Chronic Buttock Pain

Thank you Bebold
Appreciate your insight and sorry to hear your miseries.
This is a neurosurgeon recommended by my Gastro Dr , who is the best Dr I have ever met, he cares and is smart.
I know you’re right no matter what surgery y you have in your back, you are risking things.
I know that I will have ongoing back issues because other parts of my back bother me. My expectation is that the numbness in my right leg and all the way down to my foot will go away, and the claudication in my butt will go away if I am fortunate enough to have that as a result I feel like i can continue my exercise routine and keep some level of fitness and health.
At this time I feel that I have no choice but to do something about the extreme stenosis in L34 and five. If I choose to do nothing all kinds of nasty things can develop like loss of bowel, control, and loss of right foot becoming drop foot right. If I continue as I have been, I will be unable to walk any distances to take care of the peripheral artery disease from my clogged arteries in my lower legs.
It’s critical that I keep moving for any quality of life in the future.
Thanks, Tony

I am sorry you are suffering both physically and mentally.
I believe you stuck but really don’t need to be.
Having been on the merry go round your on I know how upsetting this can be.
Ok solutions : stay away from Cymbalta worst ever drug you’ll be addicted. Gabapentine is ok but use it only as needed like bed time.
Your neck can’t be operated on so if otc and massage don’t work try biofreeze.
Ok the butt pain, stop wasting your time with pt. You have real issues, just like me. Go to pain management for 2 reasons; through injection they can isolate the issue, secondly this provides a roadmap and a necessary step for surgery if needed.
Ok so you hate needles , not more than me. I was traumatized at 5 yrs old held down by 3 orderlies for penicillin shots 3 times a day for 7 days in the hospital. I screamed and cried every time.
I finally realized 60 years later so many things hurt more than a shot and I don’t think about them. I’m here to tell you I had 22 shots and 6 bilateral epedurals this last 6 months and I’m here to tell you yes I was nervous but it really didn’t hurt.
. I am now awaiting minimally invasive surgery. The other reason you need shots is it may actually fix the back. Hard to believe but my wife had 5 unsuccessful cortisone injections for chronic back pain , she was miserable. The 6 th epidural nailed the problem that was 11 years ago and today she did Zumba and was pain free from that day forward. I wasn’t as lucky but they definitely helped.
78 with extreme stenosis in L345 , I have to decompress and relieve the pinched spinal cord.
Go and get the injections it will be you
Only way forward. You did enough PT. I was afraid also, trust me this is good advice from a sissy of a guy.
Tony

You are absolutely right. It does come down to quality which is directly related to function. A numb leg in your case, a drop foot in mine.

But what I'm curious about is your claudication thing. I fell flat in my butt 11 weeks ago. I have continued muscle pain/spasm that is niw interfering with my ability to even swing my leg forward to walk.

Can't get a dx because my back looks so bad on x-ray, its assumed to be my back.

I'm a long disabled nurse from it but I need to read mire about claudication. Thanks for that word.

Modtly I'm glad you havr a neuro or orthopod involved. That's just my thing. I think, really, strictly MY opinion of things I've seen pain drs do to even kids, I think they overstep. A 13 year old should not have a spinal cord stim put in as first treatment. An 8 year old woth a broken arm shouldn't be sent to a pain doctor. These are things I see happening on sites for "chronic pain." It just makes me mad. And with yhe.war against chronic pain patients on full force, everyone is sent to a pain dr and I see them doing their own experimental stuff.

Total admission I am completely prejudiced against pain doctors. I kniw.some people are helped but I don't think people should go PCP to pain doc amd I'm seeing it. They should never replace neurosurgeons and orthopods. Yup I'm a nurse. I worked ortho when I slipped disks lifting a pt. I had neuros and orthos do my surgery and still ended up in a mess but I don't blame the doctors. Fair or not I.might have not been so forgiving of a pain dr doing a fusion that medicare won't even pay for. Full transparency.

Hey Tony second response as I just saw yours to me.

I don't hate needles. I've done all that years ago. I was recently referred to.anpain person who had pages.and pages of contracts for me to sign about drugs and I don't even take opioids. No beer. (I have a pony beer about once a month and not being only any.lain meds, at 69, nobody is going to threaten me if i have 6 oz of beer.

2 docs wanted to inject two different places recently without a clue what was wrong. And I have CRPS from the groin down. Even a blood draw can make it spread. I have.it in my colon and ribcage and larynx too after covid. So for me there are other things to consider.

Some of the five pages of contracts were written in all caps bold and direct threats. If you for any reason broke any of the contracts you had to sign that it was okay that they would notify every doctor in town that you were fired from a chronic pain clinic without telling them why which makes everybody think that you are drug seeking.

And then I was very traumatized by a pain doctor about 10 years ago. When I went in it was an hour and a half of filling out no word of a lie 50 pages of my medical history and again contracts. I was ushered into this little tiny room and the doctor comes in carrying needles. I had not even met him. I had already had four back surgeries. I was gassed that he walked in assuming he was going to inject my back never having even examined me. One of the contracts was that I had to allow a friend to come in day or night and count my pills. I wasn't on pills.

I told this doctor that I would not accept any injections right now. He had already asked the nurse to leave the room. He wanted to inject me then and there no ultrasound no anything to see if he was going in the right place. And when I tried to leave the room he got between me and the door and wouldn't let me leave.

I have a pretty serious trauma history. I've been in bad situations with MD's in the past. And the one my PCP recently referred me to was supposed to be the best one in town. I tried to cancel my appointment with them and they wouldn't answer the phone and in fact my doctor's office tried to cancel my appointment with them and they wouldn't answer the phone for them either. They had miserable reviews online. And one of them was that you could never cancel an appointment because they would never answer the phone. And if you didn't show up they would fire you and tell every doctor in town that you were fired from a pain clinic and that you are pain meds seeking and to not accept you as a patient.

I take lamictal for epilepsy, bipolar and CRPS. Same category as neurontin/gaba. I actually went on gabapentin last year and my lipids went through the roof.

So again, full transparency. The last try was 2 weeks ago. Finally my doctor ended up pulling my referral and told me that they would intervene if they tried to say I was no show. I love my PCP and her office. She even has a chronic care nurse who answers the phone or.calls back.in hours and will spend an hour talking if you need. Very very fortunate.

Last Friday they said that they would order whatever CAT scan ultrasound MRIs or whatever is needed to find out what's wrong with my hip. Because I've had the MRI and x-rays but I did it to my back not to my hip.

By the way I recently read that an Open MRI doesn't give as good a reading as it closed MRI because the waves are not as scattered. Made sense.

Anyway yes I am very very Prejudiced and I totally admit it, and Beyond me I've seen them order very questionable things for friends and for people I've met online. The one I went to 10 years ago I wasn't taking medication but they were about to make me an addict. I think fortunately for me I'm allergic to all opioids.

Thanks for the conversation good luck! Please keep all of us here in the loop. Betty

Wow thanks Betty
Man you have been through it!
You are a trained medical professional.
I will pray for your good fortune moving forward and a miracle cure for your complicated medical maledies.
Tony

Thanks Tony. Ditto!
Comparison is the thief of joy.

We all here have been thru it right? The ones who do well don't come here. So when I go to a site about CRPS, I know I'm hearing the worse case senarios and then I see a parent of a 13 yo thinking we are average. I'm always there to tell the parents there is hope. There is treatment when first diagnosed. Its true, a dr put a SCS in a teen like 3 months into her dx. There's no place to go from there.

I do take LDN (low dose naltrexone - very different than the 50mg people take coming off drugs - if you've never heard of it. Its an antiinflammatory but you can't take it with any opioids do clearly not near surgery. Its also a very long treatment. Life for me and many. There is quite a bit about it here if you need more info.

I am looking at the 3 week Mayo Pain rehab mostly because they don't do test to diagnose or try to treat.

I just need to be able to cope better - until my hip of course which I do want diagnosed. If its my back, ill learn to live with it. One doc says fusion but at almost 70, living alone, medicare doesn't really pay for much except a bath. And a fusion can fix the instability but already so much scar tissue I don't know it would do that much and it would have to be from L2-S1. Too much. I ned to improve my coping again. I hear tho that some go to the Mayo PRC in a chair and walk out 3 weeks later. A lot of work but I'm game!

I recently bought a wheelchair and trying (don't want to!) adjust. My age is catching up and some of us have an early start huh? When is your surgery? Are you alone, married, kids nearby?
Till later, betty

@bebold
I am 54, a single parent of an 14 year old son and his sole provider, no child support and lost my job last summer. I also live alone with my son and have no family. I have cervical and lumbar stenosis (severe congenital) and had ACDF surgery and holding off as long as possible for lumbar surgery by getting steroid injections. Still in lots of pain despite multiple injections and only taking 100 mg Gabapentin at night, 150 mg bupropion for depression and 100 mcg levothyroxine for Hashimoto’s hypothyroidism. I also have severe pain in hips/buttocks/hip flexors and awaiting my MRI results (had MRI of hips/pelvis last week and this is the first for me; I have had lots of spine and brain MRIs). My pain makes it hard to walk, lift legs, bear weight, sit, etc. my thought is I may have sacroilitis and something wrong with my hamstring connection to my right ischial tuberosity (sit bone). I have had a CT scan show inflammation of the sit bone in 2019 but doctors ignored many of my CT/MRI results (including my flattened spinal cord in my cervical spine causing many problems below C5C6). Similar to you, I have a trauma childhood and have had bad experiences with many doctors and the healthcare system. I worked in healthcare/insurance but was not a provider/healthcare worker but behind the scenes in management and I did not like what I saw/heard. Healthcare as a for profit business is terrible for patients.

About 14 years of pain ago, my internal medicine Doc said “you have multilevel arthritis of the spine that is causing all your pain. I can prescribe you pain medicine or refer you to pain management but nothing else can really be done.” I should have listened to him and just taken the meds. But of course, like so many of you I wanted more specific info, thinking my sitting pain was coming from a specific impingement source that could be fixed. Thus years of tests, MRI’s, PT, various meds, the best being NSAIDS until my kidneys said “no more”, cortisone injections, PRP injections, EMG diagnosis of pudendal nerve entrapment, therapy sessions and using antidepressants at times,
acupuncture , massage, and placement of a Spinal Cord Stimulator. In the end, I would say my initial doctor was right except for the addition of the SCS which came available later. And certainly the SCS is not a miracle to end all this pain. But a combination of Cymbalta, Lyrica and the SCS each contribute about a third of the work of keeping me out of bed full time. I take my seat cushion everywhere. The problem is mechanical. Pressure on nerves starting higher up in the spine are impinged by my arthritis and sitting directly on already impinged nerves causes vastly more pain. But the combination of the 2 meds plus SCS makes the pain just tolerable enough to be thankful to wake up to each new day with hope. Good luck to you all. It's good to be alive!

Man, where did all this stuff happen? It sounds like something that would go on inside a Russian gulag. Run, as fast as possible, from that joint!

Hi @dlydailyhope
I'm sorry for your predicament too. I'm guessing you have applied or got ssi/ssdi? It can take a while but you have a growing boy who I bet can eat you out of house and home! Definitely hard to raise and keep up I'm guessing a "taxi service" to get him to-ing and fro-ing. All this average stuff when you have a teen but there is no average when in constant pain. I'm guessing tho your limits might be already beyond expectations at this point.

Although it would be good to have someone to talk to, young teens, in general, might be very different with your son since he grew up with more reasons to flex his empathy muscle than most.

I've had steroid injections in my hips, knee, wrist, all for bursitis but my pain is really in the fatty, fleshy part of my butt, posterior closer to the iliac crest. An Ortho surgeon I saw, didn't even examine me. Would even look at where I said the pain was insyead said it was "probably" an SI "strain" and wanted to inject me there. Insert a SCS without a definite dx.

I have read that numbing med can be injected into my gluteus muscle and if the pain stops, that's it! Id probably be up for that as diagnostic? Decades ago I did all the nerve blocks etc to avoid subsequent surgery but to no avail.

I'm glad you are getting some relief while waiting for a good time to do it, but like with Tony, there are some symptoms that can get worse and more permanent nerve damage by waiting. Rock and a hard place. Unless they can see a torn muscle that needs to be stitched or something to be able to walk, I'm avoiding any surgery and well tho I definitely had tons of back pain (I've been in and out of PT, mostly in, for 2 years. I see a chronic illness psychologist who is also trauma informed. I'm really thankful to also make myself afford good insurance, medicare supplement, when I turned 65.
I also have Hashimotos. I'm curious about 100 of gaba at hs which is not even close to anything therapeutic. It did make me pretty sleepy and I never got up to a therapeutic dose and I tried to switch from lamictal as I started getting hypomanic with the switch.
Its known that folks with traumas histories frequently have chronic pain from physical trauma plus our cortisone and adrenaline levels have never been normal. I have central sensitization so I know my body already feels all pain in esp my trunk as higher up in thd pain scale than others tho some hear that at even Mayo pain rehab I've read, as "not real, all in your head." Which is furthest from the truth. My pain receptors are kicked up a notch but like most or all of us here, we have a high pain tolerance.

An interesting mix of I feel it harder and I tolerate more which could cancel each other out.

You are in a tough spot to be responsible for a younger one as opposed to just my cat - who is feeling less loved but also seems to know when to sleep touching me...she has never done that before!

Well I've list my was so aboit that I woke today to an eye infection under my lid so I'm trying to get an eye dr appt for today. File under "always something."

What makes you think its SI niw. Is that where they are injecting. Have you been able to get -or do you feel you don't need - a 2nd opinion.

I just realized last nighf I first saw a dr two weeks after my fall but it was late March! 3 months, no diagnosis, no dr. Yep, as Tony said, absurd. I may go dump myself back into the original ortho's lap as it was a hip guy in his practice who refused to even see me. See what he says next. Either way, nobody injects me without fluoroscopy so they know where they are going. Someone who does many a day without it being a pain person, but like you, walking gets harder every day. Wishing that the injections continue to help. I have a friend with a paraformis issue who gets botox injections 4 times a year with success. Lidocaine injections can help narrow down the origin of the pain.

Where ars they injecting you? What do they say is the issue? Your back? Like me tho the pain might be different than normal back pain.
For profit medical treatment means less treatment and less staff and supplies (or local hospital had no PCP during the pandemic. Barely even masks unless they provided their own, as regardless, the stock holders needs and 2nd and 3rd homes and huge bonuses at the end if the year for the hospital CEOs for keeping costs down, profits up. Well see what happens here when they can't accept medicare/medicaid anymore. (Tho many published articles and lawsuits, lots of illegal cahoots with government local and state, probably Federal as HCA is a huge entity buying up hospitals and private practices. I just found out my vet was bought out by a corporation. Staff and hours hugely cut! People leaving. Never works in our, our pets, our families best interest. Sorry to go off the rales, I may edit later. 😁👍🏼