Today has been 5 weeks since I had decrompression surgery. Should I still be experiencing this much pain? I still have swelling at the base of my skull, top of my neck; NS hasn't seemed concerned unless there's redness or fever. I alternate heat and ice like I've been told.
I've been alternating an anti-inflammatory (1 I've taken for years) and Hydrocodone/acetaminophen 7.5/500 as needed but it keeps me awake and I itch all over! I seem to mostly hurt in the afternoons or evening so taking this when I'm hurting prevents me from sleeping.
I called my NS about this on Monday. I told them I do NOT need anything stronger, just something of a different formulation so I can sleep and get relief from pain also. Wednesday they called in Hydrocodone/acetaminophen 5/500...isn't this just the same stuff?? I took it last night when the pain started and sure enough, I was unable to sleep and my itching started up again.
When I called them today, they said all of my options have been exhausted since I also can't use Tramadol because of the muscle relaxer they insist I take (apparently it suppresses respirations too much, especially if you take both; since I have asthma, this is a concern). So they said just OTC anti-inflammatories. Again I explained I've been taking anti-inflammatories WITH the Rx pain med and I'm still having pain. They again said all of my options have been exhausted, maybe try an OTC sleep aid.
I'm a wreck at this point. I'm hurting. I'm frustrated. I didn't think I'd still be in this much pain at 5 weeks post-op. I'm scared to keep taking the hydrocodone/acetaminophen combo since they said it sounds like I'm allergic to it, but I'm tired of hurting and can't stop crying.
Anyone else have pain for this long after surgery?
Thanks, Emmaline. Aleve usually works well for me on a normal basis. I've been on Mobic 15mg though (Rx). Taking Aleve or other NSAIDs causes my reflux to flare up really badly so we try to minimize my use of those, thus the Rx.
I'm not familiar with Arnica cream. Where can I find this?
. Arnica Gel has been incredible for me. It is amazing. I would recommend it to anyone. I use it on my neck 3x a day with pain & muscle relaxer medication. You are still healing. I agree OTC pain meds won't help your pain. You can always ask to be referred to a pain mgmt dr. They are always great & I have never had to explain to them about CM.
Thanks for your concern and input. I appreciate it! I've been going to PT 3x/week. They only do lots of stretches, a few isometric exercises, and just Wednesday added 2 new exercises with the band that strengthen my shoulders/shoulder blade area.
I'm confused about the massage. At my 2 week follow up visit, a different NS than who did my surgery came in. He said massage was fine, absolutely fine. But then yesterday when talking with my NS's nurse, she said to not get massage! Well, I had a gentle massage on Monday, while sitting backward in a chair (since laying down is still extremely uncomfortable for me, puts too much pressure on my neck). I think it helped with the muscle spasms I've been battling. She was gentle but worked my shoulders, upper back, upper arms, and all around my TMJ (I've been clenching like crazy since the surgery!).
Beeba said:
Most pharmacies are now carrying it but you may have to ask pharmacist. But any natural type store will carry it. Boiron is a good brand. Rub on a few times a day. I am sorry you are in such pain. I was still in a good bit of pain at that point but not to the extent that you are describing. Can you ask dr about getting so pt? If he agrees please only choose a sports med kind. And as Emmaline will attest to - this should be NOTHING more than massage and CLEARLY say nothing on spine. If they want you to do anything more than gentle static stretches (like say a push up) leave. Flat out heat, massage, nothing near spine muscles only. And progress to static stretches no weight bearing exercises. Good lunch this sounds pretty miserable.
So many of you like the Arnica cream! I've put it on our grocery list and when my husband goes to the store, I've asked him to look for it (wish I were able to just go myself; but that will come. one day)
TracyZ, today I spoke with my NS office again. They want me to continue taking the hydrocodone/acetaminophen BUT with Benadryl since I'm itching so much with it. According to them, I have no other pain med options (since Tramadol is out due to the muscle relaxer). I'll try this tonight, Benadryl knocks me out and makes me feel drugged/medicine-head like for days when I've taken it before so I usually avoid it. However, I NEED pain relief so I'll give that a try.
I was feeling very hopeless and down yesterday. Thanks, y'all. I think just hearing her say "all your pain med options have been exhausted" made me feel very hopeless and like there's no relief in sight. So even though they say there are no other meds to help me, I'm hopeful with the Benadryl added I'll be able to get relief AND sleep and hopefully stop this awful itching!
TracyZ said:
. Arnica Gel has been incredible for me. It is amazing. I would recommend it to anyone. I use it on my neck 3x a day with pain & muscle relaxer medication. You are still healing. I agree OTC pain meds won't help your pain. You can always ask to be referred to a pain mgmt dr. They are always great & I have never had to explain to them about CM.
May I ask which muscle relaxer you are taking? The reason I ask is because I came of Narcotics by my choice because the long term use affected my sleep patterns. I take Tramadol 3x a day with different muscle relaxers. What is the speciality of the Dr. prescribing your pain medications?
Arnica:
I am probably the last person to even give Arnica a chance. I have been on Pain Mgmt since 2001. My pain is never below an 8 on a 1-10 scale with 10 passing out with pain mgmt.(Medication, Nerve Blocks, Ablation,Massage Therapy, Clinical Hypnosis, Manual Medical Interventions from a DO pre surgical, Acupuncture, Oriental Medicine, Nutritional Counseling and limited diet, Buddhist Lotus Sutra, Meditation, Visualization, Biofeedback, Psychotherapy, Reiki, Bowenwork, and I am sure I left many therapies out)...I have tried it all I thought & was loosing hope. I honestly just tried it so I could still have hope that something out there could help my pain levels and muscle stiffness and headaches. It does honestly work. I use it with my medications and even my emergency medications. I am in awe of this gel. I did try the pills & pellets but am not sure how they worked because of my medications. I did not get the same relief from the pills or pellets, but that is just me.
Sounds like we are in the same boat. Its too bad that you can't take the Tramadol. I tried Oxycontin for a couple of days, but it is time released and taken every 12hrs....it wears off in half the time so I gave up on it. Maybe it will work for you, be careful because its heavy duty and addictive......needless to say, like all painkillers! Have you been exercising your neck...side to side, rolling, etc? I have been using ice packs for pain and heat for soreness.... especially when I drag myself out of bed (literally). Every morning feels like I just got out of surgery and I'm 90yrs old....eventually it gets better. I have been using Tiger Balm which is not as stinky as the Bengay and Icy Hot
I appreciate your input. I'm supposed to talk with my NS's nurse again about whether or not gentle massage is permitted. We'll see!
Beeba said:
Honestly I don't know what the "official" answer is on this one. But I do know what helped and what hurt and what I missed after my first surgery. I say if it helps do it. But I would strongly avoid your spine. Muscles around are good but not the spine. Jmho. It sounds like your pt is a good course - similar to mine there. But do they do massage to loosen before stretching? Static exercises and stretching good - weight bearing not so good. This is all just my experience please talk with the professional.
I don't mind you asking at all! I'm on methocarbamol 750mg (generic Robaxin) and all of my meds (muscle relaxer and pain meds) have been prescribed by the NS who did my decompression almost 6 weeks ago. They said the muscle relaxer is very mild but shouldn't be used with Tramadol (brief internet research confirmed it may suppress respiration too much, and I have asthma too). After talking with their office again on Friday, they said the only option I have is to continue the hydrocodone/acetaminophen 5-500 but take with Benadryl. Apparently my itching isn't considered a *true* allergy but the Benadryl is supposed to help the sensitivity I have to something in it's formulation. Usually Benadryl keeps me feeling doped up and like I'm walking through molasses. However, taking it with this stuff is almost like not taking it at all! I'm sleeping some better and the itching is less. But thankful I don't have that medicine head like I usually do with Benadryl.
Girl, after reading your story I feel absolutely horrible about complaining!!!! I'm assuming my pain is "normal" post-operative pain and I'm hoping it will go away. I can't imagine living with your level of pain and for so long!!! :( (my pain is probably 4 or 5 on the scale, with spikes to 6 or 7; just been constant, no full relief even with all the pain meds since surgery; I'm worn out from hurting, thought it would have subsided by now). My heart goes out to you, for sure!!!!
OH, and I finally got the Arnica cream today! It seemed to help for a while, I'm going to reapply, even though the deeper pain was still present. SO glad y'all mentioned it to me!
Thanks for your input, your tenacity, and your willingness to help others!
~Lindola~
TracyZ said:
Lindola,
May I ask which muscle relaxer you are taking? The reason I ask is because I came of Narcotics by my choice because the long term use affected my sleep patterns. I take Tramadol 3x a day with different muscle relaxers. What is the speciality of the Dr. prescribing your pain medications?
Arnica:
I am probably the last person to even give Arnica a chance. I have been on Pain Mgmt since 2001. My pain is never below an 8 on a 1-10 scale with 10 passing out with pain mgmt.(Medication, Nerve Blocks, Ablation,Massage Therapy, Clinical Hypnosis, Manual Medical Interventions from a DO pre surgical, Acupuncture, Oriental Medicine, Nutritional Counseling and limited diet, Buddhist Lotus Sutra, Meditation, Visualization, Biofeedback, Psychotherapy, Reiki, Bowenwork, and I am sure I left many therapies out)...I have tried it all I thought & was loosing hope. I honestly just tried it so I could still have hope that something out there could help my pain levels and muscle stiffness and headaches. It does honestly work. I use it with my medications and even my emergency medications. I am in awe of this gel. I did try the pills & pellets but am not sure how they worked because of my medications. I did not get the same relief from the pills or pellets, but that is just me.
When I read what you said: "Every morning feels like I just got out of surgery and I'm 90yrs old" I was like "that's me!!!" and so I was much relieved to keep on reading and you said "it gets better." Thanks for your honesty.
I've not been on Oxycontin at all. Just on Vicodin now, with Benadryl to help the itchiness and sleeplessness.
I'm doing lots of stretches, shrugs, rolling, etc. My PT is doing what I consider a great job with my stretches and iosometric exercises. They understand my limitations and are adjusting the exercises to what I can do while also pushing me just enough to help get my strength back up. The ice and heat are also very helpful.
I hope you continue to do well. How long ago was your surgery??
~Lindola~
chiari1 said:
Sounds like we are in the same boat. Its too bad that you can't take the Tramadol. I tried Oxycontin for a couple of days, but it is time released and taken every 12hrs....it wears off in half the time so I gave up on it. Maybe it will work for you, be careful because its heavy duty and addictive......needless to say, like all painkillers! Have you been exercising your neck...side to side, rolling, etc? I have been using ice packs for pain and heat for soreness.... especially when I drag myself out of bed (literally). Every morning feels like I just got out of surgery and I'm 90yrs old....eventually it gets better. I have been using Tiger Balm which is not as stinky as the Bengay and Icy Hot
I would definitely call a pain management dr. Most NS/neurologist don’t feel comfortable prescribing anything heavier then Norco, but believe me, there is plenty out there. Anything stronger requires a special type of prescription called a triplicate, which most drs wont write but there is no reason you should live in such pain. Hope you find relief soon.
I had decompression surgery Dec 27th.I was hoping to be normal by now, but I'm still tired all the time and my lower back is in pain especially in the morning. I'm curious. You had mentioned itchiness? when did that come about? I started having problems with hives that got so bad that I started bleeding. I was referred to an allergist who gives me 2 shots every four days for allergies; mainly wheat. I was tested negative for Celiac.
Thanks, Rachel. I'm assuming it's just post-op pain since it's getting better; I'm taking fewer pain pills (with Benadryl, of course), so I'm thankful for that. I have no problem at all seeing a pain management specialist though if this persists.
Rachel said:
I would definitely call a pain management dr. Most NS/neurologist don't feel comfortable prescribing anything heavier then Norco, but believe me, there is plenty out there. Anything stronger requires a special type of prescription called a triplicate, which most drs wont write but there is no reason you should live in such pain. Hope you find relief soon.
Chiari1, so you had your surgery about 1 week prior to mine. Interesting. and you say your lower back is hurting...so is mine, but just on the right side. I've attributed that to sleeping in odd positions since I still can't get my head/neck comfortable while lying down.
My itchiness started about week 3 or 4 post-op. I write down each time I take my pain meds and my muscle relaxer, and through this charting I started noticing the itching was worse with 30-60 minutes after taking the pain meds. That IS strange that you're having the hives! You poor thing!!! So far I've only had itching, no hives, no bumps, no redness, so the NS said it's not a true allergy, just a "sensitivity" to the formulation of the pain meds, thus the Benadryl has been added.
Are you getting relief with the allergy shots and avoiding wheat?? and to clarify: did your hives start before or after your surgery?
I wish you the best!
~Lindola~
chiari1 said:
Lindola,
I had decompression surgery Dec 27th.I was hoping to be normal by now, but I'm still tired all the time and my lower back is in pain especially in the morning. I'm curious. You had mentioned itchiness? when did that come about? I started having problems with hives that got so bad that I started bleeding. I was referred to an allergist who gives me 2 shots every four days for allergies; mainly wheat. I was tested negative for Celiac.
Well, I hope it all passes in time...we at least have that :-) My allergies, difficulty swallowing and sleep apnea started right before the 1st surgery 3.5 years ago.
Ugh. I keep hearing people talk about their FIRST decrompression surgery. I really do NOT want to have to go through this again!!! I sure hope this one does the trick for you! hang in there :)
chiari1 said:
Lindola,
Well, I hope it all passes in time...we at least have that :-) My allergies, difficulty swallowing and sleep apnea started right before the 1st surgery 3.5 years ago.
This all sounds so horrible I’m scheduling my first surgery and thinking maybe I should just wither away because y’all sound more miserable than I am now. Have y’all had any types of improvements? Honestly
Brandi, I'm just now 6 weeks post-op so I can't answer a lot of questions you may have. However, in the extensive research my husband and I did prior to my surgery, the positives tend to outweigh the negatives. One prevailing theme we kept seeing too was that the results take time, lots of time. One great thing I've already noticed is that I no longer have the debilitating "hold your head in your hands" headaches when I sneeze, cough, strain, laugh too hard, etc so that's a big plus! I guess that means the spinal fluid is flowing correctly now?? I can only hope!
When I initially started this discussion, I was 4 weeks post-op and my NS seemed to think I shouldn't be having any more post-operative pain at all, so I wanted the advice and experiences of others who have lived through this.
I'm happy to say at 6 weeks post-op and I'm down to just 2 pain pills a day--yay!!! and I plan to return to work the end of this month (I have a physically demanding job, & am on the road 2 hours a day commutting so we had to delay my return a bit for me to keep building up my strength again)
I honestly think too that people who had fantastic results are off happily living their lives, not even thinking about this anymore!
I wish you all the best!!!!!!
~Lindola~
P.S. prior to my diagnosis, I knew of 1 person who had Chiari 1. She said having the surgery was "the very best thing I've ever done in my whole life!" so that's what's kept me going and encouraged me too. Good luck. and there really are positive stories out there. .
Brandi said:
This all sounds so horrible I'm scheduling my first surgery and thinking maybe I should just wither away because y'all sound more miserable than I am now. Have y'all had any types of improvements? Honestly