Chronic pain and spinal fusion

Posted by lynn12 @lynn12, Aug 16, 2018

Hi
I am wondering if there is anyone out there has experienced what I am dealing with? In 2006 I had a spinal fusion from T2 through L4. Actually the fusion failed and after one year had to be repeated, this time using a bone morphosizing protein that ensured fusion. Like most who have endured a surgery like this I am left with chronic pain. I have through the years also developed quite a dowagers hump. The surgeon explained that my problem went up so high that she actually bent the rod a bit forward during surgery otherwise noting that I may become off balance. As the years have gone by this hump is looking more and more pronounced. I absolutely hate it and feel so ugly, can anything safely be done or does it involve another dangerous surgical procedure? As you can imagine the thought of more surgery is frightening to me. What complicates matters is I am on Warfarin (blood thinner) due to aortic valve repelacement in 2001. Any surgery for me is always more complicated.

Grandmar Thats what Im going to do if he wont I will keep looking have a good day

REPLY

Hi All, I'm a newby to the forum. I had a fusion in 2014, and although it helped with one really big problem, it didn't help with a lot of other pain issues. I am very frustrated with my situation, although I'm sure there are some who have it a lot harder than I. I have wondered if the fusion hasn't created a muscular problem…seems as though the muscles in my lower back (fusion area) are always in ball and won't let go. Has anyone else experienced this? I am also (of course) on pain meds and I am just at the end of my rope with THAT whole "ball and chain". I feel very trapped with the whole mess! I would love to get rid of the pain meds and I think I'm going to taper and see if I don't feel better. I've heard that plenty of the pain is cause by the pain meds ( or caused by the reduction of meds, and the nerves coming back to life), but once you've reduced or stopped, the pain is not as bad as when one was ON the pain meds. Anyway, I just wanted to write a little something to encourage myself to talk about it, which is another problem I have…I don't talk about any of it, and I really should! It is hard to talk about it with people who don't KNOW about it, so, here I am! Ha! I am looking forward to returning to this forum and meeting more people who understand what it's like to struggle with this mess! Take care, 😀

REPLY

Hopekeeper I am not able to have a much needed fusion due to my weight and MAC/MAI, but you might want to check on medical marijuana for your situation. I don’t know the rules/laws in your state but it is a very helpful alternative to pain meds. Some choices are topical and might relieve your muscle pain. Good luck.

REPLY
@hopekeeper

Hi All, I'm a newby to the forum. I had a fusion in 2014, and although it helped with one really big problem, it didn't help with a lot of other pain issues. I am very frustrated with my situation, although I'm sure there are some who have it a lot harder than I. I have wondered if the fusion hasn't created a muscular problem…seems as though the muscles in my lower back (fusion area) are always in ball and won't let go. Has anyone else experienced this? I am also (of course) on pain meds and I am just at the end of my rope with THAT whole "ball and chain". I feel very trapped with the whole mess! I would love to get rid of the pain meds and I think I'm going to taper and see if I don't feel better. I've heard that plenty of the pain is cause by the pain meds ( or caused by the reduction of meds, and the nerves coming back to life), but once you've reduced or stopped, the pain is not as bad as when one was ON the pain meds. Anyway, I just wanted to write a little something to encourage myself to talk about it, which is another problem I have…I don't talk about any of it, and I really should! It is hard to talk about it with people who don't KNOW about it, so, here I am! Ha! I am looking forward to returning to this forum and meeting more people who understand what it's like to struggle with this mess! Take care, 😀

Jump to this post

@hopekeeper, what a great introduction, welcome to Connect. I have entirely different reasons for my chronic pain, but have also had major joint surgeries and continued pain. I also talk about it sparingly. I know my family and friends care, but I am also aware of the "zoned out" look you can sometimes get from them because they either can't understand or are possibly tired of hearing it. It is a fine line to walk isn't it? Do you talk about it because it makes you feel better to get it out, even if it risks people "getting tired" of hearing it (whether they admit it or not)?

You have found a great place where members will not get tired of listening and where members do understand what you are going through. I look forward to seeing you participate in the discussions more!

REPLY
@JustinMcClanahan

@hopekeeper, what a great introduction, welcome to Connect. I have entirely different reasons for my chronic pain, but have also had major joint surgeries and continued pain. I also talk about it sparingly. I know my family and friends care, but I am also aware of the "zoned out" look you can sometimes get from them because they either can't understand or are possibly tired of hearing it. It is a fine line to walk isn't it? Do you talk about it because it makes you feel better to get it out, even if it risks people "getting tired" of hearing it (whether they admit it or not)?

You have found a great place where members will not get tired of listening and where members do understand what you are going through. I look forward to seeing you participate in the discussions more!

Jump to this post

Hello @hopekeeper

Yes, as @JustinMcClanahan said, at Connect you will find Members who do not "zone-out." So keep posting and keep venting.

REPLY
@hopekeeper

Hi All, I'm a newby to the forum. I had a fusion in 2014, and although it helped with one really big problem, it didn't help with a lot of other pain issues. I am very frustrated with my situation, although I'm sure there are some who have it a lot harder than I. I have wondered if the fusion hasn't created a muscular problem…seems as though the muscles in my lower back (fusion area) are always in ball and won't let go. Has anyone else experienced this? I am also (of course) on pain meds and I am just at the end of my rope with THAT whole "ball and chain". I feel very trapped with the whole mess! I would love to get rid of the pain meds and I think I'm going to taper and see if I don't feel better. I've heard that plenty of the pain is cause by the pain meds ( or caused by the reduction of meds, and the nerves coming back to life), but once you've reduced or stopped, the pain is not as bad as when one was ON the pain meds. Anyway, I just wanted to write a little something to encourage myself to talk about it, which is another problem I have…I don't talk about any of it, and I really should! It is hard to talk about it with people who don't KNOW about it, so, here I am! Ha! I am looking forward to returning to this forum and meeting more people who understand what it's like to struggle with this mess! Take care, 😀

Jump to this post

@hopoekeeper
Welcome!
I have not had a fusion as you described, but I am having one on Monday.
I had 2 discs replaced in my cervical spine in February.
When I had the disc replacement, the neurosurgeon informed me that when doing a fusion, the weight of it causes a domino affect and additional surgery on lower discs WILL be needed.
Sadly, this is not available for lumbar surgery.
I have also been told that there could be permanent nerve damage (or temporary), new pain in the thigh, weakening.
The result can suck, but I am willing to take the chance.
Have you attempted to see another doctor to get someone to diagnose what is going on now?
You should!
You never know what can happen over time.
You need to find a doctor who will believe what you say and is willing to work with you to find an answer.
I started to have an issue with my right foot.
When flat, I cannot rotate it and I cannot lift my toes.
My doctor says it presents like a person who has had trama done ot the spine.
I HAVE NOT.
I've taken 3 tests to try to find the answer.
When I took the 2nd test, he found something on the CAT scan that was not mentioned on the report.
He did not know if it was a tumor or cyst.
So, he sent me for an MRI with contrast.
Guess what? This time the person who read the test, found the spot the doctor saw in the previous test.
Thank God it was a cyst.
The point is, he believed my story and was willing to do something about it.
Now, he won't do any surgery on it, yet, because it is in my spinal canal.
It is very small and he won't watch it.
If the surgery does not work, I will be sent to another doctor for more testing.
In addition, the nurse practitioner suggest a brain scan. Brain? I wonder if they'll find it. lol
Anyway, don't give up.
Be your own advocate and find someone who can help you or at least is willing to give it a try!

Here's to a pain free day!
Ronnie

REPLY
@JustinMcClanahan

@hopekeeper, what a great introduction, welcome to Connect. I have entirely different reasons for my chronic pain, but have also had major joint surgeries and continued pain. I also talk about it sparingly. I know my family and friends care, but I am also aware of the "zoned out" look you can sometimes get from them because they either can't understand or are possibly tired of hearing it. It is a fine line to walk isn't it? Do you talk about it because it makes you feel better to get it out, even if it risks people "getting tired" of hearing it (whether they admit it or not)?

You have found a great place where members will not get tired of listening and where members do understand what you are going through. I look forward to seeing you participate in the discussions more!

Jump to this post

I totally agree about not talking about my pain to my family. I feel like they don’t want to hear me complain and it doesn’t change my pain level. I simply take my meds and keep to myself. I have found solace here in knowing I can complain if I want and I can ask questions. There’s no judgement here so feel free to be whoever you feel like being. God Bless!

REPLY
@irene5

Hopekeeper I am not able to have a much needed fusion due to my weight and MAC/MAI, but you might want to check on medical marijuana for your situation. I don’t know the rules/laws in your state but it is a very helpful alternative to pain meds. Some choices are topical and might relieve your muscle pain. Good luck.

Jump to this post

Ha! I'm in Colorado!!! You'd think I would have already done that, but no, I'm hesitant!

REPLY
@JustinMcClanahan

@hopekeeper, what a great introduction, welcome to Connect. I have entirely different reasons for my chronic pain, but have also had major joint surgeries and continued pain. I also talk about it sparingly. I know my family and friends care, but I am also aware of the "zoned out" look you can sometimes get from them because they either can't understand or are possibly tired of hearing it. It is a fine line to walk isn't it? Do you talk about it because it makes you feel better to get it out, even if it risks people "getting tired" of hearing it (whether they admit it or not)?

You have found a great place where members will not get tired of listening and where members do understand what you are going through. I look forward to seeing you participate in the discussions more!

Jump to this post

Thanks Justin! I don't talk about it for several reasons…yes, the zoned out response, which I completely understand. Another reason is that it makes me feel weak. I have always been VERY strong, frightening for some (ha!), but I can tell the difference and I actually find it embarrassing, as ridiculous and vain as that sounds. My shortcoming is really that I KNOW some things that I can do, but I've lost my moxie and can't figure out where I put it! Low mood from all of this going on for so long has really hurt me (and yes, I am on a low dose of Zoloft, which is garbage, but I can't seem to get anyone's attention about that either). Geez, I sound very whiney… @grandmar, Agreed, on the problem of getting a good doc to listen…there seems to be a "shut down" if you are on pain meds and needing to discuss pain. Even tho' I am with a pain clinic and don't need anything from a PC, still, there is a bit of a "zone out" from them, as well. I have pretty much shut down, myself, which makes finding this forum a really good thing! I need to get amped up by those who get it, so that maybe I can get a little push to fight for myself. That just sounds so stupid coming from ME!!!! That actually made me chuckle typing it! Thanks @hopeful33250 Will Do!! @kdo0827 I'm with ya! Keeping it to yourself "seems" easier! I'm glad you found this place, too! Feel free to pm me! Thanks for all the support, will be coming back for more to get and give!!!! 😀

REPLY

@hopekeeper
Don't be so hard on yourself!
I know where your moxie went.
It went to the same place most of ours have gone……..Deep in our subconscious.
When we are in constant pain without the FEELING of hope, our desire to push and fight will sometime wain.
It is exhausting to go through what you have.
Ease up on yourself.

Here's to a pain free day….
Ronnie (GRANDMAr)

REPLY
@grandmar

@hopekeeper
Don't be so hard on yourself!
I know where your moxie went.
It went to the same place most of ours have gone……..Deep in our subconscious.
When we are in constant pain without the FEELING of hope, our desire to push and fight will sometime wain.
It is exhausting to go through what you have.
Ease up on yourself.

Here's to a pain free day….
Ronnie (GRANDMAr)

Jump to this post

Awww, thanks @grandmar , appreciate the encouragement!!! And yes, you're correct, that hopelessness can get you! Fortunately, there is always tomorrow…ALWAYS!!!! Hope you have a pain free day, as well!!!

REPLY
@hopekeeper

Awww, thanks @grandmar , appreciate the encouragement!!! And yes, you're correct, that hopelessness can get you! Fortunately, there is always tomorrow…ALWAYS!!!! Hope you have a pain free day, as well!!!

Jump to this post

@hopekeeper
My pleasure.
Glad I can help.
And YEST…..…………THERE IS ALWAYS TOMORROW AND THE HOPE THINGS CAN BE BETTER.

Ronnie (GRANDMAr)

REPLY
@lioness

Grandmar Thats what Im going to do if he wont I will keep looking have a good day

Jump to this post

GrandmaR went to Dr today. Gailb saw a nurse practitioner Theresa I told him I wanted to avoid surgery if possible as we talked he agreed with what Im doing is good except he is sending me to Aqua Therapy 2times a week plus I do chair exercises 2times a week also Thanks guys for your concern I still have pain but he didn't think it was bad enough for surgery I would have had it if he felt it would be helpful. Oh well such is life

REPLY
@lioness

GrandmaR went to Dr today. Gailb saw a nurse practitioner Theresa I told him I wanted to avoid surgery if possible as we talked he agreed with what Im doing is good except he is sending me to Aqua Therapy 2times a week plus I do chair exercises 2times a week also Thanks guys for your concern I still have pain but he didn't think it was bad enough for surgery I would have had it if he felt it would be helpful. Oh well such is life

Jump to this post

I'm so glad that you have some plans now that might help you. Thanks for posting, @lioness!

REPLY
@hopeful33250

I'm so glad that you have some plans now that might help you. Thanks for posting, @lioness!

Jump to this post

@hopeful33250 your welcome all your uplifting words and concerns for us all are helpful.Thanks Linda

REPLY
Please login or register to post a reply.