Thank you Isaiah but I still have a way to go. But I’m in a much better place than I was a couple of months ago. I’m no longer talking pain medication and I’m going to physical therapy once a week. I’m also back walking and yoga. It’s been a very long road so far.
Progress is progress. I’m glad you have found alternate therapies that have allowed you to stop your pain meds. SOOO GLAD to hear you’re back to doing yoga. That must feel really good since that was a big part of your pre-op life.
@mouse how are you feeling this weekend?
I’m so sorry not to be able to tell you what I know both you and I would like to hear.
It’s day 10 post op and I had hoped for some glimmer of improvement of my symptoms but sadly that is yet to happen. I still have the exact same tongue pain and discomfort - a feeling that there is a clamp on the back corner at the base of my tongue, like a foreign body that I just can’t escape, with pain, tingling, and aching; bizarrely the only time I’m less aware of it is when I’m eating. It’s very disheartening… The difficult thing is that I don’t see why this should be - glossopharyngeal neuralgia is described as intermittent, electric shock type pains, which I have never had. My pain/discomfort has been constant as in Eagles Syndrome.
On the plus side I feel totally healed from the surgery - although I’m still sleeping upright in the desperate hope that there may be some benefit in that, and I still ice like crazy. My surgery site gave me no trouble at all - I barely even know it’s there.
I promise to post in a weeks time and pray that I may have some better news.
I’m sorry. The discomfort you describe is almost exactly how I would describe mine. It also is not noticeable when I’m eating. I agree that glossopharyngeal neuralgia doesn’t seem to fit. The only sharp pain I get is in my jaw and ear and doesn’t fit the description of GN. I’m glad the surgery itself isn’t giving you any problems. Maybe your nerves were just aggravated for so long that they truly do just need time and the sensation will dissipate. I pray that is the case.
Thank you. I really do want to be able to give you good news - for your sake as well as my own.
Lol I know! I’m so sorry. Keep pushing forward.
Sending you a hug, & hoping that you do see improvements soon. Just to clarify, GPN & other neuralgias can cause electric shock pains yes, but also constant aching pain, also called atypical neuralgia or type2. It is still early days yet, as we see often on the site it can be months before people notice improvements, sometimes even a year, & it can be a very gradual process…will keep praying for you, & sending you a hug
Did your surgeon give you an explanation for the drastic deviation in your surgical plan? It just doesn’t seem that what he did would help you as much as removing your styloids. I’m still perplexed as to why he would have changed his mind seemingly last minute.
I am glad you recovered so quickly from the surgery itself & will be praying for resolution to your other symptoms. It’s well known that nerves can be very slow to heal - (up to a year in some cases), & you’re still in early days after surgery. There is yet time to see good changes.
I think you must be confusing me with someone else? My surgeon removed my styloid to the base of skull…
Here’s the discussion you were thinking of:
Advice on what hell happened in surgery today - Live-Chat - Living with Eagle
Oops! Sorry! I’m glad you’re recovering well just the same!
Thank you, Jules. I had a mental slip there.
Well, I promised to post again, so here I am , but I think this should be my last for a while - unless things improve - as my posts are too depressing. I’m 16 days post op & none of my symptoms have gone - if anything they may be worse. I went to my family doctor yesterday to ask for help as I cannot bear this every second of every waking hour pain & discomfort - I have nothing for nerve pain except ice; sadly he said that the side affects of neuropathic pain killers are too bad & he doesn’t want to prescribe them. I left the surgery with just a leaflet on ‘talking therapies’. So I feel utterly lost & am starting to feel that there’s no future. I can’t come to terms with this being my life. Sorry to be so miserable but this is just existing not living. If anything ever changes then I’ll be back…
I do not go on here too much since it has been so long since my left external surgery 20 months ago but thought I would throw in my nerve pain regime I used after reading your post. I chose not to go on nerve medications, but used some OTC remedies I researched.
I applied a Bengay equivalent to neck area, avoiding the incision area until healed, and capsaicin cream CAREFULLY behind my ear using a glove. I used the short acting cream one, not the 24 hr. one because I would get the 24 hr one rubbed around where I did not want as the day went on, and you do not want to get it everywhere, especially by your eyes. Use a glove or finger cot to apply. I also started taking a B12 supplement. That combination worked well for me. You are probably not feeling like you are in a good space with all the pain you are in, but the quicker the nerve starts to heal, the sooner you will get your life back. So it sounds like in healing land, you are in a good space. I continued using ice also and it was one of my best friends. You may want to check with your Dr. to make sure B12 is okay for you.
I remember feeling very discouraged at times with the pain at times, but try to do some normal things to tolerance to distract yourself from it. I tried to walk everyday short distances and built it up. Do some happy things for yourself! Praying for you!
Have you ever tried xanax for nerve pain?
I was dx with tos 15 years ago. My Dr gave me xanax and i thought too myself I don’t have anxiety you jerk. But low and behold after taking the first dose i could feel the nerve pain dissipate. It is a central nervous system depressant so must be why it worked for me.
Hang in there. Hope this helps!
Dear Kay & Suzzetteas,
Thank you for your kind replies. I don’t think I can get Xanax here, but I can definitely try the B12…
I believe your primary care doctor has done you a terrible disservice with his attitude toward nerve pain meds. It shows he has no understanding of how debilitating nerve pain can be. I’m very sorry for that.
There are two classes of nerve pain medications - anti-depressants & anti-convulsants. Within these two categories there are families of medications & within the families there are many “offspring” i.e. meds that are related chemically but are not identical. Because of the variety of nerve pain meds available, most people are able to find something they are able to take which knocks the pain down but doesn’t have a horrible side effect. The process of finding what works best for you may take a few months, and under the guidance of the right doctor, you would not have to live as you are now. Can you get an appointment with a neurologist? That would be the specialty who would likely be able to help you now. We do have members who are taking nerve pain meds for residual nerve pain.
Please don’t give up. You’re still in early healing post op. There is a great likelihood your current level of pain is temporary. It took about 6 months for some of my symptoms to disappear. Your body is still inflamed internally as it tries to protect your surgical area during healing. As the swelling decreases, pressure on the nerves will, too, & you will likely start noticing a lessening of your pain. Please keep icing your surgical site & sleeping w/ your head elevated as those two things will help a lot. If ice doesn’t help, try heat.
We are here for you whether your news is good or bad.
So sorry that you’re still in lots of pain- but we’re here to support & listen, not just to hear good news, so don’t feel that your posts are too depressing! Feel free to come & vent here, often people can’t talk to relatives, we do understand here.
Personally, I’d consider seeing a different GP, & getting a 2nd opinion, as nerve pain meds do not all have bad side effects! I’ve taken amitriptyline & tolerate it well, many members have found meds that help. Kay’s given you some good suggestions too.
Ben’s Friends do have a Facial Pain group which has good info about medications- you could have a look there.
It is still early days, so please don’t stop hoping that it will improve, it can take months for nerves to heal.
Sending you a gentle hug & will be praying for you