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sorry I havent been on forum *** pls help!

virginiapvvirginiap Posts: 508
edited 06/11/2012 - 8:49 AM in Recovering from Surgery
Hi friends, haven't logged in since my Myelogram, been feeling absolutely awful. Seems every step forward pulls me 3 steps back.
Myelogram showed recess narrowing due to OSteophytes bilaterally at fusion site, (L4-5), hardware placement & anchoring screws looked good as viewed centrally.
L5-S1 has degeneration (which I knew) and discogenic narrowing, radiologist states this is probably a congenital variant. (I do have that 6th vertabre in lumbar region.
L1-2 had a previous protrusion 4mm in canal, (this was measured in Sept, about 3 weeks post fusion, also this protrusion has been there for at least 4 years. Now it has grown and is 5.2 mm and is touching several of the cauda equina nerves as it passes the area. radiologist states it is a fairly prominent right paracentral protrusion.
if you remember, post ALIF I've been suffering bladder issues. I've started bladder rehab & retraining, as well as pelvic floor rehab & stimulation. not sure if its helping, had to stop therapy due to infection.
post op I've been suffering bladder issues, frequency, retention, spasms & pain. additional test show sphincter dyssenergia and atonic bladder. I am now on my 4th uti in 3 months! strong strain, with over abundance of white blood cells & crystals in my urine. also one of my fallopian tubes is dilated and causes more pain. Constipation is out of control and GI doc has me on regimen.
pain doc suggested ESI at l1-2, which I did last Tuesday - no relief!
sorry I'm rambling here, just frustrated! my nerve pain in leg has increased since ESI. I was to do another injection tomorrow, but due to my infection, doc called today to reschedule till 12/28. Then he called back to say he us not sure he wants to repeat?? he wants me in office on the 27th to discuss other options....he had his nurse make the calls, So I'm not even sure of his thoughts, treatment plans...... frustrated!
on 12/2 I left my Myelogram cd with my surgeon with a nice note. He was expecting it, originally he did not know about the Myelogram, but when I saw him on 11/30, I told him I had it on 11/22; ordered by pain doc and he said he wanted to review films..... still haven't heard from him (over 10 days - I did leave a message with his nurse to confirm receipt of the hand delivered cd, I guess I have to call again!)
my left leg nerve pain is increasing, not sure I WANT to stay on nuerontin, makes me, dumb, forgetful, NOT me, I cried for two straight, this is not me. also I am now dizzy, almost fell several times, not sure why, antibiotics, neurontin - which I recently increased, or just more leg weakness.
I know we are not doctors, nor are we able to give medical advice, but MAYBE someone has similar issues .....so I don't feel so alone!
I go to doctors almost every day sometimes 2 a day, meds are driving me nuts and I'm unable to return to work in any capacity at this point.

god bless you all and grant you healing & relief.
I look forward to your caring & insightful replies.

ps. excuse any & all typos its like near 3am and sleep deprivation is taking its mighty toll and then adding a tax....LOL!

missed you my fellow spineys!



  • Aw, I'm sorry to read this, and certain that you won't even remember me (I've been away for quite awhile), but had to post and let you know that even though I don't have any words of wisdom, I did read your post and was sad to hear of such a bad time you have been having. It's been awhile for me, but even the last UTI that I had was painful, and here you are on your 4th in 3 short months.. along with everything else!!
    I would not get the ESIs (or any other procedures) until I had my health under control, but that is just my opinion, esp. given the last one was not a success. Of course you need to follow Dr/s advice, but I hope that they get your medications and infections/blood counts, and everything under control before considering a procedure with risks,or that could interfere with the healing time that your body so obviously needs. Bless you, and I pray that you are well very soon!!
  • Thank you, yes I remember you!
    You are right, I'm going to my PCP in an hour, not sure if he will be able to help or not, but I don't want to play doctor either. My left leg/foot nerve pain has gotten more intense. I'm not even sure anymore as to when. Was it after esi, myelogram, or since the macrobid (antibiotics) ??? I have been only taking 300-600 mg of the neurontin per day, instead of the prescribed 900 mg. I was or am trying to blame the neurontin... just too many meds, I had surgery because I didn't want to live tied to a pill chart and now my life revolves around it! Ironic! I need to get off some of these meds,.I actually asked pm doc to cut my oxy from 30 to 15 mg every 4 hours,.as I had been able to cut back from 180 to 120 mg per day. He said NOT yet, I also begged him to release me to work with restricted hours.... 4 .....again, NO. I know he Is right, I guess I'm trying to will myself normal, Fake it to you feel it, but it wont work with this....
    I haven't even driven since my surgery yet! over 3 months!

    I have no idea what the pain mgmt doc wants to discuss, but at least he is not forging ahead with the ESI at that level, I guess thats good....

    Hope everyone is doing well, Im still in my own pity party mode...... looking for and praying for and hoping for a blessing of relief or hope!
  • hugs virginia , yove got so much going on here , but your getting it sorted , bit by bit and yes the 2 steps foreward , one back , but think , youve got the drs working on the probs and i know its frustrating, lets hope bit by bit each prob is sorted.
    you will get there !!
    yeah , i no you think if your released to work , you think yuo may feel somewhat normal , buy hey, with what you got going on , it really needs resolving, before you even think about stsarting work, you dont want any more set backs .
    when your UTI has settled , you can get back to working on the bladder rehab, yes.
    hopefully soon, thses issues will start to resolve and the others probs , some treatment options
    take care virginia, my thoughts are with you , hang in there, as frustrating as it is , it will get better
    hugs flower

  • Virginia I am with you on the neurontin. I was taking 3600 mg a day and took a bad fall. I went straight down off the end of a step and landed on my palm with my arm straight so I fractured my elbow. Now I have other issues that I am sure are coming from that.

    My neurologist took me off neurontin 2 days after the fall.

    I hope that you can get the rest straightened out. It's so hard when you don't know which doctor to believe. I'm facing the same issue right now.
  • Your blood count, UTI, medications, symptoms, etc. should all be taken very seriously and not swept under the carpet at all. These can be very serious. I'm not trying to put a fear into you or anyone else, just a reminder that infections and UTIs can sometimes take bad turns and need proper attention. I am praying that you recover soon Virginia. I hope you let us know what the Dr. says.
  • Thanks for hugs. I needed it!

  • I'M SO SORRY to read your reply and hear about your fall and elbow. I pray you are feeling better.
    I did NOT take ANY nuerontin today and survived! My left foot has been on fire & electricity shooting through my leg.

    My PCP gave me an hour and spent half of the time telling me to get off the oxy, he wrote a 5 week wean off therapy for me. This is in direct conflict with my pain contract.....feel like a yo-yo! I do want / need to try and understand what pain I'm feeling and what I've become hyper-sensitive to. This is exactly why I asked pm doc to reduce my dosage. PCP also advised me to NOT do any more tests, shots or epidurals or anything. He kept telling me to basically forget the surgery it didn't work and move on ....easy for him to say, cause moving hurts me!

    Wow, didn't mean to vent again. Sorry.

    Kris, hang in there! All my positive energy is coming your way!
    Thanks for your reply.
  • Yes, you are right! These uti's are wicked! Which is why I went to my pcp today. I'm seeing the bladder specialist tomorrow, she was going to consult with my urologist. I can't believe at 42 I have so many doctors! Wish I could spend a week with Dr. House (from tv - he'd get me cured, in an hour!)
    No seriously, you are right, I know this is serious and I'm very concerned, I do feel like dots are NOT being connected for me....

    Thanks again for your reply Robin. Hope you are well.
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