As most of you know I had surgery in October and have had a really good recovery with very few issues.
First off, a month and half ago I had a sore spot on the right side of my skull where it meets the neck. Tender to the touch and I kind of thought it might be a swollen lymph node because I was also having sinus issues. I had posted here, got some advice, and called the doctor who said to keep up my neck exercise and check back if it worsened. Well it went away and I was back to normal until last week. Last week I started getting the tender spot from a month or so ago again, but now the whole back of my head will hurt if I move certain ways or if I lay directly on my head. Laying down definitely makes the pain worse and it will slowly go away once I sit up. If I lay on my side is very mild and I can sleep but if I turn over with my head flat it wakes me up and I have to sit up for until it slowly subsides.
I called the doctor and was again told it was probably inflamed muscles and that laying down puts pressure on them and makes the pain worse. I was told again to do my neck exercises and take an anti-inflammatory (which kill my gastritis). If it's still here next week they will make me an appointment but since I'm 5 hours away they want to hold off and see if these measures help.
So anyhow for people who have had the surgery....does this sound normal? Could inflamed muscles cause this pain? Has this happened to anyone else, especially this far out from surgery? I guess I just expected more pain early in the recovery and thought I was over this by now.
*Note for people who have not had surgery...Even with this pain I feel 100 times better than before surgery! I'm sure since this is a major surgery that these types of aches and pains are somewhat normal so I don't want to scare anyone! I still have no regrets!
Beeba- I'll look for the article! That sounds interesting! My mutant gene has only failed me once on the pain tolerance and that was my tonsillectomy a few years back. I was dying...even a sip of water was like swallowing razor blades!
Actually that's one reason I'm a little worried about this headache. I don't know how things are supposed to feel so then I worry that things I think are minor annoyance could really be serious and I'm getting wrong pain cues, you know?
Forget it I'm joining the tit club with y'all! I have zero tolerance for pain and don't even pretend to be tough if it doesn't hurt ask me but if it does I will let you know:)). I will sleep off pain give me ANY other illness but a pain driven one, but it's our cross to bear girls, ... BUYAAAH.
Thank you for adding the note to those of us who haven't had surgery ... my heart sinks every time I read a title that says "post-op new symptom" or "post-op pain" etc. After 6 abdominal surgeries, I had sworn off going under the knife again ... now this. I'm glad to hear such good reports about this kind of surgery.
Your surgery was done in the same month as mine.I’ve been up and down but it’s been easier than I thought it would be.I still have some headaches and symptoms returned for a short time,scared me to death.I guess we still have a ways to go,hopfully this will settle down again,it’s not like any of my other surgeries.I’ve been told it will take a year.Hopfuly this will pass and things will improve.I have experianced some really good days in the last week,but then things get worse some days,today my head is hurting.I guess we’ll hold on and ride this out.You have to go with what your body is telling you.If it goes on it sure would give you some peace of mind to go back earlier to the NS.Rest and see what happens…good luck.
I also meant to say that I would do this all over again,the good days are beginning to happen and they are a blessings from God!So glad to have some real hope.
Lynn- I'm not glad that you are having headaches but since we are in the same place it sounds like this is a part of healing. I agree the good days are more frequent and make it all worthwhile!
I’m 2 yrs post op. and have the same feeling in the sub occipital area in the back of the head. It began shortly after the surgery. Laying my head down is painful.I did contact my NS several times but they seemed to disregard and think it was just healing. I have tried several types of treatments also but it seems to still continue. I recently went but back to my cranial facial dr. And had nerve blocks done as they helped in the past, when he inserted the needle I could hear the scar tissue crackle. I’m assuming that it is scar tissue that’s possibly pushing on a nerve. Meeting with dr. On weds. Next week, hoping we can figure out what we can do. I still feel I’m better than prior to the surgery. Please keep me posted if you figure anything out!
I’m 2 yrs post op. and have the same feeling in the sub occipital area in the back of the head. It began shortly after the surgery. Laying my head down is painful.I did contact my NS several times but they seemed to disregard and think it was just healing. I have tried several types of treatments also but it seems to still continue. I recently went but back to my cranial facial dr. And had nerve blocks done as they helped in the past, when he inserted the needle I could hear the scar tissue crackle. I’m assuming that it is scar tissue that’s possibly pushing on a nerve. Meeting with dr. On weds. Next week, hoping we can figure out what we can do. I still feel I’m better than prior to the surgery. Please keep me posted if you figure anything out!
Thanks for the input. It's nice to know I'm not alone. I go for my post-op CINE MRI next month sometime. I will let you know if it shows scar tissue or anything! Let me know how your appt. goes!!!
Hello, my surgery is May 16th and I'm nervous but if it hurts just to lay down how is it 100 times better. I'm just curious, what other improvements are expected. Thank you.
How did your Nerve Blocks go? I have had many but do not have a lot of scar tissue, Were you having Mgr or Minor Occipital Nerve Blocks or Cervical?
Anglyn,
I don't think it's muscular. Do you have a good NL or Pain Mgmt Dr in your area? My NS is 5 hrs away also. My Spine & Pain Mgmt & NL (which is incredible even for a NL) keeps me from having to go to Pittsburgh. The Pain Mgmt Dr's do Nerve Blocks. The Arnica is a God send and I will admit it to anyone. I really hope you feel better. I totally understand.
Beeba,& Brandi,
Nothing brings my pain under an 8 on a 1-10 that leaves me able to speak. This is the most unfair part about Chiari. I truly pray everyday for new pain medications.
Cphilly....This is an older post and whatever was causing the lying down issue has since passed. I still have a slight tender spot on the right corner where my head and neck meet and I honestly think it has something to do with overexerting myself with workouts. When I feel that spot get tender I back off and go easier on workouts and it seems to settle down. As for still being 100 times better what I mean is that prior to surgery I couldn't do anything without pain. Bending over, straining, standing up too fast, sometimes just walking made it feel like my brain was bouncing around. Not to mention that my hands and feet stayed numb, I had random spots that felt like I was being burned with a match, I was dizzy, off balance, light-headed, etc. So compared to all that pain when laying flat on your back isn't so bad! lol :)
As to what other improvements I've seen...numbness vastly reduced, no dizzy/light-headed spells, no burning spots, my fatigue is so, so, so much better, decreased headaches...I work out almost daily now. On the weekends I often go for 2-3 hour hikes without issue! I could not workout for 2 years before surgery. I went home from work and went to bed. Weekends were spent on the couch. So while I'm not 100% cured and once in awhile I'll have a bad day I do not regret surgery, it changed my life for the better!
Tracy...No real pain management places around here but I've found some relief from not working out as intense and using Arnica. I honestly don't think the pain was muscular either...honestly it felt more nerve related. I wonder if maybe some of the workouts I was doing could have been causing inflammation that was affecting my healing nerves? Just a random thought, lol. Also I have chronic mono so I get lymph nodes flaring in the weirdest places and according to Dr. Google there are lymph nodes in that spot so that could even be the cause! I'm waiting to hear when my appointment is for my follow-up CINE. Monday makes 6 months!!!
I’m also 5 months out and I still have pain and soreness on my left side at the base of my scull it almost feels like there could be some fluidI still have some head aches,also have had voice issues,swallowing,and shortness of breath.My NS says he thinks it will subside but I’m not sure.I will say that most of these symptoms are getting better,but my voice comes and goes.You are at the same place I am,we will have to be patient and wait to see what will happen.I’m not sure,but it might be a part of healing.Dr. Rosner has told me to expect this to take a year to start to realize the changes so I guess we’ll have to hold for a long wait,but so far things are better and I’m pretty excited,hope things keep getting better for you too.Keep in touch since we’re at the same place in this journey.