Suzy-Q, sorry I haven't responded sooner. Yes the neurontin does help me tremendously. I don't think I could get around very well without it. Have you had your 2nd opinion yet? I have been on the boards looking at other posts and haven't had the umph to write. Like many others, I am not always up to par. This pain sometimes just takes the wind out of my energy.
I'm 40 and at times feel like 90. I would ask why do I have to go through this, but I don't like doing that as I know it could always be worse. I will have my Dr. appt. next month to go over the results of Ct. Hopefully, not another fusion. That was the worst pain ever. Man I have had c-section, hysterectomy, Tubal, carpal tunnel release, Gall bladder removed Lami and then Fusion, "Child Birth" LOL and I must say, the Fusion was the WORST!!
Thanks for listening, it's nice to be able to chat with people that know all to well what its like. Hope your having a better day! Bernie
Hi Bernie -
How nice of you to look me up! I'm just getting home from a romp in the city. And a pretty small city it is but I'm a small town girl so it doesn't have to be very big. I had to use my cane and I do know so well what you mean by feeling 90 ys old. I get out of the car like I am just ancient. Heck, we met friends and had dinner at Pizza Hut and getting out of the chair was torture. My friend tells me what I need is a Nana Launcher!
Once I am up and moving I can limp along at a good clip but the transition from sitting to walking is rough. I have been fortunate not to have severe nerve pain. I'm very glad you have the neurontin - what in the world did people do before modern medicine?
My 2nd opinion isn't until April 25. The epi shot I had about 10 days ago gave me relief for 3 1/2 days. Today I have all of my old pain and symptoms back and in full force. My second shot is set for April 13th. Oh well, maybe I'll have better luck next time.
Me too with the surgeries: varicose vein, gall bladder, biopsy, tubal ... fusion the worst. Now I seem to be simply falling apart. I have not even told my husband but the bunion on my left foot started a month ago to give me serious pain for the first time ever. Another inherited problem, I have bunions on both feet despite that I have never worn tight shoes or heels. I wear good wide foodwear only. And until a month ago I have never had the first pain. Now it is a very intermittent ache but it is getting more frequent and more painful every day. What next, eh? I sort of feel like my husband will be thinking I'm about ready for the glue factory when he hears this latest news of my rapid decline. I'm trying to ignore it in the hopes that it will just go away - I really haven't the time or energy for another source of constant pain! Maybe I could have that fixed at the same time if I end up having a revision surgery? Just kidding. Heaven forbid. So nice to talk with you Bernie - Swimming along, Suzy-Q
Suzy, I am sorry to hear the epi. is fading off. I know you were hopeful that this was it for a while...I am sorry. I do hope the next one works just a little bit longer. And now the bunion...is it not enough pain already ?
I went to the Urologist for my consult that my surgeon requested prior to surgery. He agreed to set up an CMG bladder test in 2 weeks and the fusion is still on for the 19th. The Urologist said that the bladder problem is likely to be from the nerve damage...but after the fusion, I need to see a neurologist to make sure I don't have MS...evidently the symptoms are the same as the ones I have now.
Good luck at your 2nd opinion. It will be after my fusion, so if I don't see you update at that time I wish you all the luck and wisdom thay you will need.
So good to hear from you. Well, I'm awful glad your surgery has not been delayed again. I just groaned in sympathy when I read that it was to be put off pending more medical stuff. I keep it to myself but I am constantly being 'advised' by friend, family and co-workers to get another opinion, get two opinions, get a 3rd and a 4th opinion ...... I want to scream but I don't because their only crime is being ... healthy - they just have no idea how hard it is to work full time, do PT 5 days a week, manage a home, deal with pain and debility AND try to transfer records, pick up films, fax this here, call them back, go get a new MRI, wait, wait, wait - It is just too many balls to try to keep in the air. My sister wants me to make apts with 4 doctors right now whether I need or want to see them or not. But not me - I'll mess it up and be in Boston when I have an apt in Manchester NH! One at a time for me, please.
I can see why the docs wanted to investigate your bladder issues. MS is a tricky diagnosis to make so they are right to be cautious. Mind telling me what a CMG is? Well, I'll let you go and hope to talk with you later. I'm disappointed about the epi but not surprised. Maybe it is good information that it did knock out my left bum pain even if only for a few days? And I have shot #2 to look forward to - Whoopie! Suzy-Q
Hey Suzy-I hope these shots aren't too unbearable for you. A CMG is where they insert a cath. and then they fill the bladder with fluid and I have to tell them when i feel the urge to pee...then when I feel a real full bladder etc. I am not sure how, but it will tell the Dr. if the bladder leakage is from the nerves at the l5-s1 area or if it is something else. (Actually, I don't know if it will tell them exactly what is causing it or if it just shows them what it is not).
Anyway, I wll let you know how it all goes and let us know as you have more going on.
Evening All -
No, Lorie, the epi shots aren't too terrible for me. I'm no more a fan of needles than the next person but I don't fear them overly. I do pass out sometimes with needles but that is a kind of weird vaso-constriction thing that started after my one major illness some years back. In short, I was in hospital for 2 weeks and very, very sick. I was full of IV lines and they kept failing. My veins just shrunk up to nothing. It was an ordeal and then some to get new lines started. Now, I just never know if I am going to be fine or fade away. Adds some excitement that no one usually aprreciates!
Well, a CMG. Thanks for the info. Tonight I am quite uncomfortable so I'm going to print out a paper on BMP and read it in bed. There is some info in this paper on BMP and immuno-compromised subjects. I'll let you know what I learn. Till tomorrow then - Suzy-Q
I'm not laughing at the great pain that we all share but, you had me busting at the seams! "Glue Factory" huh..lol. and "Nana Launcher" omg rotf!!!
I feel so much better right know just reading that and laughing. It seems really laughing does not come along anymore like it should if you know what I mean.
I do know all to well about the transition from sitting to standing, it is painful. That stinks about the epidurals not lasting more than they did for you. Mine only lasted about the same as yours, maybe a few days and back to square one. The Bunions sound painful, that is something that I don't have, thank goodness.
Well sorry that your having a ruff day. Heres hoping that tomorrow will be better for you. Take care and nice talking to you!!
Hi Lori, I'm Bernie nice to meet you..(hand shake) lol
Here's hoping that you have a better day too.
Hey Bernei-nice to meet you too. I am 43 and know what you mean when you say sometimes you feel like you're 90. I tell my surgeon that each time I see him and he is such a dear. He always replies that I sure don't look it and we both laugh as he helps me get up out of the chair. Oh what a sight I must be sometimes Anyway, it is nice to meet you and I will keep looking for your posts.
Suzy-now aren't you sweet...adding my research into yours. I'd appreciated anything you happen to come across. I did find a few things that mentioned BMP has not been tested on Autoimmune patients, but I haven't found anything that shows how these patients who have since had fusions actually done.
Thanks again and I hope we all get some decent sleep tonight. It's been several nights now that I have gotten very little sleep. I am going to try to get some sleep now. Talk to ya'all tomorrow.
Omg Lori between you and Suzy-Q you have both now made me laugh so hard i can't stand it..
As I was reading what you wrote: "He always replies that I sure don't look it and we both laugh as he helps me get up out of the chair" ....... My Dr. is just the sweetest as well, always says how cute I am, don't look my age, helps me out of chair to,ect ect ect....
Okay, So image this...I go and pick up my reports to take to another Dr. and of course I open and read them..... Well, I found out just how cute I really was and how old I really looked....lol His reporst say's I looked warn out, tired and older than my stated age, ect ect ect....lol
If I wasn't laughing so hard at what a liar he was, I would have went back and choked him.
Hey Bernie, Lorie and to All -
Well, thank goodness we can still laugh with each other, eh? This back pain business is a stinking riot sometimes. I work really hard at having the amusing quip on the end of my tongue. It is attention-getting, to say the least, for me to be walking around at work with a cane - again. So many people know about my first surgery and are horrified when they see me. I try to keep it light and funny so they don't start writing my epitath and planning my 'good bye' party. But my jokes sometimes go awry. Last Friday - no kidding - a gal who has seen me almost daily stopped and asked "what in the world happened to you?" I didn't think she could possible not know it was my back so for yucks I told her I'd been hit by a bus. Twenty minutes later my boss and her secretary come tearing into a meeting to demand that I go to the hospital ASAP! It was a bit tricky and not nearly so funny as I might have hoped it would be.
Well, I continue to read up on BMP. So far I find that immuno-compromised individuals are the target group for FDA approved use of rh-BMP-7 in posterolateral lumbar revision fusion surgeries. But I do not have a clear sense of what special concerns or risks immuno-compromised people may face wrt BMP. I'm not done reading though so I'll keep you'all posted. I received my packet today from my 2nd opinion guy. There was a front page warning that they would not prescribe pain meds unless and until a surgery date was set. Then, there are four pages of questions for me to go through. It'll take me a month to fill it all in and that's fine because I've got a month to wait for the appointment.
Well, here's to you and hoping you have a good night's sleep. Suzy-Q