hour and half long flight for me. For this trip I flew up there on Wednesday and had my appointment Thursday morning and flew back Thursday night. It was a fairly easy trip other than having to spend extra time in the airport or kill time somehow. I asked Dr. Hackman his opinion on going by myself and kind of repeating the same journey and he thought that it was doable since I will be staying the night in the hospital. I don’t have a babysitter for my kids - my oldest is profoundly autistic and I haven’t been able to find any great services in the area for him. So my husband has to stay with the kids. I’m hoping you’re right and traveling sooner after is better than later. I’m scared to go alone, but I was scared this time and I made it. How far did you travel? Did you travel alone? Do you think you would have been ok to fly solo in airports the day after?
I’m so happy for you and your recovery. I hope you continue to see improvements. If I turn left and look down that’s when I get my worst symptoms too. Like a zap crunch feeling. How is this for you now? Do you follow up with Dr. Hackman via telehealth?
I’m sorry to hear that the hospital staff overnight weren’t the greatest. I know they can be short staffed in many hospitals at night. I don’t know that I will be able to have someone overnight with me, so this is a little scary. Were you able to get up and move around yourself that same night?
That’s great that your scarier symptoms were alleviated with the first surgery. Dr. Hackman doesn’t like the trajectory of my shorter one and that it looks like it might be hitting my spinal cord in some positions. I’m sure that’s probably where more of the scary symptoms are coming from. I was diagnosed with POTs but I’m hopeful that a lot of those symptoms will go away after the first surgery too. I used to love to workout, but the best I can do now is walk, some days. My heart rate spikes pretty high now. Even yoga would exhaust me.
I’m honestly scared to leave the other one either way, even if there’s no symptoms. But then again, if there are no symptoms I guess there’s no reason to operate. What are the symptoms of the hyoid being anchored on one side?
So sorry that you have to do the journey alone, really tough with your home situation…I volunteer with a charity & support families with neurodiverse children , I wish I was nearer & could help you, a bit of a trek from the UK though! Do you have any family or friends who could come with you? I wasn’t in too much pain following my surgery, & only had a 2 hour car journey home after 1 night in hospital, but I did feel quite spacey & wobbly the next day, I presume from the anesthetic, & was glad of my hubby for support. I’m just a bit worried if you feel wobbly & are on your own… @Isaiah_40_31 and others have posted advice about travelling, getting ice & help at air ports etc.
Things you might experience w/ your hyoid anchored on one side are swallowing difficulty, sore neck & throat, pain when sneezing, coughing, laughing, swallowing, taking a deep breath, etc., are possible. You could also have the general nerve pain symptoms caused by ES. The hyoid bone is thin & “floats” where your neck & chin meet. When it can’t “float” freely, that’s when symptoms can show up.
I agree it would be good if you have a friend who could come with you for your surgery, however, traveling on your own is doable. You’ll need to contact the airline ahead of time & order a wheelchair on both ends of your flight on the day you go home. That way you won’t have to walk a long distance in the airport. There will be airport staff to escort you to your gate.
Your biggest problem as @Jules noted may not be pain but feeling spacey from the anesthesia & pain meds. You definitely won’t be able to drive yourself. I also recommend getting a seat in business class or first class (if you can afford it) on the flight home so you have more leg & reclining room. Flight attendants are great about providing bags of ice so you can keep your neck iced during your flight, but you’ll need to bring along a washcloth or small towel to put between your skin & the ice pack. You may even receive a refillable ice pack from the hospital you can use on the plane & just get ice refills in flight.
Definitely best to leave a non-symptomatic styloid in place. We have a few members who’ve had a non-symptomatic styloid removed & ended up w/ more pain rather than less. That’s definitely not the expected outcome.
I think it is going to work out that my husband can come with me. His mother cares 24/7 for her mother, so we were unsure if she would be able to find someone to cover for her, but she did - hopefully nothing falls through there.
Thanks for all the advice. I’m hopeful that I won’t have symptoms once the really painful side is gone. It’s hard to tell what’s coming from which side, but the painful side is the side that Dr. Hackman said the trajectory was more concerning than the fully connected side. So, I’m glad it correlates with what I’m feeling. That’s hopeful that just one side is responsible.
I doubt I will want another surgery after this one. So, hopefully, I don’t need one. He did say if my POTs symptoms aren’t gone, it may be worth exploring.
My mother-in-law seems like she’ll be able to help watch the kids so my husband can travel with me. Hopefully, I won’t have to worry about traveling alone.
). That being said I’m not a doctor so always consult your treating physician.
