So I am having my surgery tomorrow morning and I’m freaking out about getting pain relief after surgery. I have EDS and I’ve been on narcotic pain medication for over 10 years so I’m terrified my tolerance will be too high and won’t have any relief. Anyone have any suggestions as to what meds helped them after their surgery? Thanks!
I don’t have ‘medicine’ suggestions but may I ask where your surgery will be done?
At Doctors Community Hospital at 7:30am with Dr. Henderson.
Best wishes, Addy, with your surgery tomorrow. Medications affect us all differently, so it is highly individualized. Have you expressed your concerns to your medical care team? I suffer from Fibromyalgia pain which it is notoriously difficult to treat and so, I have developed my own coping strategies such as mindfulness and relaxation and breathing techniques… Another avenue you may consider as well. Stay positive and please keep us updated here.
Send us some feedback - how you doing - was so thinking of you as my son had his on 17th Nov so we lit a candle for you on 16th.
Let me know how you feeling - the operation for my son was so traumatic and I don't think I will ever be the same.
LOVE TANNER AND VANESSA
Hi there Addycakes. I had my surgery on Nov. 12th. They kept me in the hospital an extra day because they couldn’t get my pain under control. I have also been on narcotic pain needs of and on, but mostly on the last 4 years. I was on 4 Norcos a day for the past year. I was on dilaudid the first day, then they tried to put me back on 1 Norco every 4 hours and the pain immediately went out of control. Then they had to put me on the dilaudid pain pump for a day. Then they tried the Norco and it went out of control. Then they put me on Percocet, and it was still out of control. Then they did morphine for breakthrough pain two hours after the Percocet. So every two hours I was either getting a Percocet or morphine. The morphine helped me more than anything.
They released me with Percocet and my NS made it clear he won’t prescribe stronger. The pain got out of control, so the day after I was released, my husband called saying the pain is out of control and he’s been having to give me a Percocet every two hours. My NS okayed us to keep doing that, but all messages were related to and from his RN. We asked if he would refill when needed, since we will be going through the meds faster and his RN said yes. That said, when I’ve been able to stretch the time out further, I have. Otherwise, I would have run out at the 10 day mark (his original prescription was for a 20 day supply).
I am sure to run out by tomorrow, on Thanksgiving day. My husband started calling the NS office on Monday. We waited to hear back and nothing. So today, Wednesday, hubby called followed up a few times today. The RN called me at 4 pm to tell me that the NS will not be providing me with any additional pain medication and he will be discussing it with me during my appointment on Dec 7th.
So, I had less than an hour to put a message through to my primary care physician to see if I can at least get my normal Norco rx, because I ran out the day of surgery. It was the day I was scheduled for a refill, so I have no back up there. It’s about 4:30 pm on Thanksgiving eve and I haven’t heard back from my PCP.
I had some of the same fears you had and unfortunately those fears came true. I feel like we set off a red flag with the Dr office because the RN sounded really annoyed when she called.
Maybe it was the 3 calls my husband put in today. But the operators kept telling him it looked like it was going through and to try back in an hour. We were both afraid going into the holiday weekend without any pain meds when I’ve been in severe pain as it is. But, it appears that’s exactly what’s going tulip happen.
Sometimes it seems that our fears become our self realizing prophecies.
I’ve been averaging 2-6 hours of sleep a day. Most of it is during the day and from sheer exhaustion. My pain is so much worse at night and I cannot get comfortable. Before surgery, my right side gave me the most trouble. Now it’s the left side. The left side of my head is in a ton of pain and one area feels swollen. I get sharp, pulsating, stabbing pains that run along the left side of my head and neck, getting worse upon standing. It hurts to lightly run my fingers on my hair in the left side. I don’t look forward to washing my hair, as it is extremely painful.
Perhaps a trip to the ER is warranted. Does anyone have any thoughts on this?
Adriana, if you’re concerned to the point you need to ask, going to the ER seems entirely reasonable. You know your body best. I hope you find relief soon. Please let us know how everything goes for you.
Thank you, Laurie. My husband will likely be taking me Friday. I will stretch what I have as long as possible.
Adriana, I’m so sorry you have to be treated that way. It really sucks that addicts have made it so difficult for people who really need pain medication. Umm hello, you need pain meds if you’ve had your head cut open and part of your skull cut off! Just pisses me off!
At this point I would totally go to the ER tomorrow and be honest with them and take all your prescription bottles with you. If you just stop the medication, you will go through withdrawl and your pain will be 10 times worse on top of withdrawal symptoms. You need to be gradually tapered off the meds.
Another thing I would do is start looking for a pain management doctor if you don’t already have one.
As for myself, my surgery on November 16th went well. My surgeon who has done tons of decompression surgeries said I had probably the smallest foramen magnum he has ever seen. So I feel positive that the surgery will help relieve a lot of my symptoms. My 2 day hospital stay turned into 5 days because of the pain management. I had a wonderful PA who worked with me to get my pain under control. We came home Friday and things were going well. Not gonna lie it hurt like hell but knowing it would go away eventually helped get through it. Then Sunday morning we noticed leaking blood and pus from the incision. Doctor said to go to the ER. We waited 3 hours in hell! Every time I got up I started puking and the headache was the worse ever. The next morning my surgeon came in and told me I had to go in for a 2nd surgery because I had an abscess and needed all the fluid to be drained. He put in a drain which should be removed on Monday. My 2nd surgery was beyond hell. I couldn’t get out of bed for 2 days. They also screwed up my pain management plan by giving me a pump and took away all my other meds. The pain pump was horrible for me because I couldn’t sleep because I had to keep pushing the damn button every 15 minutes. Finally by Wed I started feeling better and they got me home last night at 8pm. I have a PIC line in my arm so I can get iv antibiotics at home. So even after going through the worse pain in my life, I am positive and excited to start to feel better. Good news is I don’t have that stupid annoying headache I’ve had for 2 years straight!
I now know the meaning of being a chiari warrior! Stay strong and keep fighting! I’m fighting for my babies and wonderful husband!
Hi there Addycakes, thank you for checking in with us and reaching out to Adriana when you are feeling so rough post-surgery(ies). Your attitude is great and I hope your recovery now progresses swiftly. Kindest, Jules
Hi, Addycakes! Sorry you had to go through those troubles, but happy your headache is gone.
Best wishes to you! :)
Had mine done the 16th too. Hurts but beatsble. Percocet and Valium maker feel sick but effective, balance still off have burst PT and OT coming to house. Swallow study the 25 and we will see if any improvement. Vision worst. Want up wait six Werks for swelling to go gown. Spine fluid running beautiful. Now a waiting gain to see of damage can be repaired. It won’t get worse. My symptoms are all on my left side. Go to NYC wed to see surgeon . Keep you posted. Wad in five days too. Home a week and thank god no complications. Lots of friends and support though, good luck, keeping you in my prayers.
Wow Addycakes! I am surprised and thankful that you replied after all you’ve gone through! In 2008, I had a PIC line in for a month. I have had very serious right ear problems, including tumors and infections. Long story short, my ENT Dr., whom I had since age 4, kept giving me different antibiotics over the course of 2 years to fight a chronic infection. The last stop was the PIC line and when it didn’t work after a month, he wanted me to do it for 3 months!
I said no offense Dr, but I don’t think the human population would appreciate me being a living, walking MRSA incubator. How about you get me to the best ENT surgeon in town.
He did, and within a week I was in for surgery. For the better part of 2 years, I smelled the infection from inside my right nostril. I knew something was wrong. And, low and behold, I had a true bone infection that had eaten nearly through the temporal bone (I haven’t had a mastoid bone since I was a child). Antibiotics are carried through the bloodstream, not bone marrow. I had to have my right middle and outer ear reconstructed. Surgeon said I was a week or two from becoming a meningitis case.
I’ve been prone to infection and very apprehensive about it. My first and only UTI was when I was 17 and it turned septic. I nearly died on my 17th birthday. I conveyed my fears to my NS, and gratefully, I seem to be doing great as far as no infection goes.
I went to ER and they only prescribed me 10 pain pills to get me through to Monday and suggested I try being a squeaky wheel with NS office or my PCP. The PA would only give me non narcotic pain meds while there and kept me overnight after an 8 hour wait to be seen. Needless to say, I was feeling affects of abruptly having nothing for over 24 hours.
My husband is due to return to work tomorrow, and the only opening to see my PCP is 7:30 am. Trying to find a ride, since I can’t drive. As far as my NS office goes, they made it clear they will not be prescribing me more meds and will be discussing it with me during my December 7th appt. Definitely seems to be I’m getting a label because we tried a few times to get an answer on a refill on Thanksgiving eve. It’s the only thing I can think of. When my pain was out of control, my husband got permission to give me 2 pills every 4 hours instead of 1. Therefore, there should be no surprise that I went through them faster than planned. Seems like they have an, “Oh well, that’s your problem, not ours” attitude.
My PCP is very conservative about prescribing pain meds, and I’m praying she will at least provide me with my pre-op prescription. Otherwise, my healthcare group is deciding to have me cold turkey off pain meds while I’m still in significant post-op pain. If this happens, I will not trust my doctors and will find another medical group.
Thank you for listening to my rant. I hope and pray for, your speedy recovery, Addycakes. I am sorry to hear that you had complications, but glad that it was addressed quickly. I wish you the very best!
How are you feeling Adriana?
Yeah Adriana, any updates? I have lots of updates myself. I’m currently in the hospital now since Thursday. I had half of my stitches and drain tube taken out on Monday and 2 hours lateŕ threw up. I then had developed a fever of 100.5 until Thursday morning when I woke up shaking uncontrollably. When I finally sat up I began to vomit and my hubby took my temperature which was 104.5. NS said go to hospital. At this point I’m simply waiting for an answer and fighting for pain meds. They said 1-3 more days possibly in this place.
Hope you are doing ok Adriana! This surgery is not an easy one so pain management is very important following it. My NS gave me a months supply of meds and a referral to a pain doctor (who believes in EDS! My previous one thought it was made up). She will hopefully wean me off everything when the time is right which is not now!
Keep fighting chiari warriors!
Awwww, addycakes, it's so frustrating to have a setback. I'm not happy that you're in the hospital, but I'm very glad that you are being looked after.
Get well soon!
Thanks Seenie! There is word I may be discharged today but I’m not sure they know what went wrong which is scary. I will keep everyone posted! Thanks!
Hi Amanda! So sorry, I didn’t realize I had a response on here. First of all, I am so sorry to hear about all of the complications you’re experiencing. This surgery can be traumatic in its own right. How are you feeling today? Do you feel mentally and physically well enough to be released from hospital care? Is your infection and pain under control? I’m sorry to hear you had to fight for pain meds. I think it’s obvious you’re going through a lot.
Beginning just a few days ago, I started to get some episodes of sleep here and there lasting 5-6 hours. Twice, I slept like that, going to bed much earlier (3-4 am). I’m taking advantage of whatever sleep I can get. Prior to this last week, I was averaging 2-4 hours of sleep at a time, even with Ambien, and nearly all of it was after 6 am, because the pain being so bad at night. I still find myself needing the Ambien most nights to get a decent amount of sleep if at least 4 hours. Thankfully, I don’t have terrible getting 1-3 hour naps during the day.
On the 30th, I saw my primary care physician (PCP) at 7:30 am. I explained to her the whole ordeal about the hospital discharging me when my pain wasn’t under control, the NS giving me the okay to double up on my Percocet rx (2 every 4 hours), then waiting until 4 on Thanksgiving Eve for his nurse to tell me he won’t be prescribing anymore pain meds and “he’ll be having a discussion with me about this at my next appointment.”
After much back and forth, my PCP gave me Norco (1 every 4 hours) to get me through today, which I have my post-op with the NS today. My pain isn’t under control, but it’s better than nothing.
And my PCP was nervous about giving me anything, since I’m still under the care of the NS. But, she saw the notes from the NS that he doesn’t prescribe again until the post-op appt. I find this interesting. First of, he only prescribed a 20 day supply when I was discharged from the hospital (which they kept me an extra day because they couldn’t get my pain under control. Hospital wanted to keep me longer, but NS said another day wouldn’t make a difference). Anyways, had I been able to stick to original rx, it still would not have covered me through to my post-op appt. Also, even with the NS permission to double up, I didn’t do so unless absolutely needed. Therefore, the meds lasted 15 days, in lieu of the 10 days if I doubled up the whole time.
My PCP thankfully had compassion and believed me when I told her that it our plan to wean me off the pain meds asap was still what I wanted. I told her I need to get through this post-op pain before I can endure the physical stress of withdrawal. I asked her to look at all the notes and my several attempts to be open and communicative with Sutter NS, ER Dr, etc. I told her I stayed within Sutter despite my lack of care, to prove I’m not trying to hide anything. Lastly, I asked her what the difference is between a drug seeker and a patient in desperate pain. She said it’s hard to tell. I then asked her if pain patients are seen as drug seekers until proven different, because that’s what I feel is the case. I said let’s make it really simple. I had brain decompression surgery just over 2 weeks ago. They cut through my scalp and neck muscles and the top layer of my dura. Common sense tells me this would cause a lot of pain for some time. You have been prescribing me pain meds for a number of years, and we have a level of trust. Why would I suddenly show behavior that the NS may have seen as drug seeking less than 2 weeks after brain surgery? Um, maybe because I’m in pain and I’ve been in pain. Seems simple and obvious to me. She agreed and said best she can do is prescribe Norco, to which I am grateful.
My husband is going with me to the post-op appt today and the NS and his nurse will be hearing a mouthful. I will be requesting he release me back to the care of my PCP and refer me to another NS closer to my home for any future NS follow-up.
I will be telling him that a patient/Dr relationship is a 2 way street that requires trust going both ways. I trusted him and his skills enough to cut into me and that’s a big deal. But my experience after, my pain, etc, he doesn’t know what that is unless I tell him and he trusts what I’m telling him. Pain is highly subjective and individual. 2 people can have the same surgery the same day and have 2 very different lengths of recovery, pain levels, and overall experiences. That’s where the trust needs to come in. I’ve now lost all trust with my NS and do not wish to work with him again. In fact, if I need another surgery, I don’t want to use Sutter. Thank goodness, I have a PPO.
My biggest pet peeve with doctors is when they think they know more about your body then you do, and they refuse to listen with an open mind.
My PCP, how I earned her trust was due to a thyroid med issue. I had severe cramping and diarrhea for 6 months and it was affecting my job and quality of life. Imodium wasn’t working, nothing was. She said it must be my IBS, and I said no, my IBS has always been constipation. I told her I thought it was my hypothyroid pills because like clockwork, 30 mins after taking it, my stomach issues set in and stayed that way until about 8 pm. She said that’s impossible and made me take a PPI, Prilosec. That didn’t work. She then told me I had to go back to my stomach specialist. He gave something like a Godzilla form of Imodium, a few different meds for IBS. Nothing worked, so he turned me back to the PCP stating he doesn’t think my issue is caused by the stomach. She then wanted me to go on a med for anxiety and depression, thinking my stomach was responding to my emotions. I declined. At this point, my blood work was showing malnourishment, because nothing stayed with me long enough to be absorbed. Next morning, I broke my thyroid pill in half and immediately my stomach was 70% better. I reported it to my Dr and again, she said impossible. I said I googled generic thyroid meds, and it’s not recommended to go generic. The FDA doesn’t regulate generics and they can have inconsistent levels of the hormone and any filler the mfg decided upon, and they don’t have to report what those fillers are. I asked her to put me on name brand and all of my stomach issues went away. And I mean all of them, even the IBS-C, since my I was getting the proper amount of thyroid hormone. Sorry for the long story, but that’s what it took to gain the trust of my PCP.
After the appt, I will be requesting a copy of my medical records, including all internal notes made by medical staff. After all this, I have a strong suspicion the NS red flagged my file. If he tarnished my reputation, I will go to Sutter corporate, medical board, get an attorney…whatever it takes to fight it, because what’s happened is unfair and unjust. In fact, I will be reporting my after care experience, because it’s not okay that doctors are putting their licenses before patient care.
Since the federal government stepped up the scheduling on narcotic pain meds last October, many patients are having similar experiences to mine. If we don’t stand up for ourselves and fight back, it will get worse. We, as a country, spend far too much on our medical care not to get the treatment we deserve. Doctors often treat us like their time, knowledge, opinions, etc are more important than ours. We are their customers and we pay their bills. It’s the only industry I know where the service provider acts holier than thou towards their customers. Well, we may not have doctorates, but we know our bodies better than anyone.
I will post on here again soon to follow-up on how the post-op appt went and what the go forward plan is. With the stress, pain not being under control, losing trust in my medical team to take care of me and listen to me when I need it most…I believe it has set me back in the healing process. The left side of my head is still in tremendous pain to where I have difficulty getting comfortable. I still have very limited mobility in my neck. And some of my symptoms seem to be returning. Weakness in my right hand and arm, whooshing in the left ear only has returned. Balance seems to be worsening again, as well as dizziness and feeling like I’m going to faint upon standing. I’m 3 weeks and 3 days post-op. Many of my pre-op symptoms disappeared, but as of the last few days seem to be returning. If this surgery doesn’t work, I will likely not undergo another surgery. This has honestly been a horrible experience and I’ll take my chances with the progression of symptoms. I’m not sure the surgery is worth the risk and set backs. I know, maybe this a bad attitude, but it’s how I feel right now. Maybe as time passes, it will change.
Amanda, thanks for checking in and I pray for a speedy recovery with no more complications for you. I have to say that I admire your positive attitude through this. It’s the best to have when a situation is what it is and being upset won’t do anything to change it. I admire you for that.
Hi Tomygirl, how are you doing now? My pre-op symptoms were worse on the right side. Post-op, most of my pain is the left side. Hurts to lightly touch my hair on the left side.
Okay, I don't want to seem as if I am dismissing the problem here, because I am not. But there are a few things you doctors DO know better than patients. One of them is the fact that the use of opiates following Craniotomy is generally a bad idea and most frequently leads to long term and severe pain that is very difficult to control. In some instances it takes a vaery long time to recover. That is why your doctor chose the maximum amount while waiting to reevaluate. Your well-meaning PCP should NEVER have given more.
The pain is not what you think it is. There simply is not that much to hurt with craniotomy. There will be pain along the incision line which are generally small. There are few pain receptors in dura, there is pain insensitivity of the brain, and in fact reduced pain fibre density along the incision lines. Your pain is a reaction to something else.
Following craniotomy (or head trauma) the body has a fascinating thing that happens which is the development of autoanalgesia. If left alone the body will develop its own analgesia. If interrupted with opiates, it does not. Opiates interrupt the natural healing process, and turn what should last days or a few week at most into something that can last for months. That is not to say the pain you are experiencing can not and should not be treated. Torodol has helped many as has Paracetamol, dextromethorphan, ketamine, gabapentin, and even dexmedetomidine infusions.
The most common reason for pain following decompression surgery is irritation of the Trigeminal Nerves (there are five) the greater and lesser auricular nerves (a branch of second- and third-cervical spinal nerves) and the greater and lesser occipital nerves. One should ask about scalp blocks that would whip these guys into shape. MOST NS will evaluate these things at the first Post op appointemet. as it take just about that long for things to settle down.
There are some other things to consider as well even a slight amount of Depressed respiration can give rise to hypercarbia which increases cerebral blood volume and consequently raise the intracranial pressures (ICP). If you think you hurt now, it pales to the headache a raised ICP causes. Moreover altered neurological status following neurosurgical procedures and the subjective nature of pain assessment hampers the appropriate quantification of pain. Keep in mind the the cause of your pain that lead to the decompression surgery in first place up to 40% of the time is NOT the result of the Chiari, and surgery only magnifies it. Analgesia as you know didn't work before the surgery (and rarely works on neuralgia anyway) It isn't gtoing to help much beyond zonking you after surgery.
I am disappointed you were not told all of this going in. You should have been.