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I just need a bit of direction and to vent

So two years ago an orthopedic surgeon told me I have degenerative disc disease, some people feel pain with it, some don't. I'm one of the people that feel the pain. I have "flare ups" that have a wide range on the pain scale. The past 2 years it wasn't so bad. Sometimes it was triggered but it was tolerable enough. I'm a very active person and enjoy exercising and going to the gym.

October 2019 I went out with a few people and after sitting on a hard bench for awhile I noticed my back hurting but thought it would go away soon enough.

It hasn't gone away, and has only become progressively worse. Mid January it became intolerable. I made an appointment with an orthopedic surgeon but had to wait over a month to see him. I went to my PCP for pain management (medications, they are not helping very much). I haven't been able to work since February 1st. Every little movement, even just putting on socks cause excruciating pain and I keep saying in my mind that I'm just a shell of my former self and it makes me so sad. I used to be so active. It seems like my doctor doesn't want to help me. 

When I finally went to see the Ortho doc he did x-rays and said I have advanced degenerative of the spine, that my back is wayyy beyond where it should be for someone my age (31). He gave me meds and told me to get an MRI and come back to see him. So I schedule the MRI (which I thought was weird, I thought his office would schedule it??). That's on March 17th. Then I call to schedule my MRI review with him and he can't see me until mid April?!??! ARE YOU SERIOUS?! What am I supposed to do?! I can barely move?!? I'm just sitting here in pain and just so frustrated with everything. My entire foot keeps going numb..I can't walk up stairs without pain going down my entire leg. 

I don't know. I'm wondering if I should try to find a different doctor. I like him but..I can't wait over a month every time I need to be seen by him. 

Does anyone have any advice on what I should do? I'm just tired of feeling helpless. 


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Comments

  • SandraD89 - I hate to say it, but I've been there, taking six months to see a surgeon and then years to get a diagnosis with each of my three ACDFs.

    Some things that helped slowly move things along for me:

    (1) Request to be on a cancellation list with the surgeon (in case someone else cancels so there is an earlier slot available).

     (2) If you have times were the pain is really bad, call the surgeon's office and ask what should you do for pain management until you can get to see the surgeon.  If you are in severe pain, they need to know.  

    (3) If you have times were the pain is totally out of control, go to Urgent Care or the ER.  Yes, you will likely be told at the ER that pain is no emergency, but there are short term interventions that can be performed to get you out of crisis mode.

    My point is, if you are in a lot of severe pain, be the squeaky wheel.  As you said earlier in your posting, in the past your pain would come and go.  If you are on constant severe pain, you need to complain to get any attention.

  • memerainboltmemerainbolt IndianaPosts: 4,459

    Welcome SandraD89 to the Veritas Health Forum.

    Have you thought about getting another opinion from a neurosurgeon or spine specialist? Second, even third, opinions can give you more options.

    While you’re waiting for a reply to your first post, please take a few moments to review the Code of Conduct and FAQ section, located under Forum Tools. There you will find important information about posting in the forum and helpful tips for new members.

    Have you read the article What You Need to Know About Sciatica on Spine-health? It explains what causes sciatic nerve pain in great detail. It also provides sciatica treatment options to help relieve painful sciatica symptoms. It’s a very comprehensive article and a must-read for those with painful sciatica symptoms. I hope you find this information helpful.

    Again, welcome to the Veritas Health Forum.
    Sandra
    Veritas Health Forum Moderator


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  • Well I got my MRI done, I have 2 bulging discs and a large extruded herniated disc at my l4/5 that's encroaching on my thecal sac.

    The pain that I'm feeling now on a daily basis, constantly is unbearable. I'm taking gabapentin 3xs a day. I have tramadol that isn't touching the pain and just got Percocet, but was only given 14 so I'm scared to take them in case, God forbid, the pain gets worse. 

    My left leg is just..dead. The pain, numbness and tingling is never ending. My last appointment with my Ortho doc was over the phone due to the coronavirus he referred me to a pain specialist for an epidural steroid injection. How effective are these for treating inflammation of this level? I just so badly want to feel like my normal self. 

    People around me are tired of hearing about how much pain I'm in but it's hard to focus on anything else. It's constantly there. I'm trying to stay mentally above how debilitating this has become. I'm secluded, not working, husband isn't the greatest with helping me..

    Ugh. This just really..blows.


  • memerainboltmemerainbolt IndianaPosts: 4,459

    SandraD89

    I am so sorry you are in so much pain. It's hard for people around you to understand how bad this is, they are not going through it and probably never have. Does your husband go with you when you see your doctor? If not, maybe you get get him to so he woud understand better. But I know how you feel. The pain can take over, you can't even think straight.

    I have had several injections, some work some don't. But that's me. My doctor will either do injections or put me on Prednisone or a Medrol pack for the inflammation. That works better on me, gets the inflammation down where I don't hurt as bad. They usually do them in a series of 3, which helps too. What options has your doctor given you? And, have you gotten another opinion?

    Right now everyone is secluded and we just have to make the best of it. I can't get out anyway so I'm used to it. This forum is a good place for you to complain, whine or cry, we've all done it. Take care and keep us posted.

    Sandra

  • Memerainbolt

    I'm so glad I found this forum full of people who understand what I'm going through. It really helps to just read about other people's situations and know I'm not alone with this.

    Unfortunately my husband always has to work during my appointments, but I would love for him to go with me to at least one. Maybe one day. I usually bring my mom along with me, she's an RN and can help me sometimes explain my symptoms. 

    The only thing my Ortho doc said was to try the shot and if that doesn't work surgery would be the next option. Are the shots painful?I was wondering  if a chiropractor would be of any help with a disc herniation? No one seems to really be on board with that idea but I wouldn't mind trying that before surgery. I did a round of Prednisone and that wasn't helpful.

    Here's a really important question that I desperately need help with: HOW DOES A PERSON SLEEP WITH INTENSE SCIATIC PAIN?! I absolutely cannot figure it out. I've used a wedge pillow. I try keeping my legs in certain positions. Nothing is working. I can sleep in about 2 hour intervals. 

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  • I don't consider epidural injections painful, I have had several and for me it just feels like pressure when they inject, of course you are injected with numbing medication first and that has a burning sensation for a few seconds.

    Sleeping with sciatica is tricky, I usually use my ice pack right before laying down, I also use a pillow between my knees, all that helps, but only to a certain extent.

    Take care and keep us posted

    Chip

  • memerainboltmemerainbolt IndianaPosts: 4,459

    SandraD89

    I don't think the shots are painful, you just feel pressure. Most of the time they are done under fluoroscope and you are numbed in that area. When I do get one, when I get home, I always take it easy for a couple of days.

    Right now, I am going thru that intense sciatic pain, like you. I've also tried every sleeping position position, with and without pillows. One thing that does help me is ice packs and my heating pad and stretching. At least it gets me thru the day.

    I hope you find some relief soon. And take care.
    Sandra

  • SandraD89SSandraD89 Posts: 4
    edited 03/30/2020 - 2:32 PM

    Little update-

    I went to see the pain specialist today. Turns out the governor of VA put a stop to non emergency procedures due to the risk of covid-19 infection until May. That includes epidural steroid injections.

    Sooo....here I sit lol. I made the appointment for May and the doctor said he would keep me comfortable until then which I realllly appreciated. He's actually the first doctor that made me feel like he actually understood how intense and unrelenting this pain is. At least at this point I don't have to worry about pain medication and my PCP cutting me off. 

    I'm going to try to go out in a little bit and get an ice pack. I think cold would really help. At this point it hurts to much to drive so I have to wait until my husband gets home from work. 

    I guess this means I won't get back to work until some point in May. Oh well. 


  • SandraD89 , I meet up with a radiologist this afternoon ( he is a pain specialist) I am seeing this dr for the first time .  I have been told he will be sending me for more imaging . I know we will be talking about injections in my lumbar, thoracic and neck. I  am expecting to wait till June now this virus is here, but hey what’s another couple months wait in the scheme of things. I hope you find relief with that cold pack. Harpy 

  • memerainboltmemerainbolt IndianaPosts: 4,459

    You can always put ice in a bag and cover with a towel. I use an ice pack and sometimes alternate with my heating pad.

    I also needed to get an injection but that won't happen any time soon. I just finished a round of Prednisone so I can't take any more. Like you, I'm stuck with the pain. But I also take Gabapentin which does help.

    Take care and I hope the ice helps.
    Sandra

  • memerainboltmemerainbolt IndianaPosts: 4,459

    Harpy

    How did it go with the new pain specialist?

  • Hi Sandra, my apt is 3 pm this arvo. Just gone 8.15am so got a wait yet. But some good news on telly this morning , only 122 new virus cases in our state in the last 24 hours, a big drop. 

  • memerainboltmemerainbolt IndianaPosts: 4,459

    That is great news, hopefully it will now start settling down. As of Sat., we have 7 cases in our county. Most probably because we are in a very rural area.

    Take care, let us know how it goes.
    Sandra

  • Sandra I'm late into this discussion. If you are in pain-the epidurals are welcome relief. They are injecting steroid type solution which helps settle the nerves in the area.  I found alternating heat and ice helps. We joke at my house that we often have more ice packs than food in the freezer. I found dampened hand towels put into large Ziplock type bags and frozen worked well and could be re-frozen. Our daughter used bags of frozen peas.  We just marked the bags DO NOT EAT as they went on her soreness while cold and then back to re-freeze.   We are also a 3 heating pad family. ! in the chair-1 on the couch-1 in my bed (shuts of automatically after 15-20 mins).  Hope you find some relief and encouragement.

  • SitsalotSitsalot Posts: 11
    edited 06/21/2020 - 8:54 AM

    I bought 4 very large flat gel packs that I use at night for pain and sleep. the relief is amazing. I also wear a brace and have an ice sleeve on my low back to control pain. I also take Naproxen and Tramadol. 

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