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View Full Version : almost 1 year post surgery .. Is this pain normal ??



leannebr
10-19-2011, 12:02 AM
Is it normal to have pain that seems to be getting worse at almost 1 year out ? Is it just nerves ? The pain I have stings and burns all around the hardware, and feels heavy and there is a deep aching in this area. The only relief I have is when I lay on my side and dont move. In fact I'm best if I just dont move. Certain movements ( I'm not sure if it's my neck or spine ) trigger a hotflash type feeling and I just drip with sweat and feel like I'm burning up without a fever. I still am not able to sit back with pressure on my back in a chair. I cant really find a position laying down on a couch or sitting in any chair that is comfortable.
I have tried many many medications, Tramadol, Gabapentin, Lyrica, muscle relaxers, Tylonal, all of them, and have been on oxycontin almost a year. Nothing helps with this type of pain. I have alot of neck pain as well. There is an area at the top of my rods that has a sharp bone or something sharp there that I can feel with my fingers and it just irritates and hurts alot inside.
Also when I lay down flat on my back ( painful but I do this to use a neck traction unit ), I feel alot of click, click, click like the rods or my bones are separating from something. Its an awful gross feeling but it feels like its going back to how it should be, like something has been grimped up and is releasing (?) this happens every time I lay down flat.

JDM555
10-19-2011, 01:15 AM
If your back hurts from movement and you're hearing clicks, I'd be concerned with how well you're fused. Did your surgeon have you get a CT scan to check your fusion? And if you have something that is sharp and might be a bone, possibly a bone spur from part of your fusion or a protruding screw/rod? It should show through a CT scan as well. Do medications such as anti-inflammatories help a little, not relieve you 100%, but just give some relief when moving around?

leannebr
10-19-2011, 10:48 AM
I had 1 CT in March and 3 CTs April 20th at a little over 5 mos post surgery, and I think fusion was at 50% or so. Havent had anymore with all that radiation. Suppose Id have to wait a year or more ( ?) to have another one. Was prescribed a bone growth stimulator and cant wear it as it makes the pain alot worse as soon as I turn it on I get sharp pain.

Have stayed away from NSAIDS because of the problems they can cause with fusion. But have tried them over time and they dont help with the stinging and burning. I get headaches when I take them.

Marina63
10-19-2011, 11:19 AM
I'm only three and a half months post but I certainly know what you mean about the stinging and burning. For me, the only relief is sitting in a chair with a high, straight back or lying down. Fortunately the sensation isn't always there.

JDM555
10-19-2011, 02:55 PM
I had 1 CT in March and 3 CTs April 20th at a little over 5 mos post surgery, and I think fusion was at 50% or so. Havent had anymore with all that radiation. Suppose Id have to wait a year or more ( ?) to have another one. Was prescribed a bone growth stimulator and cant wear it as it makes the pain alot worse as soon as I turn it on I get sharp pain.

Have stayed away from NSAIDS because of the problems they can cause with fusion. But have tried them over time and they dont help with the stinging and burning. I get headaches when I take them.

4 CT's within 1-2 months? Why would your surgeon ask you to get that many CT scans that early after surgery? That is a lot of radiation. If he said 50% and prescribed a bone growth stimulator, then he is most likely worried that you aren't fusing quickly or properly, and he wants to add a stimulator as insurance you get fused. I've read up it works best right after surgery, not months/years after. But it should help. I've never heard of a bone stimulator causing sharp pain though.

From my experience, increasing pain resulting from movement is from my lack of fusion at 2 levels. I get sharp pains when I bend or move a certain way, and it's very stiff/sensitive in my lumbar spine. But I also have another couple of issues, so it's not all coming from 1 specific issue. I'd really try to wear the bone stimulator and wait till you can get another CT scan, which I'd wait for a few more months from all the radiation you've had, and then see what's going on. Tell your surgeon to check the previous CT's and make sure everything is fine, and if he tries to cover up and say it is, when you're in pain 1 year post-op, then ask him for copies of it on CD's and get another surgeons opinion regarding it for peace of mind.

JenniferG
10-19-2011, 03:46 PM
I am sorry to hear things have not improved for you Leanne. Just wanted you to know I still come here looking for some good news from you. Wish you could find a good surgeon who can give you some answers. It's terrible that you have to fight for help and it's not forthcoming - yet.

leannebr
10-20-2011, 02:48 PM
I havent found answers with my surgeon having multiple visits there and the CTs. I havent been able to find a surgeon willing to take over and continue care. I saw one recently who did an x-ray and said he will require a referral from my surgeon to continue care.
My surgeons office is saying I need to have another x-ray with them ( just had one with the surgeon I just saw who needs the referral ). I dont need another x-ray with my surgeon, and dont need or want anymore radiation at this point. I have copies of my CT's from April but would they really be helpful being that old ?
My surgeons office said I need to come in and it sounds like he wont do a referral if I dont. The last time I tried to make an appointment with him a few months ago I was told I couldnt see the Dr, I had to go to his pain specialist again, who in the past wouldnt treat the pain in my surgery area. Said my surgery area and my symptoms were just too complicated and offered an epidural in my low back (?) but couldnt help with the thoracic pain.
They said my surgeon will approve seeing me now... But I really dont wish to go back.
I can't be the only one who hasnt found answers with their surgeon and wants to look for help somewhere else.
The bone growth stimulator, wish so much I could wear it. Last time I put it on I got a severe sharp jolt of pain. The rep for it said he has no explaination, its not common. Said I must have sensative nerves. Offered a new one and agreed to try it but havent heard back from them in over a week. At 1 year after surgery dont even know if it will help at this point. Dont even know where my fusion is at, cant have anymore CT's.

I will take your advice and ask my surgeons office if he will take another look at my April CT's. Any advice and experiences is appreciated.
Jennifer G, thanks for thinking of me.

JDM555
10-20-2011, 05:04 PM
I havent found answers with my surgeon having multiple visits there and the CTs. I havent been able to find a surgeon willing to take over and continue care. I saw one recently who did an x-ray and said he will require a referral from my surgeon to continue care.
My surgeons office is saying I need to have another x-ray with them ( just had one with the surgeon I just saw who needs the referral ). I dont need another x-ray with my surgeon, and dont need or want anymore radiation at this point. I have copies of my CT's from April but would they really be helpful being that old ?
My surgeons office said I need to come in and it sounds like he wont do a referral if I dont. The last time I tried to make an appointment with him a few months ago I was told I couldnt see the Dr, I had to go to his pain specialist again, who in the past wouldnt treat the pain in my surgery area. Said my surgery area and my symptoms were just too complicated and offered an epidural in my low back (?) but couldnt help with the thoracic pain.
They said my surgeon will approve seeing me now... But I really dont wish to go back.
I can't be the only one who hasnt found answers with their surgeon and wants to look for help somewhere else.
The bone growth stimulator, wish so much I could wear it. Last time I put it on I got a severe sharp jolt of pain. The rep for it said he has no explaination, its not common. Said I must have sensative nerves. Offered a new one and agreed to try it but havent heard back from them in over a week. At 1 year after surgery dont even know if it will help at this point. Dont even know where my fusion is at, cant have anymore CT's.

I will take your advice and ask my surgeons office if he will take another look at my April CT's. Any advice and experiences is appreciated.
Jennifer G, thanks for thinking of me.


I'm sorry to hear that. But honestly, I would go online, and search for spine surgeons near you, just find anyone that can offer some advice as a 2nd opinion. If you have copies, I'm assuming you mean you have it on CD correct? Make copies and even send to surgeons that are long distance, do what you have to do to find answers regarding your back. When my surgeon gave up and said I don't know where your pain is and to live with it, I didn't just stop there. I went to more surgeons, got more tests, and found out why I'm in pain and after getting many surgical opinions, I picked the right surgeon and the right procedure.

Search for good surgeons on this forum, and contact them for 2nd opinions. Some are $125 such as Dr. Pashman, $200 for Dr. Anand, who sticks to Minimally invasive, but has enough experience to check your CT, and some are upwards of $300 for Dr. Lonner in NY who is a great surgeon and many people on this forum know. Just search around and get opinions, send these copies, some surgeons are kind enough to do opinions to help us, but some are just so busy they ignore you. Don't stop at 1-2 surgeons, keep sending and contacting till you find the answer most surgeons will agree too and then start visiting surgeons to see which one you're comfortable with to fix you up. It's a long procedure and stressful, but living in pain for the rest of your life isn't the right answer. It's worth it.

mabeckoff
10-20-2011, 06:08 PM
As both John and I have done, you need to find a new surgeon. One that will help you. You cannot continue as you are

debbei
10-20-2011, 06:30 PM
all that pain doesn't sound normal to me. I think it's pretty normal to have some ups and downs at one year post-op, but not all downs.

I hope you can find someone else wh will help you. ((Hugs))

leannebr
10-20-2011, 06:56 PM
I actually have been to 2 other surgeons, one in March who did a CT and said it was too early to tell anything except fusion was only at 50%, very young dr, 6 years experience and said to wait a year and maybe consider removal at some point. But I could tell he wasnt interested in helping me, kept saying I should see a surgeon with more experience. So I did. I saw a surgeon here with 32 yrs in. He said he used to be my surgeons "partner" and for a while teacher. I knew then that he wouldnt help me. He told me he would not have done surgery in my case, and anymore would be immoral and then said to move forward now, and twice he said with a smile, " dont get caught in the quick-sand ". (?) Told me to take whatever med worked at this point for pain but he himself would not prescribe. Said if you come back to see me in 3, 5, years I will give you 10 minutes rather than a lengthy appointment like I gave you today. He didnt want to help, I could tell. At that time I saw him I was experiencing extreme vertigo and both him and his nurse had to grab me and hold me to keep me from falling when I got up off the table at my exam. I was covered in sweat ( have these sweats I mentioned ) and he said, "Oh my you ARE all sweaty.." That was it. requested his report because he never really answered any questions. He didnt do a report for 6 weeks. When I got it, it said he couldnt really comment on fusion, the sweats, really anything, and said she could see an infectious disease Dr. but wasnt really sure if that would be beneficial.
Recently I saw another surgeon here, with so much hope, brought my CT disc, all x-rays, reports etc. They did an x-ray, Dr came in and said I cant continue care without a referral from your surgeon. He said we dont do surgery like this as he looked at my x-ray. Now I am trying to get that referral from my surgeon but his office keeps calling saying I need to come back to him for an x-ray and that, now he will approve seeing me. Not going back. I also phoned 2 other surgeons who are on the SRS list here and they said they have protocol they wont see anyone after this surgery unless its been 3 years, and even then they generally will refer you back to your surgeon.
Keep searching ???? My insurance doesnt cover out of state. Should I start calling these Drs you mention in other states, they might help me ? So far I havent found any here willing to do that.

JDM555
10-20-2011, 07:07 PM
I'm in CA, so there are a ton of orthopedic surgeons to talk to and see. I could of had my revision almost anywhere. UCSF, UCI, Private Practice, Stanford again, etc. I guess you're just having bad luck with your surgeons. I've dealt with a lot of surgeons that just don't want to help, or just don't know how to help. If your insurance won't cover out of state, I don't suggest you fly around and meet up with these surgeons, I suggest you try calling them or emailing them for 2nd opinions. You have to state it's a second opinion so they know it's just their opinion you're after, and not full on care. Once they know that, they might ask for money, like I said, but not all surgeons ask for money, some are just kind enough to donate their time/opinion.

With you, it'll be more difficult because you only have 1 CD of your CT scan, I was lucky enough to have my brother put up all my X-Rays and CT scans in video format online, so I can email and the surgeons can check it out instead of having to send copies. Most of the famous surgeons such as Dr. Lenke, Dr. Boachie, Dr. Lonner, etc. most likely will be very hard to get a hold of. I'll PM you with some surgeons I think you should contact for some help.

mabeckoff
10-20-2011, 07:08 PM
What state do you live in?

golfnut
10-20-2011, 08:14 PM
Leanne,
I feel so bad that you are having such a rough time. To be perfectly honest, all of your pain just doesn't sound right to me for being a year post-op. Maybe you could appeal to Linda for help in getting a new surgeon in your state that your insurance would cover. I would think that there are people who get revision surgery who don't go back to their original surgeon. (Melissa comes to mind)

JenniferG
10-20-2011, 10:58 PM
It's shocking to read your history Leanne. The lack of support from the surgeons you've seen is quite disgraceful. I wish I could get you to my surgeon here in Australia. <sigh>

leannebr
10-21-2011, 07:33 PM
I have an idea what's happening...:(

golfnut
10-22-2011, 06:00 AM
Leanne,
I just went back and read most of your thread starters since your surgery. No one should be going through what you have gone through with this surgery. I hope and pray you can find a surgeon that can help you. My heart goes out to you. You need answers and need them now. This has gone on way too long. Are you limited to Minnesota with your insurance?

rohrer01
10-22-2011, 10:08 AM
There are a lot of spine surgeons in Minnesota. Unfortunately they are almost ALL wrapped up in the same practice at the Twin Cities Spine Center. There is at least one SRS doctor that isn't when I searched last year or so. I haven't looked recently. Being in Wisconsin is terrible, there aren't any "choices". I've heard Iowa is pretty limited, too. I certainly hope you can find someone. Your doctor sounds like mine here in WI. Doesn't give a hoot about pain issues!

leannebr
10-22-2011, 09:11 PM
Just reading your message makes me cry tonight. Maybe just emotional tonight, but it's a good feeling to hear from someone who cares, ya know ? I am almost ready to give up. Its been a long road of which I have tried so hard, so very very hard to stay strong and positive. I just dont know where to turn anymore.
I tried to wear the bone growth stimulator tonight. It hurts so much I had to take it off. I tried to stick it out and leave it on but it just burns, stings sort of itches inside my spine and then my legs get this odd sensation and very weak. I just had to take it off and it frustrates me because I need to wear it incase I it is non union. I had to take an oxycodon for the pain.
Thanks for your help and caring about me. I will keep looking here because its keeping me going.