Constant back pain, hip pain, groin and skin after Laminectomy and L4 L5 fusion
Posted , 14 users are following.
I am 4 months post OP of a laminectomy and L4 L5 fusion because of degenerative disc disease and a para faucet cyst leading to claudia equiane. I am in more pain now then before. My back is stable however I still have occasional pain down my left leg to my toes,sitting and walking. But the worst pain is in my back while sitting upright and walking. Plus the sore hips while sleeping so much so it wakes me up during the night and wearing tight pants hurs
As the day goes on back ach gets worse and worse with the occasional shooting pains coming from the out side of my hips to my groin ( I almost drop) and my skin across my back hips and thighs gets very sensitive to touch. This means I need to lay down.. i try to walk and stretch every day on the treadmill or outside but my back fights me all the way. I really have to push through. This means I need to lay down again and use heat or ice. I feel like I shouldn't have had the surgery except I had no choice. Does this mean this is my life forever? I am thinking I should as for an updated MRI? The surgeon said it is residual pain. I looked this up and it lead me to FBSS. He also said thanks to our medical service taking 2.5 years to originally see him and another 8 months after that for surgery.
I am going to see a physio therapist today. Any input would help.
0 likes, 33 replies
cathy82811
Posted
Jar420
Thank you for your input. Part of my frustration is the surgeon saying I should be able to move more by now and the PT telling me I am overdoing it.
I am doing my Physio as much as I can. At the moment if I do my physio I am not able to do anything else. By that I mean, dust the house and put the dishes in the dishwasher or take a drive in town to window shop.( I live 30 mins outside of town on a hobby farm) I can't sit upright to long.
The other day it was my grandsons birthday and we went to Hamilton On to celebrate with him (1.5 hours each way) my husband drove which means I can lay back but it was still way to much.
So, I have to pick my days to do physio and days to do errands. I can't do both. To much pain. I also can only do physio 1x a day because by the end of the day I am to sore to attempt a 2nd round of physio. That is on a quiet day. But i am plugging through.
I work as a cook for a Children's Mental Health agency. I work alone and I am responsible for 3 residences with 40 staff and kids, plus a school and a weekend day respite program. Off campus treatment. Also all caterings, I order, receive, set up and take down.
Camping trips ( a residence o 8-10kids plus 3 staff for 3-4 days of camping) and fund raiser BBQ's , school BBQ's.
I also offer salads in the summer and soup in the winter for staff lunch, 2x a week.
My job is less food prep and more logistics of all food. Ordering, receiving and restocking my pantry freezers and fridges as well as the 3 residence freezers, fridges and cupboards and school fridges and freezers, all.based on the weekly menus, I also prepare.
All cleaning of my kitchen, pantries, fridges freezes and staff lounge.
I have been doing this for 25 years. 23 years alone and was only given full time the last 6 years. Accomadated for my last 2.5 years until I went off while waiting for surgery.
I am having great difficulty seeing myself doing this job again. 😔😞. I loved this job.
This scares me.
What do the rest of you guys do and where you able to return to your job or do you do something else?
Cathy
Jarl420 cathy82811
Posted
tom41646 Jarl420
Posted
I agree! Your going to a physio is a good move. I didn't even know what it was. Thought the doc was making it up. The physio is going to have seen people all day with pain pain pain. They are going to want to do everything to get you back up and running, but it all is a very slow process. You must be very honest with them and don't hold back. Also, don't just talk to a resident. When I go to Beth Israel and the resident comes in they know I want to see the doctor as that is who you are going to talk with each time you go.
I did try cannabis. I did feel that it worked, but it is expensive and cash only. I started with higher doses of CBD oil (which does not make you high). I then added some with small amounts of THC. I finally got to the point where my pain meds and my cannabis were costing me $$ and I had to decide what I could afford. Then the doc changed some of my higher cost meds and the insurance paid for them so I stopped using the cannabis. Cannabis is non-habit forming. When you use it your body will reach a max - it will not want more and more. I was using the CBD oil from a bottle by drops and have a couple of vapes with CBD/THC - maybe one cartridge with CBD only. Luckily here in Massachusetts cannabis is legal to use - even for non-medical use. If you want more information please let me know. Have a lot of links to information. I am a firm believer that it does help and work.
pam99806 cathy82811
Posted
i was a nurse until i was hurt on the job and that ended it all for me ive dealt with a few years of severe depression when i was told i would never be able to return to my job in the same capacity...broke my heart and soul. Being a nurse was who i was.
tom41646 cathy82811
Posted
Hi cathy82811 and all others
This is my first time as I just came across this site. My gosh there are so many others like me.
Bit about my pain history:
25 years ago had fusion L4-L5-L6 (could swear I was told originally L2-L3-L4, but 5 years ago saw other in MRI - go figure)
6 years ago had laminectomy on L7-T1
4.5 years ago had fusion on L7-T1 (disc had herniated second time)
4.5 years ago had bunion surgery 1 month after fusion (dumbest decision I ever made in my life - had to use a walker because of fusion surgery no crutches and then couldn't take the med to bring down foot swelling because of fusion)
2.5 years ago had laminectomy on L4-L5 (was irritated with surgeon b/c didn't think he was going to do enough for problem - pain returned 1 month after surgery and surgeon actually called me personally to tell me he could no longer help - different surgeon/hospital than previous surgeries as we had moved to western Massachusetts and I tried to make health care work from there - otherwise was in Boston for 30+ years and probably built half the new buildings at Beth Israel - I'm not Jewish so they won't put my name on 1)
2 years ago had laminectomy on L4-L5 (back to surgeon at Beth Israel - love him and we have a wonderful relationship - I tell him he has to take remove something each time I see him (and not just my wallet))
1 year ago implant Nevro Spinal Cord Stimulator for L4-L5 pain (sciatic nerve not sitting in proper spot because of narrowing of the canal)
6 months ago implant Nevro Spinal Cord Stimulator in cervical for any pain it can find
So, here I sit and in more pain and more pills that make me want to scream. Haven't slept during the night for 3 months. I elected to do the SCS route after a long period of decision making/thought. My surgeon finally pushed me in that direction. Not a whole lot of information out there and the information we did find as far as how successful this new technology is is kind of hard to find on the internet. But, now here I am and we've been trying to get the cervical device set to my "sweet spot". I did the one week trial (required for all these types of implants). When I did the cervical in December I had I'm gonna say 85% pain reduction in my body. I was so overjoyed and was able to move around - like something you would see in a movie. Then I went outside and worked in chicken coop on day 4 of trial and my wires got messed up. Another bad decision I live with. So we continue to look for the sweet spot that was some where in that trial that took away my pain.
My pain goes from head to foot.
Headaches - come and go throughout the day and night - sometimes hurts a lot and sometimes hurts a little
Back of head hurts - different pain than headache (docs are stumped on cause of all head pain - 3 MRI's on head alone)
Neck pain - constant level 7 and 8 all the time and radiates up back of neck in to jaw, ears, side of face, out shoulders, down arms, in to wrists and fingers, down back in to shoulder blades - sometimes sharp, sometimes dull ache, many times feels like barbed wire wrapped around my neck and someone is tightening it - somewhere out there is a voodoo doll with my name on it
Lower back pain - constant level 7 and 8 all the time and goes in to hips, sciatic pain down left leg has got so bad in the past I've had to go to ER because I couldn't walk (working on a new wing for local hospital), pain now goes all the way down to my feet, my toes have been purple for year plus, my legs many times will burn and hurt.
I can sit in a recliner and just feel jolts of pain pop up here and there. Some pains are minor and some are major. I don't say anymore. I cannot have an MRI anymore because of the stimulators. I have a brother who is a social worker and he texts me everyday to ask how I am doing and every time he responds with "be kind to your body" and "this will all take time and don't push yourself too hard and don't be hard on yourself if you cannot do something". It does help as I feel he does understand for the most part. He's had fusion at C4-C5 and he has herniated disc at L4-L5.
I have on my pain management:
Neurosurgeon at Beth Israel in Boston. He's second in command of neurosurgery department.
Physiotherapist/Pain Doctor at Beth Israel Pain Center. He's wonderful, but relationship was very rocky at start.
Nevro representative. Another love hate relationship. Looking for the sweet spot is like looking for a needle in a dozen haystacks so my patience is very low. They are patient with me and we keep testing spots. It is taking longer than the normal person, but I do have 2 devices and this is not the norm. It is expected that the cervical device will probably take away pain throughout my body and I won't need the lumbar one anymore - we'll see.
Primary care doc back in Boston. Have been seeing him for 18 years now. Helps to have someone who knows you in and out.
Therapist here in the Berkshires of Massachusetts. I was seeing a Pain Psychologist for a while at Beth Israel. I was crying so much he told me to see a therapist. I thought he would help with the crying. He taught me pain meditation. I can do it, but don't feel like it is doing anything for pain.
Physical Therapist. Just recently started going again. Have been to more PT than you can imagine. One in Boston asked me if he could tape my shoulders back. I said yes and went around with my shoulders taped back as far as they could go for 3 days. PT would help some, but only until I got to the exit. The one I have currently does dry needling - which I never heard of. I actually think it is working! Yoohoo! Very slow process though.
Partner of 35 years who brings me breakfast in bed because I'm in so much pain when I wake up I don't want to face the day. He's so patient and I get very upset with myself for not being able to help more.
I was working remotely to firm in Boston and then went out on short term disability in January for surgery. Have not returned. Long term disability was denied, now we are in the appeal process. So no income for me now.
My meds are Gabapentin (2400mg daily), Oxycodone (60mg daily), Cymbalta (120mg daily), Tizanidine (10mg daily).
I'm not sure what is working and what is not. My mood swings are worse than a pregnant woman (I think). I cry at the drop of a hat. I wake up all night from pain. Some of the settings I try on the devices actually cause pain. At times, the pain would be so bad that my skin would get extremely sensitive and wouldn't be able to stand in a shower of water. I've had to start buying pants 2 sizes too big because anything slightly tight are too painful. Imagine how I feel wearing 38 waist when it really is 34. Now my mind has been made up that I will eat my way to a waist 38 - not good.
I've had to give up the idea of working. I have driven a car in over a year. I knit and crochet. I pull garbage out of the can because I think I can upcycle (blame this on YouTube). I do anything I can to keep my mind going and off my carcass even though pain is always present.
I think 4 months is too soon for another MRI. I wanted one on my neck and the surgeon kept saying too soon. I would hound them at 6 months. Have your docs considered an anti-depressant? I've been on one since my neck surgeries. I was on oxycodone back then and wanted off so we replaced with the cymbalta. Was quite a difference. One side effect of cymbalta is muscle-skeletal pain relief. I have friends who have neuropathy and they use cymbalta for pain.
Unfortunately I think you are going to have to get to the 6 month timeframe before the docs will do anything else. If PT is all you can do once a week, then accept it. I'm trying to do the few exercises I've been given. If you are doing yours then you are one up on a lot of us. You have to do what you can and only do what you can. Have you tried acupuncture? I have - didn't work for me. Are you able to do leg stretches? Lay on the bed and pull one leg up at a time? The sciatic pain might prevent you from doing it or it might feel good to stretch the muscles and the nerves. For a while I had to get used to sleeping sitting up against the headboard. I didn't like it, but I was able to get some degree of sleep. Sitting used to feel good. Get in to positions that feel good. Try to go up and down from sitting position. Walk when you can and as far - even if to the TV to change the channel. I've recently found our town library. Love going there, especially since they have high speed internet. I live in a town with limited communication facilities - no cell tower, no DSL for many (dial up can you imagine). I visit the library a few times a week. I take out books and videos. I try to keep my mind moving forward with thoughts and ideas. I might get frustrated when I can't put the ideas in to motion, but at least I keep having them. Someday one idea will make me enough $$ to build a pain device which will take all pain away instantly - no matter how much and where. Right? People who do not live with pain have no idea what it is like 24/7. You have to keep going.
I'm glad I found this site. It is such a help to see what others are doing and we are all in the same boat. I know you don't want to try meds, but something like a cymbalta and the Tizanidine are not narcotics. You'll need to figure out for yourself how much pain you can stand without the help of pills. Sounds like you are in the beginning of trying different meds. The physio person will go over options with you. Mine is my lead person now in my pain management team and regiment. My primary care doc prescribes all my meds and periodically checks in with the pain doc. You need to encourage your doctors to talk about your care. Hard to do, but they will do it. As much as we hear about people and problems with drugs, those of us who have chronic pain have a very different type of medical pain management. We need to trust our docs and work with them so they might put us on something and then take us off as quickly as possible. I will start coming off (or greatly reducing) the oxycodone in another 3 weeks. I'm not looking forward to it, but really isn't doing anything right now and the doctors feel it is time. This is the physio doc who is calling the shots after talking with me and my partner.
I know this is long email - problem with all the meds. I hope you find a solution/management mixture which will bring you relief. Looking forward to your next post.
allaroundanne tom41646
Posted
Hey Tom, you don't have a pain management doctor, not a true board certified pain management doctor-that's what I am, retired now and I can tell from your list of doctors that you are missing an essential doctor. You have a surgeon, a general/internist, physical therapist, psych and you keep referring to each of them at different points as your pain management guys, but they aren't pain doctors. It is a specialty field that requires up to an extra two years of training in just pain management after residency. Most pain management specialists are anesthesiologists, others are rehabilitation medicine. I highly doubt your neurosurgeon went back for another couple of years in pain management training after his 9-10 years to get his neurosurgical certification. LOL that 9-10 years tends to make those surgeons think they know everything about anything, especially if they are at a Harvard hospital like Beth Israel. But they don't know pain management as much as they think. I think it would be worthwhile to find one.
I too have a Nevro in my neck that is doing diddly doo. The problem with Nevro is they really can't program. They only have those three unite P1, P2 and they have P3 but never use it. Going up and down on Nevro really doesn't do much for you except cause muscle spasm, therefore they recommend you not do it. There really is only two sweet spots, P1 at level 2 and P2 at level 2. I also have an Abbott in my lower back and they have all sorts of level, they have tingle mode in which you can feel where they are stimulating. They can move around where the stimulation is going. Poor Nevro can't do this so you never really know if it is working.I turned mine off and still had neck pain. I turned it back on a month later and got severe muscle cramps so I do now know it is connected. As you can probably tell I sure do wish I had put the Abbott in my neck too. Right now my doctor is considering leaving my leads in and connecting them to an Abbott if my pain pump doesn't cover my neck. Anyway, you are not alone in having a useless neck Nevro.
tom41646 cathy82811
Posted
cathy82811
Posted
Thank you Tom41646
I have seriously thought of CBD. I believe it works to. I was using an essential oil Compaiba which is directive and is also CBD. But like you said it was very expensive. Marijuana I'd going to legal next month but will not be covered by benefits. And I don't even know where to go to get it.
I believe my PT guy is doing a good job. Maybe trying to rush me a bit. I am totally honest with him and he listens. I am hoping he can be an advocate for me as well.
Thank you. Cathy
cathy82811
Posted
Thank you Tom41646
I have seriously thought of CBD. I believe it works to. I was using an essential oil Compaiba which is directive and is also CBD. But like you said it was very expensive. Marijuana Is going to be legal next month but it will not be covered by benefits. And I don't even know where to go to get it.
I believe my PT guy is doing a good job. Maybe trying to rush me a bit. I am totally honest with him and he listens. I am hoping he can be an advocate for me as well.
I am doing stretches and my PT most days.
I use T3 and muscle relaxers for break through muscle pain. But my family Dr is really struck about opioids. (because of all of the stuff on the news)
The most comfortable chair is the lazy boy, laying way back. I also have a pillow behind my back.
Kitchen chairs and the car hurt my back after 30 mins. Even with a lumbar pillow. Usually at this point I would get up and walk. Standing still is very difficult. I need to walk or sit or lay down. I just rotate these 3 positions. But If I am not able to change position, for whatever reason, then I will get more sore by the minute. Unmanageable pain.
I will be at 5 month mark on the 21st. I get so tired of people asking me how I am doing and only having negative replies. I appreciate that they care, but I feel bad that I am not feeling better and that I don't have more positive news. Even when the surgeon asked. I know that is crazy. My husband is a great supporter. Even though he has his own things to deal with.
Thank you. Cathy
Jarl420 cathy82811
Posted
I always tell people I’m fine too even if I’m not just cuz I’m tired of the response I would get. It’s not like they’d be able to do anything for me or understand what I’m going through. My wife is supportive too but If you haven’t lived through it there’s no way to be truly sympathetic. Sometimes I wish she could switch bodies with me for just a minute to see what it’s like.
I’m in Chicago and marijuana is legal only for medicinal use while I could get it I’m with you it’s very expensive. I can get 90 Norco for a couple bucks. It’s really crazy.
CBD oil you can actually get anywhere because it’s not the version that gets you “high”. I think I even saw it on amazon. The whole insurance thing not covering it is really terrible.
They had cbd gummies at the quick mart here. My physician is against opioids too and it’s annoying. Maybe just go to the clinic and tell them you slipped and aggravated your back and can’t get to your doctor but need Norco 10s. They’d probably give them to you no problem. Anyway I’m all over the place sorry. To find where they sell marijuana near you just go to google and search “dispensaries near me” I’m sure there’s one closer to you than you think.
allaroundanne Jarl420
Posted
We have legalized medical marijuana in FL too, the problem is my PM doc doesn't do it, so if it shows up in my urine I lose a great pain doc. I don't even want to risk the CBD oil in case that shows up, it is just not worth it in this crazy climate, I have a doctor who is willing to write narcotics for me, never a problem, I have honestly always been able to count on him even for outside surgery, dental stuff to give me an appropriate prescription of narcotics. He is literally irreplaceable. I have even considered moving to another state, they publish monthly lists of who writes how much of each narcotic. Usually at the top of that list is some dirt bag doctor who lost his license and just got it back, he's getting patients by writing scripts for narcotics LOL not exactly a great doctor. The climate here during this hysterical opioid crisis made up of the misuse of statistical data which is then fed to the media to cause a frenzy so the government can step in between the patient and doctor relationship. It is terrible.
tom41646 allaroundanne
Posted
Allaroundanne - good post with device information. I do have a pain doc - not my neurosurgeon. The pain doc is an anesthesiologist by education. The neurosurgeon sent me to him because my pain was everywhere and he didn't know what to do with me. I know what you mean about the trials of the Nevro device. Problem with all this is the availability of information to make an educated decision. But, like most of us, education decision flies out the window when we are in pain and want help. At that point we have to go by trust. As you were a doctor you would know you have to have a patient's trust or the relationship just won't work. I have to believe that at some point my Nevro device is going to work. We are closing in on a "window" of where the device is working ever so slightly better. What I have a hard time telling my primary doc is the discomfort the device makes. Then there is the fact that because of multiple surgeries on my spinal column, I think my nerves are not acting appropriately. They've been cut and remade themselves so many times that they are shooting incorrect information to my head. Right? Wrong? Who cares when it is a day like today and my pain level from head to foot is 10 and I'm telling my partner I'm never leaving the bed again. So overwhelming. Tomorrow morning I'm supposed to be at a meeting at town hall to help establish an ADA commission. My disability is chronic pain. I hope the pain is better otherwise I won't be able to attend the meeting because of my disability. Isn't that a laugh! Just have to do our best to keep going. I wish the government would make up their mind about CBD oil. Legal or not legal. Then I read it is illegal with feds, but if they know someone is using it and is finding it is helping, they will leave you alone. If they are doing that then they should just change the darn law. Crazy and confusing! Then the law makers keep coming back to make more laws regarding the use of narcotics. Even just to read those stories makes me unhappy and more miserable. I'm all over the place today - sorry as not a good day.
allaroundanne cathy82811
Posted
Gosh Cathy, that's an awfully physical job you had, all that prep and clean up stuff. I think you could easily return to the ordering and organizing part of the job. However, you would have to be careful and take breaks from sitting too long as believe it or not, that too is a problem. I honestly don't see you back at this job again in it's entirety, sorry. I was an anesthesiologist and a pain management doctor. I wasn't able to manage the on your feet all the time and when you do sit down it was never a chair meant for your back LOL. You could never take a break and say, I just have to go lay down now, so I had to retire at age 40 entirely, I went part time doing just pain several years before.
I hear you about picking which days to do PT, LOL that sounds just like me. Perhaps it is because we come from the no pain no gain generation, but I swore each time I went I was going to go slow and take it easy, but I always did too much and ended up in bed all afternoon. It isn't the fault of PT, they aren't in my body, they don't know what I am capable of, only I know that. I did that to myself each session.
I am also the same way about scheduling events. My boyfriend gets mad, but I have to watch out for me. I know how tired I will get, if I need to add in an extra overnight stay before we head home on a long drive, that sort of thing. Don't let anyone make yourself feel guilty that you aren't well, or that you look out for yourself. I have learned that the hard way. No one else will give a damn about you, they have no idea that this hard wooden straight back restaurant chair is going to mean misery to you for the next couple of hours. You need to speak up and ask for a booth or some other more comfortable chair for yourself.
cathy82811 allaroundanne
Posted
Anne.
I feel you are correct. I truly can't see me going back to that job. At least not at this point.
Everything you wrote rings true for me as well.
How long ago was your procedure?
Do you live in Ontario? Just wondering how everything will play out.
Thank you for your reply. It is great to hear it isn't just me out here going through this.
Cathy
allaroundanne cathy82811
Posted
I am American, Cathy, I live in Florida. Which procedure are you referring to, I have had a bunch, but no surgeries. I was an anesthesiologist in addition to a PM. I won't let a surgeon near me unless I need it urgently. I have had two SCS placed and on Monday I had a trial done for an intrathecal pump. Before these I had all sorts of blocks and was on medications to control pain along with physical therapy. It has been a long 12 years when my arthritis that is related to my hemochromatosis first reared it's ugly head.