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Mar 31, 2016 10:23 AM

I need some opinions please.

I'm having tingling & numbness just below the scapulae on both sides. I have pain in the top of the neck, mid-thoracic, mid lumbar, & Sacral-Iliac joints. My knee doc said I need a full spine evaluation. Most of you know my past spine doc always says, "there's nothing we can do for you," even though xrays plainly show disc & facet issues.

Questions:

Do I return to them and take a chance they might actually do something after 3 years?

Do I go back to an old Ortho doc I wasn't that confident with (wanted to fuse SI joints right at the start)? He's in with the knee doc and very close by.

Do I return to my original Ortho group, who fused the cervical spine in the 90's? Driving there will worsen my tremors and fibro pain.

Do I ask my PCP to refer me to a university spine hospital, which would require me to travel overnight, several trips a must (not an easy feat)?

Just trying to unscramble all this in my head, and with the fibro fog, I could use help with "thinking outside" the fog! Lol 😉

Mar 31, 2016 11:59 AM

Those are tough ones that I don't think anyone can help you with. Maybe write each option as a header and then pros and cons listed under each one. Sorry i can't help you

Mar 31, 2016 12:47 PM

It's OK Gotobef. It's hard for me too. I can't seem to short through the pros & cons. Lol

Mar 31, 2016 12:51 PM

Well Flappylady, you know me .. I will tell ya honestly ,a new set of eyes on your spinal disease and it's progression would be the best way, I think...I know exactly how it feels with all the other considerations you are dealing with but ..I vote for the Spine university!

Mar 31, 2016 1:42 PM

Thanks Terri. I do appreciate up front & honest. I wish my hubby would do so, instead of saying it's up to me!

Mar 31, 2016 3:34 PM

I also would try either the university or a whole new set of eyes for a full work up. There are many new procedures now that are way less invasive, less damaging, and easier to heal from. The "younger set" is getting the training in the newer techniques that could be far better for you over all.
Remember to ask for help. Maybe someone from your church or other group you know has an Aunt Muriel with a spare room right near the uni!

Mar 31, 2016 5:59 PM

Thanks PrincessChaos. I've read up on some of the techniques others here have had. The fact that many of these treatments involve needles, and are done awake... it scares the heebie-jeebies out of me! I have a high tolerance for pain, until it involves needles! Lol I plan to talk with my hubby this weekend, and then with my PCP.

I've thought about seeing the closest one again, and if he mentions surgery, to get a second opinion at the university hospital (they specialize in surgical second opinions, preventing many. They also do all the new procedures being done at many pain clinics. My pain doc just joined a large state wide pain clinic that also does them. But he hasn't been with them a year, and I wouldn't trust him to do those procedures on me. I'm no one's guinea pig anymore! Lol 🙂💕🙏🌼

Apr 02, 2016 3:01 AM

The new spine norm is do nothing until you have to, so even another set of eyes may not do much good. On the other hand it sounds like you are having new symptoms which would be cause for a new look at what is going on. It seems like an xray or mri to compare to prior would be a good idea. Knowing spine pain well I would start closest to home and work out from there but sounds like you don't have faith in the closest. I am questioning why your PCP isn't doing something more. My PCP ordered my xray then 2 of my mri. The 3rd I got in the ER. I have a mess but it beats the thought of surgery that could leave me a paraplegic or dead. Best wishes that you find your answers.

Apr 02, 2016 5:20 AM

I know how you feel flappyslady81 in 2005 my old gp sent me to hull royal as I couldn't walk at all which the then removed the noduales (knodley bits at base of spine) then I thought things would get a bit better but no in 2006 my ex pushed me down stairs when I eventually picked my self up I thought things were going to be alright but no a few days later I was back at hull royal which they found I had slipped a disc which they took half of the disc out but they couldent prove it that it was my exs falt later on I found out that they had damaged my bladder so if I was you I would go to the spindle university and get it sorted out and good luck

Apr 02, 2016 2:06 PM

OMG Flappsy, that's one hell of a conundrum... I wish there was a simple answer but with the questions you have and the info you gave us as to what happened or will be needed to go to each is hard. Perhaps your doctor can refer you to a completely new Orthopaedic Doctor that is close by that you can bring your films and have them look them over and take new ones to compare and see what can be done? The numbness under each scapular sounds odd to me. As you know, my spine is messed up from top to bottom. I have wicked pain under my scapulas but we are both suffering with different things. I wish I had some words of wisdom for you. I will keep you in my prayers and hope that you are able to write down all the pros and cons and make the best decision for you. {{{Hugs}}}💕🙏🏻🌻

Apr 02, 2016 4:06 PM

Thank you everyone. Each of your ideas are very good thoughts. I'm hoping my PCP can help me at my next visit. I haven't seen him since the numbness started in the scapulae areas.

Apr 12, 2016 6:09 PM

I emailed my PCP the same questions over a week ago. He's seen my tremors and how bad they can get. I heard back today. He's referred me back to my closest Ortho spine doc, who hasn't seen me in 3-4 years. He said they should be able to see any changes that have occurred since the past xrays. He said he also feels it would be a waste of time with the one I've seen the past 3 years, and they've done zilch. He wants to see what's going on before referring me to the university hospital; something we can do anytime he said. BTW, I've lost another half inch height... Shorter & fatter! Lol 🙂💕🙏🌼

Apr 13, 2016 1:02 PM

Flappsy... I'm shrinking in height and gaining width myself.. LOL!! We can only do so much. I'm glad you have a direction to go for your tremors. I hope they can help you. Moparmom got 2 dx today of Lupus and Sjrogens!! She is looking for info on the Sjrogens because her numbers were 6x higher than they should have been. I guess I better go back to the doc for a more complete blood panel to see if my dx is confirmed even though I really don't want to know. Right now, I'm going to waddle to the bathroom and try to get this mess with my meds fixed. As always you're in my thoughts and prayers my friend. {{Hugs}} 💕🙏🏻🌻😊

Apr 14, 2016 2:20 PM

Dear Flappys-

I had something similar in the last couple of years. Take this with a grain of salt, but there's something called thoracic outlet syndrome where you can get neuromuscular impingement on your brachioplexus. This affects areas including your scapula, shoulders, neck, face, arms, and hands. It hurts like hell! Sometimes it manifests as numbness and tingling, other times it can be super acute pain when rotating or moving your arm and shoulder.

Keep in mind that I'm not trying to diagnose you without knowing more, but I wanted to tell you about something hat happened to me that had similar symptoms. My nervous system is out of whack from my spinal injury, so the brachioplexus problem, which usually lasts only a couple of months with PT, lasted for well over a year and a half.

I have a great pain doc. He views things on a zoomed out level because he knows chronic pain is immensely complicated. I go to him first, and if he recommends a specific kind of specialist, I seek it out. Part of the problem with going to a specialist is that they have a very specific hammer and either see a nail or don't. By working with someone who knows all of my issues first, I've finally stopped bouncing between dumbfounded specialists and targeting specific issues that are part of a bigger picture.

With respect to the brachioplexus, my doctor tried a few things. Part of the treatment is nerve meds, which can help, but not cure. We tried many many things, and FINALLY found something that worked for this specific problem. He decided to try trigger point injections into my shoulder and neck on both sides. I know you don't like needles, but in this case, it really really helped me after a few months of infrequent treatments. He basically takes a needle and tries to release the muscle sitting on top of the nerve bundle. He then injects lidocaine to numb it a bit. We tried cortisone injections in the same place, which seemed to help a bit. It only hurts for a few seconds and is sore for a day after....but the next day I feel so much better! I regained motor control and reduced muscular and nerve pain (as well as reduced the tingling and numbness).

I would recommend having your pain doc manage your specialists and maybe ask about nonstandard things like trigger point, on the off chance it could help you too. I swear it doesn't hurt that much!

I hope you find someone you trust and respect! Best of luck, and don't hesitate to ask for more details!

Apr 14, 2016 8:41 PM

Thank you for your input Loki. It's definitely something to think about. Unfortunately, our pain specialists require referrals, so I have to see an orthopedist first. But if he mentioned trigger point or any injx I'm going to ask him to refer me to my pain doctor I saw last time.

I've heard of the thoracic outlet, and I'm fairly sure that's not my problem. I've had cervical fusions twice and the discs above and below are shot! I've been told by multiple docs I need surgery but due to the high risk of paralyzation they won't touch me. Thanks again! I hope you have a good night. Hugs & prayers! 🙂💕🙏🌼

Apr 21, 2016 7:52 PM

Update: saw the Ortho spine doc today. He's not sure if I injured my neck when I threw up in March, or if the discs & joints have degenerated to where it's at now. My neck is even worse than what I expected. C3 has slipped backwards, towards the spinal canal, called Retrolisthesis. C2 is almost completely fused to C1. Also C7-T1&2 are collapsed even worse and slightly unaligned. He said this is all causing the headaches, scapulae pain & numbness, arm & hands tingling & pain... Radiculopathy/Radiculitis. He's putting me through some range of motion & strength training for the neck & shoulder & arms, which are weak; he said deconditioned. He said was will rely in a month and see if it's helped. He stated weak neck muscles, ligaments, & tendons can help discs to slide out of place, so he wants to try and help strengthen & condition them. He also mentioned it may require surgery if things worsen. We aren't dealing with the back until the neck is dealt with. I'm so thankful here's not blowing me off like the last 2 docs. He was attentive and explained things for me to understand.

Very very tired so going to try and sleep. Took a benadryl early today for itching allergies, and of all things it kept me from napping. Not use to rising at 5am and not sleeping until after midnight, but it's been this way all week, i guess from all my appts. Hugs & prayers you all have less pain over the next 24-48 hours. 🙂💕🙏🌼

Apr 21, 2016 8:52 PM

I'm glad the doctor listened to you and you had a good appointment, even if it's not good news. I hope the strength training helps

Apr 22, 2016 12:41 AM

Flappy people always list their pros and cons but forget to lists their trade offs when trying to make a decision. PROS. CONS

TRADE OFFS.

With every decision there are trade offs we don't think about or list. Could be helpful and make things clearer. Sounds like this doc is the doc you've been waiting for. Strength training may be the magic trick. Will pray for you and Your speedy recovery.

Apr 22, 2016 12:26 PM

It didn't even cross my mind until I was telling my hubby about the exam, but the last Ortho group of been under for 3+ years never sent me to PT, not one single time. At least not until Mayo diagnosed the imbalance and requested balance training, which my PCP had to ask for. That group either pumped me full of steroid shots or repeatedly said there's nothing they could do for me. Of course they identified I needed surgery, before the discs worsened, but they refused to touch me. This new group, my old group from 6 years ago (insurance list changes), they're about to start my third round of PT, on my neck & upper body this time.

I'm glad I decided to stay closer to home & my PCP agreed to send me back to them. It's like finally I'm moving forward instead of being stranded. Keeping positive hopes, thoughts, & prayers! Even if I do end up with surgery later, the strengthening and mobility will definitely be a plus come recuperation time. 🙂💕🙏🌼

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