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Finally posting

SooveritSooverit Finger Lakes region of NYPosts: 459
edited 01/04/2016 - 9:06 AM in New Member Introductions
Hi All,

I'm Sara. I've been lingering for a while, and now finally posting out of frustration and sadness.

I used to be a very fit, active, and outdoorsy person. I was hiking, kayaking, backpacking, doing advanced yoga for years, biking, etc. Over the past year, I've gotten to the point I don't do any of those things and hardly feel motivated to leave the house. Worst of it is I have a two year old that I can't be the mom I want to be to. I have pain that keeps progressing with no answers :(

I started to get deep hip pain in 2011, which I assumed was referred from a chronic left knee problem. I moved around/traveled a lot in that period, so as soon as I would get anywhere with a doctor, I'd be moving again. In 2012, the knee/hip pain became more consistent and intense. I saw an ortho who ordered another left knee MRI and a hip x-ray.

X-ray was fine. Mri revealed some knee issues, so arthroscopy was scheduled. Found out I was pregnant day of surgery, so cancelled. Hip/pelvic pain got much worse in late pregnancy. Epidural wouldn't numb it, though my legs were totally numb.

Couple months after baby, I returned to reschedule knee surgery. Told ortho about hip/pelvic pain. He came back in and said, "it's not your knee, it's your hip!" Ordered hip mri. I was floored. Thought he was a maniac. Got a 2nd opinion. Same. Ordered hip mri. House sold quickly, so figured I'd just resume my TX in new town. Had norco to manage pain for interim.
Sometimes the hip/pelvic pain was horrible. Felt deep pain throughout, tender points on hip and pelvis, and searing pain in hip and down front of thigh.

Last winter, felt an awful pain in left low back while getting out of the car. Figured it was a strain. Went on for a couple months. Finally saw new ortho. He wouldn't do hip mri. Thought low back pain causing everything. Did lumbar mri. Showed stenosis in L4/L5. Dx sciatica. Sent me for PT, gave me lyrica and norco. 6 months later, no improvement. Doctor not available, sent in sub. Sub said the stenosis wasn't significant enough to cause my pain. Ordered hip mri and sent me to neurosurgeon.

I just knew something would come up on mri. I was so relieved I would finally have an answer (the low back, pelvic, and hip pain are constant now, and I'm always tired).

Nothing on the mri but cysts around my ovaries on both sides, but "without concern." This doctor even said my lumbar spinAL stenosis wasn't even there, that it was a mistake by radiologist! :(

Sent me out with a recommendation to follow up with a gyno and my gp.

I also have a swollen lymph node that has been there for 6 months, but no one wants to investigate.

I'm devastated by this. I know the pain is very real. It has changed my life. I don't know what to do anymore. I have my pain meds thank god, and I don't know what I would do without them. Now I worry they will disco them since the diagnostics have been negative.

At a loss :(

Thanks for reading. Sorry so long.


  • SavageSavage United StatesPosts: 5,427
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  • israaiisraa Posts: 18
    edited 01/05/2016 - 10:34 PM
    I advice you to see other doc don't wait the long you wait the worst it will get hope I can help you more try ice bag and hot water bath for the moment
  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Update: was referred to pain management. PM suspected SI joint disease. Immediately did SI injection. Pain eased for a week (though, of course, my other pain...back, hip, pelvic...was still there and in sharper focus).
    She didn't want to take over med management because she was confident the injection would lead to no need for further meds. 

    Had to refill with my pcp because I had a contract with him, and the pm hadn't taken over meds. He was very irritated, but refilled a 15 day prescription and reduced me by three tablets per day.

    Went back to pm, explained med issue. Another SI injection and she refilled my prescription early, increasing me to five per day  (from the six I had been on) which meant an early pick up. This injection did not work at all. 

    I went for a second opinion of my imaging at the University medical center in the "big city."
    The doctor there immediately found a 10mm annular tear with other degenerative changes at L5, and supported the SI joint disease dx. He assumes it ruptured, which caused the progressive pain and sciatica, and exacerbated the SI problems.
    That was, at least, very validating (I'm not a hypochondriac or "just depressed.").

    Went back to PM. Did an epidural right away (I had no idea it would hurt so much, and cause pain in places I hadn't had it before!). On day two after epidural. Hopefully I'm just sore. Did majorly reduce left SI joint pain. Changed meds to nucynta ER and nucynta IR 3x per day  (from five 5/325 Norco daily). Added effexor for anxiety, though I'm waiting to hear back from pharmacist about safety of taking the nucynta with another SSRI.

    Don't care for nucynta. Feel weird and pain still high. Miss norco because it was effective, reliably quick, and zero side effects. I dont see how this dose will be adequate once flare hits later this month. will give it a reasonable try before I see pm again.

    Sigh. At least I have some validation and some pain relief, but no options to "fix" it once and for all. 

    Thanks for listening :smile:" alt=":smile:" height="20" /> 
  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Just for giggles...

    I told my pm "I just need to be able to take care of my child." She responded with a condescending lecture about how "we all have life stressors. Work, marriage..." I wanted to laugh and say, "yes, true. But do WE ALL have to cope with those stressors while dealing with unrelenting pain? And what is the point of such an insensitive and minimizing comment, anyway?"

    Don't know why they feel the need to throw in stupid, useless comments like that.

    I was explaining to the doctor at the University that when I'm in bad pain, I get irritable, impatient, withdrawn, and anxious with my toddler (which breaks my heart), and he joked, "I remember always feeling that way when my two were young, Har har!" :neutral:" alt=":neutral:" height="20" /> 
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    Interesting.  I've had back pain and back issues for 40 years.  I've also had knee issues and my hip/pelvic area always has an unrelenting pain.  The pain meds handle everything except those times when it's between med times- I oversleep or something.  My hips feel so incredibly painful but I've never had x-rays or any treatment for my hips.

    Until I joined this site I didn't know about SI issues.  I remember my grandparents talking about sacroiliac blah blah but they also had "hardening of the arteries" and "inner pain".  I assumed these were things that medicine now had newer names for.  Having had several epi injections my pain doc looked at the sacroiliac area while the fluoroscopy machine was already on.  He mentioned that the area was full of arthritic changes and looked worse than a 90 year old's.  So this probably accounts for my ongoing knee and hip issues.  There isn't any treatment that is successful for arthritis and I get angry that doctors don't tell people this.  I'm still getting it through my head that there is nothing that really helps arthritis except "replacement parts". 

    What helps me pain, aside from the medications I find helpful, is knowing I'm not nuts!  It's reading the posts from other members and seeing them describe exactly what I'm going through.  Hey!  That's exactly what I'm feeling!  Personally I believe that IRL support groups for people with chronic intractable pain would be helpful provided there is a good leader.  It's also possible that the support group could become a depression group because it's really, really difficult knowing that this pain is going to continue every day!

    There are definitely a few surgeries I wish I had been able to cancel- one definitely did me more harm than good and was the reason for 2 more complicated surgeries to my knee. 

    Sheila aka PlumbTuckeredOut

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • itsautonomicitsautonomic LouisianaPosts: 1,802
    That is a pretty good sized tear if I read right.  Did the ESI target the tear?
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • SooveritSooverit Finger Lakes region of NYPosts: 459

    That is a pretty good sized tear if I read right.  Did the ESI target the tear?

    It is a good sized tear....or was a year ago. I don't know, honestly. My pm doctor happened to have worked in the past with the university doctor (go figure, lol!), and my impression was that it wasn't a good relationship. PM doctor basically pooh-poohed his recommendation for a bilateral S1 transforaminal epidural. Said it "makes no sense." So, she did some other epidural. Hurt so bad when it passed through my left buttock! Left me in worse pain.

    Now I have a new appt with her (at her request) to do the one he recommended. Sigh. I've had three injections in the past month and a half. Becoming a bit wary of them.

  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Update: epidural was effective, but only lasted a week and a half. Couldn't stand the nucynta. Woke up one morning with head buzzing and thoughts racing. Sent it with my husband back to the pain clinic  (he's a social worker on the next unit over). They made him stay for a pill count (no worries there) and to flush it down the toilet (50 bucks!!!). I figured my doctor would have a back up med in mind to replace it. Nope. She requested I come back in for two weeks for more injections  (already had three in 1.5 months). The receptionist, out of nowhere, says, "she is not willing to prescribe oxycodone." I was startled by this, as I had not asked for this medication and didn't intend to. I asked her what other options there were...she says, "she's not willing to prescribe opiates." I said, "ok...but the nucynta is an opiate." She replied, "well, it's a synthetic."  I didn't know what to do, so I just blurted out, "can she prescribe some tramadol to get me through the next couple weeks?" Sure, no problem. 

    So, I've spent the past couple weeks on bare minimum activity (hard with a two year old). Basically lying on the couch as much as possible. I started researching and came across butrans and fentanyl patches. Got so excited. Wrote her a letter and sent it with my husband. Never heard back. Figured I'd tough it out and wait for my 2 wk appt.

    Had my appt today. She said fentanyl is super powerful and she doesn't want to go from a one to a ten (I had thought fentanyl and nucynta were similar in strength). She told me if I was 65, she would go straight to morphine, but "you're too young for this at 39." Then she told me how these medications cause constipation and mood disorders. Sigh.

    Anyhow, she said my next step is surgery. Put in a referral to the dept chair at the neurosurgery dept at the University medical center in the nearby city. Said my issues shouldn't be causing this much pain, and that her injections should have basically cured me  (herniated disc and SI joint disease). She filled a prescription for norco for 10 days and sent me on my way. 

    I'm glad to have the referral and some meds to get me by. Could have been worse, for sure.

    Hope this appt comes up soon, and with good results. The neurosurgeon has 4 and a half stars on multiple sites, with all reviews saying he "saved my life." I hope I'm able to get the appt within the 10 days. If not, I'm hoping she will refill until my appt date (once I know it). 

    The great news is (***tmi warning***), I got home and changed my clothes. Saw that my *monthly visitor* had arrived (I get a horrible level 9 pain flare 4-5 days before aunt flow comes- every month). It appears the injection at least stopped my flare! I wanted to call and leave a message letting her know of this success, but refrained, lol. The lack of the monthly flare, in and of itself, is a small miracle.

    If you read this, sorry it was so very long!!! 

    Best to you all! :)
  • itsautonomicitsautonomic LouisianaPosts: 1,802
    I hate that statement " if you were older I would give you XX ( surgury/ pain meds) but you are to young"..  Just says to me while pain might not discriminate doctors do in many cases. Interesting food for thought, if this was in the workplace and not meds a statement like that in terms of something at work it would basically be age descrimination. 
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • SooveritSooverit Finger Lakes region of NYPosts: 459

    I know :(

    Right now, I have a two year old that depends on me for everything and still needs to be lifted, carried, chased, etc. When I'm 65, I can rest. Right now is when I need the relief the most. And PAIN causes "mood disorder." I hate the "you're too young" comment with a passion. 

    I'm a social worker. In social work, we don't think in rigid, black and white terms. We consider how circumstances affect the individual lives of our clients. I was a disability advocate and completed countless "ADL's" for clients. I might have one client who had profound disability and pain, but had minimal adl's and a husband who did the housework, etc., then another who had to work, had a family, no personal supports nearby, etc. The latter (who may have had lessor pain/disability) needed the most intervention. I wish doctors had to have this kind of empathy training. 

    When I worked for the state, we had to complete empathy training. At that time, I was a cps worker. We were given a handful of bus tokens and a list of appts we had to get to (or else). We lost points for being late. I can tell you, that experience was extremely beneficial. Wish doctors had to spend a 'day in the life of.'

    Let's hope this next guy works out well. Thanks for your comment :)
  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Hmmm...just thinking out loud here. I can't stop the lingering thought that my pm just pushed me out because she a) thinks I'm exaggerating my pain b) lying about the effectiveness of meds/injections c) doesn't want to have to deal with pain meds.

    Though she was nice enough about it, it was frustrating to hear her say so many contradictory things. For example: she said I reported the injections didn't help me at all. That's not true- I reported that the first si joint injection was 100% effective, but only lasted a week. I reported the epidural was 50% effective, but only lasted 1.5 weeks and caused new pain and increased other pain once it wore off. She also gave me a lecture about the risks of long term ER opiod meds, and said she didn't want to prescribe them for someone so "young." Yet, just two weeks prior, she had told me how much she believes ER pain medication was a better fit for me and prescribed nucynta ER and IR. She referred to the tear on my MRI as "a small tear," yet, I know it is considered a significant tear at 10mm (and the other specialist had said so, as well). If I tried to respectfully correct what she was saying..."well, really I had said...," "I was under the impression a 10mm tear was a big tear..." I basically got shut down with a hand to the face, and she continued with her explanation. 

    She also suggested my pain may be driven by an underlying gyno problem. I think this also, but I've had a transvaginal ultrasound and pelvic ct. My gyno said I habe four fibroids and two paraovarian cysts on each ovary, but he wasn't concerned, and didn't think they would cause pain, so he kinda brushed me off and have me bc pills. 

    Anyhow, just anxious about seeing this new dr. an hour and a half away. What if she wrote things that will cause him to doubt me? What if he won't manage my meds? What if I get a surgery that sets off a cycle of more surgeries? Just worried. Or - this could be it, and I finally get fixed! 

    Also just found out my brother (who has been suffering similar problems that were hard to diagnose) had a intestinal scope (random bc they couldn't find the problem) and they found cancerous polyps!!! He's only 42! 

    So, then I think maybe cancer is in my body growing and growing, and they just aren't looking for it! Ahhhhh!

    Ok...I feel better just purging those thoughts. Time to get on with the day!

    I wish you all the best in your journey to find relief! :)
  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Just updating/getting my thoughts out.

    I can't see that neurosurgeon until June. I see his NP later this month to determineif more testing is needed before i see him. 

    My pm doctor gave me 3 5/325 Norco per day for 10 days 11 days ago. I've made them last by only taking them in the morning and after lunch (the busiest time of the day for me caring for my toddler on my own). I take tramadol for the rest of the day, but, for me, it's just a smidgen above a couple xs Tylenol. 

    I was very grateful to at least have the three norco per day. I have only one left. I called the pain clinic two days ago and explained that I cannot see the neurosurgeon as soon as they had thought. I asked for a refill to get me through until I see the other doctor and hopefully have them take over meds. They have not called back. This morning, I called and left a message on the rx refill line (at 8am). It is 12:15 and they have not called back. It's Friday and my mom, who I have not seen for three years, is coming in for a week tomorrow. I can't get up and clean the house, and I hate the thought of not being able to get out and do anything with her due to pain.

    I find it completely unacceptable that they have not returned my calls. As you guys know, when you are coming close to being out of meds, and you don't know if/when they will be filled, it is a crisis. My husband works in the unit next to theirs at the hospital, so he is going to go talk to them in person if they haven't called by 2:00. 

    I'm so sick of meds and all the anxiety around when/if they will be prescribed/refilled. I wish I did not need them. 

    I have no one else to call for them. My pcp referred me to pain management for this purpose- to have my medication managed. I haven't seen my ortho for many months, though I suppose I could try them. However, I have a contract with the clinic, and the ortho is in the same medical program (so likely would not want to mess with meds).

    I don't know what to do if they do not call me back. I don't know why they haven't called. I don't know why my PM put me in this situation to begin with. 

    Ugh. SO OVER IT! 

    Happy Friday everyone. Wishing you relief and peace :)
  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Just another update:

    My PM had ref'd me for a surgery consult out of town (which took place today). She prescribed me a reduced amount of my medication  (norco 5/325) to hold me until today (the exact date/time of my surgery consultation). She did not explain why she reduced or why she would not just fill for 30 days. I had thought this was awkward. Why would a doctor just seeing me for a consultation want to take over my meds? What if they don't? 

    My husband works as a social worker in thd unit next to the pain clinic, so I asked him to stop by and ask them to clarify: is my doctor's expectation that this new doctor take over my meds? They said yes- that my PM didn't feel there was anything else she could do for ne, and had referred me to a higher level of care. My husband asked them what happens if they don't refill the meds? They said to call them right away. My husband pointed out that my appt with the neuro was at 3:30, which is the time they stop answering calls at the clinic. He asked if they would just go ahead and refill just in case...in order to avoid a lapse. They said they wanted me to ask the new dr first (actually, I didn't see the doctor, I saw his NP).

    Anyhow, long story short, at the end of the appt, I ask the NP if she will be refilling my meds, as that Is what my pm insisted. She said they don't prescribe medication until they do surgery. She said she would sent a note to my doctor explaining that.

    I tried to hold on to my last pill, but the two hour ride back was too much :(

    Now I'm back in crisis mode. This little bit of medication at least gets me through the first part of my day- while I am home alone with my two year old. So I can get up and take care of him.

    I'm just beside myself at this utterly unethical treatment. She's my pain management doctor. She's supposed to be managing my pain. She should have contacted the neuro's office herself to be sure they would cover my meds. Or, if she no longer wanted to treat me, she should have made that clear, and , as is typical, given me 30 days worth of meds so I had enough time to establish care elsewhere  (or at least get to my pcp for help and another referral). I'm left feeling like she doesn't care about my well-being at all. I've been a polite and compliant patient from day one. I just don't get it :(

    I feel like I'm cursed :(

    Does anyone have any thoughts on this? Could really use some feedback about this.

  • SooveritSooverit Finger Lakes region of NYPosts: 459

    After being ref'd on from pm doctor  to the neurosurgeon in the nearby city,  I saw the neurosurgeon's NP, who ordered a new MRI. Had the MRI a few weeks ago. Actually, I think it has actually been a month ago at this point! Time is passing quickly in a blur.

    The NP had decided to simply call me with my mri results, but I called and said I'd prefer to discuss my results in person, and have a chance to see the neurosurgeon himself. They said, at that point, he was booking into late July, and if I chose to see him, they wouldn't be
     contacting me about the mri at all until I saw him that day. No problem - I made sure my primary would get a copy, so we could at least initially see what has developed. 

    Despite several calls to the neurosurgeon's office, as well as my primary's, to ask to have the report made available, it hasn't. I signed ROI's with both providers to exchange info, so that's not the problem. I don't know what the hold up is in providing the mri results! 

    I've been limping by on the reduced amount of meds the pm sent me away with. I'm thankful my pcp has been refilling them, but I had thought this was only temporary, until we figured out what was going to happen with surgery. Right now, the meds don't adequately cover pain, and leave me with painful gaps in the day. Yes- better than nothing :/

    I guess this is just a vent, really, though any comments are welcome. 

    It sounds whiny and self-pitying, but I just feel like Murphys law is ruling this whole spine issue for the past year. Nothing goes as it should, no one seems to really care at all, my efforts seem useless- or actually seem to backfire on me, I've had some really undesirable characters in my medical care, and I just can't seem to move forward! 

    I'm totally in limbo! 

    So, today I will try to back door it with the MRI report. I'll call medical records, have them email me an ROI (even though both offices have them, already), and I'll have my husband fax it back. Hopefully, they will release to me a copy of the report. Once I get it, I'll see if my primary will refer me elsewhere. I already don't like working with this neurosurgeon's staff at all. The surgeon himself is supposed to be the best, and also be very kind and patient centered, but that rose has way too many thorns! 

    My pain has drastically increased in the past couple days. I think the epidural really reduced the si joint pain, but it has come flooding back :(  now, even with my full amount of meds at their peak, the buttock, hip, groin area is hurting deeply.


    I just feel really down today and needed to purge that.

  • Ellen625EEllen625 New Jersey, USPosts: 612
    Hey Sara,
    This sux! I was able to get a copy of my mri pics the day I had it done plus I was able to register and login to the radiology website. Not that it helped because I didn't know what the heck I was looking At!

    I guess I've been lucky. My neurologist who I can get into fairly quickly gave me tramadol. She recommended I see a neurosurgeon. When I finally found one that takes my insurance, they wanted me to wait a month or so  to see him. I told them I couldn't wait that long. They found someone else in the group that I could see a couple of weeks sooner. Still too long, but whatever.

    He gave me an rx for percocet 5/325 to hold me over until surgery next week.

    I don't think you are whiny at all. I couldn't even imagine going through this with a little one at home.

    I hope you get the relief you need soon!
  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Thank you for your kind response and the validation, Ellen :)

    I'm so glad to hear you are in good hands, and I wish you the best with your upcoming surgery!

    I'll get it straightened out with the MRI report. I just gotta bushwack my way through the thicket ;)

    I have tramadol and norco, it's just barely enough to get me through a typical day, but not enough for the bad days. I could ask my pcp for an increase, but I just don't feel comfortable. I feel like he did me a favor resuming the meds, as it is. 

    The hardest part of a day like this, is knowing I'm letting my two year old down. I'm super distracted, really down, and I just want to lay here on my heating pad. He is so sweet and cute. He comes to the couch and takes my hand to pull me up, asks me to stand up and play ball, to take him outside. I try to do those things, but the pain and pulling feeling sends me back to the couch. He ran up with a big smile to give me a hug, and his head smashed into my pelvis. And I hollered at him  :'( :(
    And he looked so surprised and ashamed.
    Of course I told him how sorry I was and hugged him, but it was done. No taking it back. I often think (hope) he's so young he won't remember me being this way when I'm better someday.

    And I just don't understand why I can't seem to get out of the weeds with a determination of how to move forward. 

    But, like I said, I'm just really complaining. Nothing can be done but for me to push forward and try to spur things along. I just don't feel like it today. Even canceled my chronic pain therapy appt.

    Ok, I'm just rambling now. Sorry to whoever took the time to read all of that.

    Thanks again, Ellen. It helps so much to have feedback and encouragement from people who really get it! 

    Take care :) 
  • SooveritSooverit Finger Lakes region of NYPosts: 459
    P.s. ellen! That gave me an idea! Maybe I can access my report on the medical center "patient portal."

    I'll give that a try!
  • Hi Sooverit
    I don't comment or read a lot of the posts due to my own hell world that has been going on for two something years. This living in pain  everyday day in and day out plus dealing with the medication world and doctor's, tests etc. can really get to a person. It is hard to take the day when you are in pain and just get by let a lone deal with being a Mom. But you have a wonderful motivation there to keep fighting for answers. I admire you I can read into your words how much you love the little one and want to be well to enjoy that wonderful child. Don't beat yourself up your are doing the best you can just keep fighting on till you find a doctor who will listen and help you.
    We have several of the same symptoms I currently have had numerous injections no relief, MRI's, X-rays, CT scans which showed cysts on the spine and kidneys (no concern  they said) arthritis, inflammation, tear muscle hip, DDD, sciatica, nerve issues legs and feet, hands and arms hurt numbness. 
    I have been to several doctor's and finally got one to send me to a TP I wanted to go to who deals with Si dysfunction.
    I am currently doing TP to strengthen my left side, balance, massage and Graston which is a rubbing with metal tools down into the muscle wow talk about painful. But I will do what it takes to lessen this pain.
    The thing is what I come to find out through reading posts, spine info. on the subject and a couple of dear friends that I could have this issue, although it seems pain in the lower back, hip, butt, groin, waist can be due to other things hard to get answers like you said. I was told Doctor's don't accept this as a cause for the pain I am having yet I can go to another place and it is yes it all can drive a person crazy. But we have to keep trying right read get educated there is  a new Video by spine health have you read that? I am sure you know most of what is there but I found it interesting in how they felt it should be diagnosed and treated. I always had the problem with how two people can have the same symptoms but never be given the same tests or even do tests available in order to avoid mis-diagnose or come up with the right one. 
    This pain is terrible I had back pain before this and it was not even close so I pray you find some help. Please continue to post your progress so we know how you are.
    Best wishes Sherri

  • Sorry I know you post on other subjects I just was hoping you would continue to let us or me know how you are doing. I try to keep up on posts but lately not doing a good job.
    Thanks Sherri
  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Hi sherri!

    I've been meaning to get back to you. Sorry for the delay. What a kind and sweet message you sent. Thank you!

    I wish I could say I have made progress, but I haven't. I didn't follow through with calls or anything. I did reschedule my therapy appt and went to that today. That always helps give me a boost. I'll try again tomorrow. 

    I woke up this morning with the usual stinging, swirling pain around my disc. Then came a most awful pain above both buttocks. It's a nauseating pain. It is hard to describe. It's kinda like the cramps you get in that area when you are seconds away from explosive diarrhea, but non stop. It's these times that I think, Omg! I have cancer! It's just a different pain :/

    But I got through the day. Managed to put a healthy meal on the table for my family. We just started getting a CSA box from a local farm. There's nothing like truly fresh produce. So bright green. I don't eat dinner usually, but I might have to splurge later tonight.

    Like I said, wish I had something more positive to say, but it is still the same. I'm just trying harder today to not turn into the incredible paingry (hey, that's my new word! pain plus angry! Lol!) hulk. 

    How are you today? Very well, I hope.

    Sara :) 
  • Sara
    Sent you a private message.
  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Ok...here's the latest mri results (just had them delivered to my mail):

    * At L2-L3 and L3-L4- left sided foraminal/extraforaminal disc protrusions. "This lesion appears to (blank) left sided neural foraminal stenosis at L2-L3."

    * At L4-L5 and L5-S1 there are posterior annular fissures and posterior disc osteophytes and mild bilateral facet and ligamentous hypertrophy. 

    * minimal leftward convex scoliotic curvature centered at L3.

    They have requested previous MRI's to compare. 

    Dang. I though I had one disc that was causing the problems. 

    It doesn't seem so bad reading it, but I all I want to know is how they can fix it. Stop or reduce the pain. That's it.

    Next stops: follow up with neurosurgeon in july, then new orthopedic surgeon who specializes in si joint in august (I self referred to him today). 


    Sara :) 
  • Wal62WWal62 AustraliaPosts: 6

    Hi Sooverit

    I just hate, hate, hate "You're too young" for this procedure/medication/whatever.

    I recently had a arrogant condescending ortho surgeon say those exact words to me regarding my extreme hip pain and inability to continue effectively with my rehab schedule from back surgery.

    Him "Yes I'm seeing some degenerative condition in this joint and a very limited range of movement."

    Me "Well what would be the process to repair the joint."

    Him "Oh you would really require a full hip replacement but I wouldn't even consider that at your age."

    Me "So I'm 54. I can't walk without a walking aid. I can't continue with my rehab schedule properly so that's causing flow on effects. I am in constant pain and reliant upon numerous pain medications. What would be next for me."

    Him "Well you would really need to have the joint replaced but I wouldn't consider it until you are at least 60."

    Me " So you want me to continue to suffer. Become less active and walk with a stick for another six years."

    Him " Well I wouldn't consider surgery because these joint replacements only typically last for 10 to 15 years."

    Me "So I don't deserve to move around reasonably pain free and with some semblance of activity".

    Him " I would like you to come and see one of my associates, he's more into hips than me."

    Me " So you're saying you don't really know what your talking about."

    Him " Oh yes I do, we wouldn't consider hip replacement but it could be worth travelling down (only 3500km) to see him.......you do have private health cover don't you?"

    Me "Yes I have top private health cover but you can go and shove.........................."

    Needless to say he's no longer on my care list. I hear you.................a lot need to walk (or hobble) a mile in their patients shoes.

  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Good morning, friends 

    Rough times lately. Suddenly, my back is hurting like never before. It's a mechanical, hot, sharp, achy pain that covers the full area above my buttocks. I usually get the most relief laying flat on my back, but now I cannot find a position to sleep or sit in. The bottom of my left foot hurts bad, and my knee is burning and stinging incessantly  (have separate patellar disorder). I'm hoping I just did something to really PO everything down there and it will pass. I'm hosting a picnic for my moms club late morning, and I'm kinda wishing I had cancelled. Oh, well. Now that I've got my complaining out of the way...

    I'm so blessed to have a very caring and calm primary. I broke down and called them yesterday and said my meds just aren't working and I can't take the pain anymore. They got me in right away. My doctor took so much time talking to me and reading over my mri results. He had a look of compassion on his face (sad that, in my case, that really stands out). He just was very caring and attentive, and did not hesitate to change my meds when I asked if it was possible. He also was excited to tell me there is a very good new rheumatologist in his office he wants me to see.

    He asked me why I had told him my meds were working well enough at my last visit. I did not know what to say. I finally just told him that "they were never enough, I just didn't feel comfortable saying so." He said, "you have to call me when the meds aren't helping or you have to take more, ok?"

    He talked to me for a few minutes about new regs. He said, "
  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Hi folks,

    Today I finally had my neurosurgeon appt. I waited an hour, as they were packed. That never bothers me, as I see it as a sign they take time with their patients. 

    First to come in was the NP I met with before. She had a medical student with her. She was extremely friendly this time ;)

    Next came the neurosurgeon. He was quiet and all business, but not unfriendly or disinterested. He asked a lot of questions and seemed to really try to understand, while also spending a lot of time looking at my scans. 

    Next thing I know, he leaves to get another doctor. This doctor comes in and asks more questions. Very friendly. He says he believes strongly that I have pudendal neuralgia. He and the neurosurgeon go back and forth discussing it. The neurosurgeon says it's possible, but there are some things that don't add up. 

    So, I'm going to get a diagnostic pudendal nerve block under full sedation with live CT.

    The neurosurgeon doesn't think my disc issues are the main culprit, just players in the game contributing to exacerbation.

    I still believe strongly that it is predominantly the si joint dysfunction, but I will cooperate and see where this goes.

    I have another appt with an ortho spine surgeon to see if I'm a candidate for i-fuse. 
    It was truly great feeling like I finally have doctors who are interested in solving this mystery. I did not feel blown off or dismissed, or as though I was exaggerating. 

    Anyhow, that is the latest. I feel like I am at least close to getting some closure and a clear path forward.

    Sara :) 
  • Bruce EitmanBruce Eitman Akron, OH, USAPosts: 1,128


    Having a surgeon do that seems exceptional.  I hope that it leads to relief for you soon.

    Spine-health Moderator

    Read my story at Bruce - My Story
    ACDF C4-C5-C6-C7, and getting better every day
    It has been a process of healing, learning, exercising, and resting - and figuring out when to do which.

  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Hi Bruce,

    Yes, it was an exceptional experience. Just to see them active and interested was incredible. 

    The neurologist I'll start seeing has an amazing resume. He's a professor of neuromedicine at the University, he gives lectures on pain and pain treatment, he's on a professional panel for the FDA for medication, including buprenorphine, for chronic pain, he writes for multiple medical journals, went to Harvard, appears to be an advocate for pain patients, has won many awards, and is the director of neuromedicine at the pain center. 

    I'm hopeful, but there is a part of me trying not to get my hopes up, as I have been disappointed so many times. 

    We will see how this goes. But it was a great appt that left me feeling like I'm in the final stretch of getting some closure on this.

    Sara :) 
  • SooveritSooverit Finger Lakes region of NYPosts: 459
    Hallelujah! !!

    Getting si joint fusion both sides! Starting with left side in a few weeks!

    I could cry!

  • Was that a champagne cork I just heard popping up your way?  WOOHOO!!!!  SO excited for you!!  You're getting closer to realizing your dream of becoming a patient advocate!! 
    Kimmy72, Spine-health Moderator
    Firm believer in PMA!
  • Bruce EitmanBruce Eitman Akron, OH, USAPosts: 1,128
    Great news Sara.  I am looking forward to hearing about your results.

    Spine-health Moderator

    Read my story at Bruce - My Story
    ACDF C4-C5-C6-C7, and getting better every day
    It has been a process of healing, learning, exercising, and resting - and figuring out when to do which.

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