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New To Forums in General - Suggested by Doctor and Social Worker

Hello

At the behest of my medical team it's been suggested I reach out to find someone (multiple someones) online I can talk with about my condition.

I'm 40, no children.  In December of 2015 I was given a Dx of Spondylolisthesis (Grade I) caused by congenital stenosis and congenital bilateral pars defects.

Fast forward a little over a year and on Valentines day 2017 - TLIF surgery (L5-S1).  

Fast forward a little less than a year.  January 2018 - MRI reveals congenital stenosis in cervical vertebrae causing a severe nerve compression which is further causing numbness in pinky and ring finger, as well as (just recently) part of my palm;  included with these symptoms is about 10 pounds of muscle mass loss and 60% strength loss in what my doctor says are the extensor muscles of my thumb, part of my bicep and my delts and traps.  All centralized on left side.

Thing is, I don't like to sit around being in pain but also have zero family or friends in Los Angeles (living in my car there currently).  I had to move here from New Mexico because the insurance there spent 11 months debating with my doctors (ya know, insurance agents, NOT doctors) about what was medically "necessary" vs. "elective."  It's a long story but my neurologist in Albuquerque tried her best and suggested I move to a state/city with more money, hence L.A. 

She was right, within 2 weeks I had full coverage insurance (a type of local Medicaid) and within 3 weeks of that I had the surgery.  For which I am immensely grateful as I was becoming increasingly unable to walk.

I'm a healthy individual by nature.  This situation is annoying to no end but I talk about it with no one except people at the gym.  Yes, I go to a gym and stretch (and exercise when possible in all the ways I've learned in PT) 2 times a day (lately it's only been 1 due to knew problems). 

I'm really stressed out.  I'm young-ish (I've retained my corresponding young-ish personality and appearance by also not having children - thank god), I don't drink, I don't smoke, I eat well, I like to be doing things ... I have just found it's really hard to make friends at 40 and doubly hard when you can't do all the things you used to do (I used to hike a lot, now much less; used to ride a bike everywhere, now can't ride at all unless it's stationary or the ground is perfectly flat the entire time).

I''m scheduled for an EMG in a month to have more testing before what will likely be another (or 2) fusion surgery. The EMG is due to the fact some of my symptoms don't completely correspond to where I'm getting the compression on the MRI.

I have exhausted all social services (EBT, Medi-Cal and GR) and have a pending SS claim (I'm looking at 18 months my attorneys said). 

I don't generally get on the computer unless absolutely necessary; I don't own a phone, I'd rather read books and newspapers (my friends in TX and NM refer to me as old school nerdy with a hint of hippy - I really really enjoy the outdoors, particularly all the beautiful mountains you have in your state - been all the way to Mt Shasta and everything inbetween).

It would be nice to talk about maybe some exercises I could do in the meantime for cervical compressions, maybe meet some other LA types experiencing this (I'm mostly in the Valley - Burbank, NoHo, Van Nuys areas - going to county when I need to (LAC)), and how you deal with really bad pain days.  I haven't had a zero pain day since that day in December.  Until recently I was able to keep to what is for me a manageable 2-4 level (now it's about 4-6, best I can get it).  I don't like being on medication and THC, while it was helpful, had too many weird cognitive side effects, so that ceased 4 months ago.  I like an active life and find that medications generally render me inactive.

Anybody out there??

PS - whoever owns and maintains this website, super helpful!! I make reference to it to my doctors all the time!

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Comments

  • DCAUDDCAU Posts: 4
    edited 06/12/2018 - 12:34 PM

    Hi there,

    Just wanted to welcome you to the forum and express sympathy for what you're currently going through.

    Unfortunately, I don't live in LA (or the US, for that matter), so can't be of too much help for you about what to do in the local area.

    There are some very helpful contributors on this forum, so hopefully one or more can provide some assistance better than I can.

    It sounds as though we are suffering through some of the same conditions, in my case, L4 pars defects resulting in grade 1 anterolisthesis, secondary moderately severe facet joint arthropathy at L3/4, L4/5 and L5/S1 along with the para intra-articularis defects and a narrowing of the spinal canal (spinal stenosis) along with a shallow disc bulge.

    I've had some burning/tingling/numbness sensations in my feet and left hand, but this *might* be as a result of me being deficient in B12 (certainly my spinal issues exist regardless of my B12 levels).

    Are you able to work at all?  Are you still living in your car?  Is it possible to live between Albuquerque and LA?  I can't imagine that living out of a car would be much fun (or good for your back).

    Cheers,

    Darren



  • Rob:

    I am glad you found this forum: it has been such a help to many of us!

    It sounds like you have some chronic & serious conditions, and I'd be careful about beginning any new exercise regiment without clearing it through a doctor or PT.

    Sorry you had to leave your home- I understand, as I live in NM and the health care system here leaves something to be desired!

    I hope you can make some friends and put down some roots. It does get more challenging to move & make friends the older we get.

    Good luck & keep us posted.

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  • [Deleted User][[Deleted User] Posts: 1,095
    edited 06/12/2018 - 5:49 PM
    The user and all related content has been deleted.
  • edited 06/13/2018 - 7:23 PM

    Hi, first to GrtGrandma

    I am 40.  Male.  Without children.  I've always been interested in a healthy lifestyle.

    It's hard to make friends at this age because most people have children in their formative years so they  "don't have time" ALWAYS following up with "you wouldn't understand you don't have children."  Children seem to suck the lifeforce out of everyone my age.  They have no desire, energy, longing, time or money to do anything else except tend to their children.  I realize it's it's either  your "mental confusion" or something else, but seriously, I'm quite detailed ...

    EDIT: some 20 minutes later to grandmablahblah .. (who I think is a troll because ...) "... how you get to eat at all"  Really?  You don't understand my drive for basic survival?  I'm lost, you think I'm suicidal?  You think I don't value my existence?  Are you insane or just predictably boring Trump inspired "human"?

    To the other people, yeah this sucks.  I just got word on the confirmation on my EMG/NC.  They won't proceed with treatment/surgery (which makes sense and I agree with) until the results of the test (7/17).

    As to the NM guy.  I don't know how you were able to get coverage there but I was not.  The way they maneuvered around the new ACA requirements regarding "pre-existing" conditions is complicated I won't go into it.  I have friends and support network there and simply cannot go back as I cannot get the coverage I need.  I also have a lawsuit so it would be UNadvised anyhow.

    THe doc is fully aware of how I'm attempting a PT plan, I showed him because I am THOROUGH and HONEST with him about everything, and he is okay with it but it hasn't worked since January, still losing weight and strength.

    It's apparently up and down my spine including in the thoracic area.  I know I seem irritated because this came on when I was like like thirtyeffin'sevin and my life and jobs and financial stability were instantly swept out from underneath me.  It's irritating to now end.

    I exercise because I don't want to be on drugs and the PT for my TLIF told my spinal stability exercises are the "most important thing for your condition."


  • The user and all related content has been deleted.
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  • edited 06/14/2018 - 12:41 PM

    Yeah, well at my age in my condition MY MOM HELPS ME OUT (approaching 70 years old) as much as she can as a "retired public school teacher" in Houston, it's quite embarrassing.  Yeah, you stressed me out, I didn't realize I'd be met with such questioning and resistance as I had with your comment.  I thought this was a "support" group, not an "unnecessary criticism" group.

    Trust me, I've done everything I can to NOT have to ask anyone for help but unfortunately that's the place I'm in and I hate it immensely.  My mom had to return to school (mostly substituting) to help me out.  Her "help" is not kindly received (hence it being in quotes - she does not know how to help unconditionally)

    You all seriously have NO ONE in LA who I could speak with?  Seriously??  Come on, someone has to know someone else .... LA is alllllllll about networking and being annoying and striving to be famous (what anyone who's read anything about this place is mostly accurate) but the ACTUAL Angelenos, not transplants trying to be all shit aforementioned, are quite kind and have a sense of community.  I realized this about 12 months in (I'm just over 1.5 years here now); being born in VA, coming from the hypercommunal Santa Fe, it was at first quite a shock ... but now it makes more sense.  It's not the locals who people read about who are not from here, it's the assholes who come thinking they will be the next (no, the likelihood you will is so low, give it up, be a bartender, it's what you all do anyhow)

    But LA is massive.  There is so much to explore and experience that I'M CONVINCED that SOMEONE on THIS WEBSITE/FORUM has to know someone who I could talk with ............ I'm just a dude who's experiencing  circumstances, I'm not trying to meet anyone, I don't want a GF, I just want to meet more (just very recently met a stunt actor who has "similar" issues before I drove to TX - where I'm at now at my mom's so I don't have to sleep in my car) who MIGHT know what I'm going through (up to and including the amount of bullshit I have to go through to get pain relief at LAC - good god it's ridiculous)

  • memerainboltmemerainbolt IndianaPosts: 6,366

    This is not face book. Or a dating site. Most members do not even put their city in. Yes, we meet people on here that become our friends, but they don't care what area they live in, that has nothing to do with our conditions.
    We are here to support, give personal experience advice, and to listen. But I, as a Moderator, will not have you condemning other members for any reason. No one has given you any resistance or unnecessary criticism.
    You need to read the rules.


    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • Hi Rob, Sandra is correct in regards to members here coming from all over the country and abroad. If a member shares that they live in LA, you might be able to reach out to them thru private message. Otherwise, I think you could find useful advice from non LA residing members as well. 

    I understand the pain you're living with can make you a bit hypersensitive, but you must realize that everyone here has probably experienced similar tribulations or even worse. I can say this since I've been here for a long time. I don't feel Grtgrandma1 was being judgmental about your circumstance; she sincerely wondered how you were getting along in your predicament and certainly means well. Launching personal attacks certainly is not conducive to making friends..seriously. 

     



    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
  • I agree I find grtg rather sweet and uplifting I've seen some of her caring post. We all just come here to share and help eachother we are from all across the country. We do not Judge or disvalve anyone. We all have a common bond.

    To take your angry out on someone and calling them a troll is wrong. No one has questioned or doubted you on that subject we tried to help with open arms.

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