I am 6wks post op from my second surgery. After my first surgery this was around the time I started to feel better, this time is different. First my fatigue is horrible and will not go away. I look sick, pale, dark circles under eyes. I am curious if I could have developed anemia after my surgery. Also about four days ago I started having new pain. My whole jaw is sore, around my ears is sore. I was eating today and got pain in my cheek and bridge of nose.(never had that before) My recent surgery was on the left but my right started acting up. I am having trouble eating. I am having what I think is pulsatile tinnitus. I hear my heart beating in my left ear like a wooshing sound. It is made worse with certain movement and I cant lay flat or it really acts up. I noticed when it is doing this I feel weaker and more sick. I have had to lay propped up again which makes my lower back hurt. I have had sharp stabbing pain that comes and goes on the left side of the neck. I feel like I am a wreck.
Last surgery I felt like I was healing, even though I was in pain from the surgery. This time I just feel horrible. I am trying to remain hopeful and I tell myself most of you would tell me nerves take time to heal but I am and starting to become fearful. I understand it takes awhile to heal but I feel like I am going backwards not forward. I thought about seeing primary care Dr. Just to rule out anemia or a problem with the artery but I am not sure I have the strength to deal with more drs. I have a shortage of good drs where I live and finding one that will listen and is not ignorant is hard. I keep hoping to wake up and have a good day, that would at least give me a little hope. Thank you for reading. I needed to get all this out of my head.
WOW! I’m so sorry you’re seeing regression rather than progress w/ your healing. Did you talk to your surgeon about how much of the styloid he removed? I wonder if a CT scan w/ contrast would be helpful at this point? Yes, a test for anemia would be a good idea. It’s just a finger prick. You get an immediate result. I am slightly anemic for who knows what reason so I take a multi-vitamin w/ iron & that seems to stay on top of that problem. Perhaps seeing a nutritionist to help you w/ nutrient & gut flora balance might help? I do take a fair number of supplements because my system was depleted. The thing that’s made the biggest difference for me was adding a vitamin B complex. When I don’t take it for a couple of days I notice a huge decline in my energy level. I did work w/ a nutritionist for almost a year so these supplements were added upon her advice. If you’re interested, privately email me, & I will give you her name/email. She works by video conference or phone - not out of an office. She helped me tremendously.
So sorry that you’re feeling so rough- it’s reasonable to expect that you would be feeling some improvements by now…have you read up on First Bite syndrome- what you’ve described doesn’t sound exactly like it but maybe…if you’ve had a long time not being able to eat well because of ES symptoms & then 2 surgeries it may be you’re anaemic, so testing for that is a good idea.
A follow up with your surgeon would be a good way to go as well, especially as you’ve found new symptoms like pulsatile tinnitus have started.
It may be a bit soon to start thinking about nerve pain medications, but it might be something to consider in time- one member recently posted that they’d had problems a while after surgery but was told gabapentin can help nerves to heal & had improved with that. (On my phone at the moment so can’t search for that to give you a link, sorry).
Thinking of you & will pray that you heal soon. Let us know how you get on…
Wendy- I believe my original CT was with contrast, they did not mention anything in the report. I assume my surgeon did what he did last time and took the styloid back as far to the skull as possible. I will have to ask. I am taking vitamins right now but maybe a nutritionists would be good. I know when I do not take my multivitamin I do get worse. Can you send me the info? Thanks.
Jules- I have been hesitant to contact surgeon bc it will take a while to get into see him and in the past he didn’t seem to have any input in regard to lingering problems. I am not sure it is first bite. It feels like my jaw has been punched rather than a sharp nerve pain. I remember reading the post about the gabapentin. That maybe an option. I have been afraid that I had the ES for so long that maybe it has caused some permeant damage to my nerves.
I know all too well how it feels going to more doctors and not having the energy to see more doctors, knowing it will probably be pointless, but I think you need to. It is perfectly logical and reasonable to have a followup after surgery if you are feeling the way you do. I have doctoer friends who have been told it’s all fine only too keep pushing, knowing something was wrong, to find out the specialist was very wrong and they needed treatment.
In my experience having Eagles syndrome, which is not common, and Chronic Idiopathic Neutropenia, also not common, I pushed. Ive always had to push. I know it is hard when you feel like a pile of crap, but it sounds like you have very legitimate concerns that need at least need to be ruled out.
I might approach it by messaging your surgeons office and telling them how you are feeling and that you are going to see your general prac. first to rule out some basic things, but im having…list you symptoms and say you will be back in touch with them if all tests checks out fine. This will prompt them to either say they want to see you or not. I do want you to have a CBC done with auto differential at least, at the gen prac. That is basic testing and tell him your friend felt you should at least have that done with how you are feeling and after surgery. Tell the general prac you think, with how you are feeling, getting imaging done and seeing the surgeons office might be a good idea. They always want to pawn hard cases onto the next doctor, so he will agree and you can tell the doctor who did your surgery, honestly, that he recommended that he see you and imaging. Usually, when docs hear another doc recommended it, they will be more inclined and willing to do it and act like they agree. You don’t have to do this exactly, but as long as you are getting testing it will at least rule out infection, and other things you mentioned giving some peace of mind hopfully.
Sorry for the long message. Im messaging on my phone so cant look back at what i wrote easily and have crazy kids, but hope this helps. I just have been through a lot and I feel for you so much!!! You are never alone in your suffering.
I’m so sorry that you are having such complications. Please follow up to see if anything can be done. I haven’t had a surgery as I don’t trust the Kaiser doctors or system to care about what happens to me. The sharing of experiences on this platform helps to encourage me and helps to make me aware of what to look for in terms of medical intervention. Thank you for sharing your experience and my heart goes out to you as will my prayers for your complete recovery.
Sorry you are having new pains. I have learned that each surgery is very different. At 7 days post op on my second one I have kind of the same pains you are describing. Even my top jaw hurts and some of my sinus cavity. Never had that before. First bite too. Just remember we are better off with them out.
I_am_Groot, I agree with you that we are better off without them. I still consider my surgeries successes. It helped a lot with my pain. I use to have eye migraines all the time. It was so hard to eat. I had horrible shoulder pain. I use to wake up in the middle of the night feeling like I was dying, that has stopped since this last surgery, I hope that does not come back.
I think the hard part for me is some of my symptoms have not resolved and they are the ones I thought would. I was hoping not to be in pain everyday after this last surgery. The constant fatigue and nerve pain in my head is very hard to deal with. I have been tested for everything and have tried everything for pain(except opioids, they make me very ill) I was really hoping that this was it and all would be well. My mother says I need to give it more time. I hope she is right but for now I am overwhelmed with feeling bad.
I applaud your mother & agree with her. It is very unsatisfying to not have immediate results when they’re expected. Waiting & waiting & waiting to feel better tends to inspire thoughts of hopeless/helplessness. I totally get that. Though I know the sound of “six months from now…” sounds like an eternity, my experience says you’ll be a whole new person by then. Each of us heals at a different rate & w/ nerve/vascular/muscle injury, improvement comes in baby steps not leaps & bounds.
I want to reassure you that your body is working hard to heal itself. I know you’ve read this over & over on here, but you can help your body heal by listening to it & starting back into your daily routine step by step. If you find you feel worse after a more busy/active day then scale back for a couple of days & add activities in a little more slowly. Being somewhat active is important though as it helps circulate our blood, exercise our hearts/lungs, lubricate our joints, & stimulate our muscles & minds.
Challenge: Find something to be thankful for each day of your recovery & try to focus on that rather than your pain. Positivity also helps healing.
I hope you notice a change in the direction of healing each day going forward.
Agirl, I want to encourage you to keep on fighting the good fight. I gave up so many times after I had my surgery. This surgery is not for sissies. I don’t know how you are in your faith or believing in God but, that is the only thing that kept me going. I went through so much but, I survived it…Right after my surgery, I also felt horrible and if it weren’t for my devil busting, praying friends, I would have not made it. Right after the surgery, I too had to sleep for about 4-5 months sitting up on my couch because too much saliva being produced and fear of swallowing properly. I was alone allot of the time because my husband worked long hours and my two sons went to school and worked.
So, the ol’ enemy had plenty of time to mentally torment me through fear and isolation. I was there all day alone and only I knew what I was going through. You see, the enemy takes that lone sheep away from the flock and torments it and eventually kills it. I slept allot and I was alone so, I started questioning myself, “Had I made a mistake by having this surgery?” The pain was so intense so, it is through “pain” that he controls our lives. I lived with pain for 17 yrs., before I finally got diagnosed.
A week later I had both sides removed. When you are at home alone, play some healing music on the internet. I have some smack down, faith walking friends and I would cry to them and they would listen to me and one of them finally came over with 2 of my other girlfriends and they anointed me with oil and they also anointed my entire house and last thing I recall was one of them opening the back door and telling that spirit of fear to get out of the house and then she slammed the door! At that time, I did not have internet but, one of them brought me a cassette player and healing tapes to listen to. THAT was a turning point in my recovery. It took me about 5-6 months to finally being able to eat a small kiddie burger from McDonald’s and I cried because nothing got stuck and nothing sticking me.
I pray that Yah will hear your prayer and make you whole. Don’t give up. It’s a process. One day at a time. Fear controls people and you have to defeat it and stay close to the Shepherd. I think I also was somewhat anemic too because there were so many foods I could not eat. I lost 40 lbs. after the surgery.
Thank you for your words of encouragement. I do have faith in God but it has been a struggle. The last four years of my life are a blur of pain. The ES pretty much has made me not able to do anything. I had to quit my job and because of feeling bad so often I lost any friends I have other than my family(but they all live far away from me) I also lost my singing voice, which I was a songwriter and went out and performed regularly, it was not a hobby but my life. Loosing music and singing for me would be equal to someone else loosing their ability to walk or eyes or hearing. I have had no hope these last couple years till I found out about ES. This last surgery I really felt would heal me. This is why it has been so hard. If I do not get better I do not have much of a life. I know for some ES only affects certain aspects of their life, with me it leaves me unable to do anything. I try not to let fear get in the way but I do know sometimes God does not choose to heal. I am not giving up yet, as I still have healing to do but I do find it hard to hope for much these days. Thank you again for your support and prayer. It means a lot.
Been praying for you too, & hope that you draw closer to God in this time of waiting for healing…make sure you take it easy & accept any help offered by your family.
Not everyone finds symptoms resolve straight away, have you read Musicgeek’s posts? It’s been a long journey for her too.
God Bless, & hugs too.
I don’t know if you’ll see my message but having had surgery just a few weeks ago and feeling awfully down about the pre-op symptoms still being very present, these words youve shared sure do bring a lot of comfort. So perfectly shared and I’m so very glad to have come across it at this time.