Recovery has been slow and hampered with a few setbacks. It’s been almost a month and I continue to have quite a bit of surgical pain. I have severe jaw, facial, ear pain and shooting pains up into my head. If I even think about eating or drinking something I’m in agonizing pain. My face is still quite swollen along the jaw line. I know that so many of you have had really positive results very quickly. Have any of you had a similiar experience as mine with the external approach and if so, did things improve to the point where you were satisfied with the results?
To further complicate my recovery, I have had excruciating pain throughout my shoulder, collar bone and arm. I haven’t been able to lift my arm since I woke up from surgery. It actually looks deformed when I try. Finally after repeated calls to my doctor’s office, they were convinced it was not trauma to the nerves as originally thought. They ordered an MRI last week and I received the results this week. The MRI revealed several tears in the tendons as well as a few other things I can’t decipher. I have an appt with an orthopedic doctor on Monday. Has anyone ever heard of this type of complication?? The pain has been nearly unbearable and I’m really fearing that I’ll need an additional surgery to repair this issue.
I don’t want to discourage anyone from having the surgery. Fortunately so many of you have seen tremendous results. But I do think it’s important that we share our experiences. I think that my situation is uncommon and certainly the exception.
I would be really grateful for any insight anyone may have.
Susan
Sorry to hear that things haven't been going so well for you, Susan... a lot of people have had instant results, but a lot of others have found recovery, especially for nerve pain, can happen gradually over up to a year.
The pain in your face/ jaw sounds a bit like Trigeminal Neuralgia? Have any of the doctors suggested that or looked into it? It might be worth trying some medications for that if you haven't already (there's info about that in the ES Info section, but medications like Amitriptyline, Noritriptyline, Gabapentin, Neurontin can really help, although it can take a few weeks for them to build up enough to help, and sometimes can take several tries of different ones. There's a Ben's Friends site for that for more info too- might be worth a read if you can. I've had jaw pain before my op, and it's taken a while to settle; it still comes and goes.
I've heard of one member with shoulder damage post-op (that was eddieh- he's not been on in a while so not sure how he's doing). The doctor who did my op mentioned it as a possible complication from surgery but that was more from nerve damage. Positioning from the op can also cause problems.
Thanks for sharing your experience- I hope that you can get some help for these post-op problems, and that your appt. on Monday helps. Let us know how you get on, thinking of you...
It sounds to me like you have First Bite Syndrome:
First bite syndrome is characterized as pain in the parotid (salivary gland) gland or lower jaw area (mandibular region) at the first bite and, subsequently improves with each bite. The cause is unclear but, may be related to nerve impairment from surgery or other conditions.
I say this because of your comment that if you even think about eating or drinking something, you get agonizing pain. That was my scenario after my first surgery. The medications Jules mentioned can help with that. I opted to go meds free & just did a lot of hopping around, holding my jaw & moaning for a few minutes everytime I started eating. My family was entertained , but I was not...It's been a 15 months since my first surgery, & I still have FBS, but it has subsided substantially. It's still very annoying and painful but much less intense & happens with less frequency. Your post surgical pain will subside with time. It's vital you listen to your body. Take your pain meds if you still need to & use ice on the sore areas if that helps. If ice doesn't help, try heat. I also had to sleep w/ my head elevated substantially for several months after each of my surgeries. This helps swelling in your face & jaw decrease. I used a wedge pillow (from Bed Bath & Beyond) w/ several bed pillows on top of it to create about a 30 degree angle. This was at my surgeon's suggestion.
I am so sorry you're still very uncomfortable a month after surgery. Be patient and listen to your body. Be willing to take it easy & not push yourself.
I agree with Isaiah, you could also have First Bite if the thought of eating is troubling to you. I had external dissection on 11/19/15. FBS came right at the first week mark and now at just past three months post surgery, it is completely gone. My surgeon had me raise and rotate my right arm at my first follow-up - I guess now I know why.
I still have a lot of swelling along the lower back part of my jaw and neck. They also said that can take several months to go away in some people. Good luck!
Susan, I'm sorry to hear you're suffering. A month out from surgery is not very long, so it's very very likely that you will improve a lot over the next couple months. The surgeries often take several months or more to fully recover from. The nerves have been roughed up quite a bit and take their own sweet time to heal. And one of the nerves that can be affected is to the arm and shoulder. I don't know of course why your doctor decided it wasn't from trauma to the nerve, but I still would guess that you should wait a couple months to see if there's improvement before you decide to do anything else.
I've had 5 Eagles surgeries and had pretty easy experiences for 4 of them. The one I didn't have such an easy experience with was my surgery for vascular Eagles at the Cleveland Clinic. My vascular symptoms went away immediately, but I had a LOT of pain from the surgery for about 6-7 months. It was an external surgery by a surgeon who had never done an Eagles surgery before. I was swollen for a long time too. I don't remember how long the swelling lasted, but it was definitely longer than a month.
I had my fifth surgery six months ago and I'm still feeling it somewhat. It's so hard to figure out what's going on with recoveries and nerves.
Susan, I'm sorry to hear you're suffering. A month out from surgery is not very long, so it's very very likely that you will improve a lot over the next couple months. The surgeries often take several months or more to fully recover from. The nerves have been roughed up quite a bit and take their own sweet time to heal. And one of the nerves that can be affected is to the arm and shoulder. I don't know of course why your doctor decided it wasn't from trauma to the nerve, but I still would guess that you should wait a couple months to see if there's improvement before you decide to do anything else.
I've had 5 Eagles surgeries and had pretty easy experiences for 4 of them. The one I didn't have such an easy experience with was my surgery for vascular Eagles at the Cleveland Clinic. My vascular symptoms went away immediately, but I had a LOT of pain from the surgery for about 6-7 months. It was an external surgery by a surgeon who had never done an Eagles surgery before. I was swollen for a long time too. I don't remember how long the swelling lasted, but it was definitely longer than a month.
I had my fifth surgery six months ago and I'm still feeling it somewhat. It's so hard to figure out what's going on with recoveries and nerves.
I'm so sorry for the delay in responding. For some reason it didn't notify me of everyone's replies.
I saw the Orthopedic on Monday. A very disappointing experience. Obvious that I chose the wrong doctor for that. He does believe that the Brachial Plexus nerves have been irritated and inflamed. He didn't attempt to answer the new rotator cuff injuries or the fact that my arm and shoulder are severely out of place and weird looking. He just said, "Yeah that does look strange." I just started physical therapy today so hopefully that will help restore my mobility. She's amazed at the extent of pain I'm in as well as the deformed looking shoulder/collar bone area.
Jules, thank you for the insight. I'll look into Trigeminal Neuralgia.
Isaiah and I am Groot, You described my symptoms so perfectly. What a help it is to know that I'm not crazy. I'm sorry you both have suffered from this. It's extremely painful! Also thank you for the suggestions regarding the jaw pain. I'm anxious to try something.
MusicGeek, I appreciate the prayers!
Heidmet, Five times!?!? I can't even imagine another surgery right now and you've done it multiple times! Seems all of you can relate to the angry nerves. I have no choice but to wait it out and hope it starts getting better soon.
I wish you all continued recovery. What an amazing group of people! I'm going to make every attempt to stay involved with this support group to hopefully help others with navigating this crazy issue.
Ohhhh nooo!!! Poor you!! So sorry u had to deal with this. Now that’s freaking me out as I’m scared that will happen to me as well. Surgery is next week, extra oral. That’s my biggest fear I turn worse off how long did the surgery take? And how many has he done? I hope it gets better for you!
Hope that your surgery goes well, Kelx- Susan's shoulder problem is rare, so try to focus on that. No surgery is without risk, but you have to remind yourself that it doesn't happen very often, and do you want to keep living with the pain you're in? Will be praying for both of you!
how long did the surgery take? And how many has he done? I hope it gets better for you!