sunshine221
05-13-2006, 05:33 PM
Some recent postings and my own frustration has prompted these thoughts.
We've had "major surgery" whether ACDF or laminectomy, etc. Most of us in this group its been cervical spine.
1. Any surgery is "major" - all have risks. For the most part we are not electing this surgery, it is for pain relief or to prevent paralysis and other complications of stenosis, etc. Some of us are here due to accidents, others our bodies just are suffering from "wear and tear." The surgen is "touching" our spinal cord/nerves so yes this is serious.
2. Its sometimes hard to convince our friends/loved ones that it is major because we are generally in the hosptial two days or less even though most of our procedures were 3-5 hours long. Sometimes its hard to convince ourselves of this since many of us are back at our computers and possibly even working to some degree in less than a week. Compare to heart procedures with weeks in hospital/bedrest.
3. We will in general never be "the same" - for better or worse. As someone else has said we come to a "new normal." Has anyone out there fully recovered? If so they probably aren't reading these boards anymore. (Yes I want to play tennis and golf, etc. I can skip the roller coasters, but I know some of the rest of you want to enjoy them again.)
4. People are insensitive (perhaps not the right word). They ask how we are doing and we usually say "fine" wether we mean it or not. If we say "not so good" or equiv they probably don't really care anyway. I usually default to "hanging in there" especially in a "down" period so they know I'm not really better but it usually closes the conversation unless they want to know more.
5. Sometimes its the opposite - people think you are "handicapped" because you don't walk right or are wearing a collar, etc. but you feel you are ok. I'm supposed to walk a lot - my assigned parking is about 1/2 block away from my office, the parking attendant saw me "hobbling" and told me I can park in the metered lot next to my office and he won't ticket me. I really don't mind the walk but I wasn't having a good week so I parked closer the next few days anyway.
6. People (ok my husband and relatives) "tell" me to walk properly. They don't fully understand - I"M TRYING!!! I just can't, the body won't do it. (some days, even some minutes I walk better than others)
7. Older relatives (parents, etc.) don't understand that someone in their 20's to 50's can develop a serious problem that needs treatment and perhaps for some period of time we're the one that needs help and can't be there for them.
8. We may look "healthy" so people don't understand when you say "sorry I can't help lift that box, I've had spinal surgery"
I had a few other thoughts that escape me at the moment, I'll add later. Please feel free to share, agree, disagree, etc.
-Gloria
We've had "major surgery" whether ACDF or laminectomy, etc. Most of us in this group its been cervical spine.
1. Any surgery is "major" - all have risks. For the most part we are not electing this surgery, it is for pain relief or to prevent paralysis and other complications of stenosis, etc. Some of us are here due to accidents, others our bodies just are suffering from "wear and tear." The surgen is "touching" our spinal cord/nerves so yes this is serious.
2. Its sometimes hard to convince our friends/loved ones that it is major because we are generally in the hosptial two days or less even though most of our procedures were 3-5 hours long. Sometimes its hard to convince ourselves of this since many of us are back at our computers and possibly even working to some degree in less than a week. Compare to heart procedures with weeks in hospital/bedrest.
3. We will in general never be "the same" - for better or worse. As someone else has said we come to a "new normal." Has anyone out there fully recovered? If so they probably aren't reading these boards anymore. (Yes I want to play tennis and golf, etc. I can skip the roller coasters, but I know some of the rest of you want to enjoy them again.)
4. People are insensitive (perhaps not the right word). They ask how we are doing and we usually say "fine" wether we mean it or not. If we say "not so good" or equiv they probably don't really care anyway. I usually default to "hanging in there" especially in a "down" period so they know I'm not really better but it usually closes the conversation unless they want to know more.
5. Sometimes its the opposite - people think you are "handicapped" because you don't walk right or are wearing a collar, etc. but you feel you are ok. I'm supposed to walk a lot - my assigned parking is about 1/2 block away from my office, the parking attendant saw me "hobbling" and told me I can park in the metered lot next to my office and he won't ticket me. I really don't mind the walk but I wasn't having a good week so I parked closer the next few days anyway.
6. People (ok my husband and relatives) "tell" me to walk properly. They don't fully understand - I"M TRYING!!! I just can't, the body won't do it. (some days, even some minutes I walk better than others)
7. Older relatives (parents, etc.) don't understand that someone in their 20's to 50's can develop a serious problem that needs treatment and perhaps for some period of time we're the one that needs help and can't be there for them.
8. We may look "healthy" so people don't understand when you say "sorry I can't help lift that box, I've had spinal surgery"
I had a few other thoughts that escape me at the moment, I'll add later. Please feel free to share, agree, disagree, etc.
-Gloria
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littlelucky
05-13-2006, 08:11 PM
Hi Sunshine....I am new to the board and still can't find out how to write to you as you seem to have alot of the same symptoms and I am having my posterior laminectomy c-5-6-7 with fusion on May 30th....I also am having gait and balance problems and although I know there is no guarantee the gait will get better I am curious about what you have been told to expect about improvement....I saw my Dr 6 years ago for spinal stenosis...at that time I elected not to do the surgery as I was not in bad shape and did see him every year to moniter how I was doing....I got my very first case of Vertigo about a year ago and thought that my weight and the vertigo was causing some off balance walking....about 5 months ago my left arm started to hurt from top to bottom....seems like a spur compression on the nerve root..My gait also got worse...yes I can walk but also feel like I am off balance and my stride is not normal....I did get a second opinion and he said surgery was a must to prevent any more damage althought it now was considered mild...My arm pain has almost gone...but I am very concerned about the gait problem.I You responded to my question about feeding my cats while in the collar...I also found out there is a thing called the grabber...that you can buy that enables you to pick up..and put things down easily with the Collar on...Hope you can tell me how to write to you...best regards Jeri
jcjwillis
05-14-2006, 10:38 AM
Hi Sunshine
Thanks for your very true feelings about spinal surgery and all of the problems that go along with it. I think you hit the nail on the head.
Thanks for your insights they were very helpful,
Hope you continue to improve!
Thanks for your very true feelings about spinal surgery and all of the problems that go along with it. I think you hit the nail on the head.
Thanks for your insights they were very helpful,
Hope you continue to improve!
feelbad
05-14-2006, 11:06 AM
hey sunshine,just curious,do you currently have one of those handicapped placards or the plates?my life became much easier when it came to having to go anywhere once I got my placard.really.in most states you can even park at any parking meter for free.
i just hate the scrutinous stares I get sometimes from other people when I manage to get out of my car.they just kind of 'look' at you funny like they are trying to figure out if you are "really' disabled or just using some relatives car or placard for your self or something.i am only 45 and I do walk rather awkwardly due to my RSD knee and my leg spasticity,but man people are wierd.
If you don't already have a placard,you really should get one.all you have to do is speak with your doc about the need and he will fill out a paper you bring to the DMV and then a week or two latr,the placard comes in the mail.it really has been a true lifesaver for me as the majority of my worst pain issues is in my leg.
the one big thing tho that I was told by the woman behind the counter when i went to the DMV with that docuaent that day was to not get the actual plates.I was planning on it but once she told me this,I definitely changed my mind about it.she mentioned that when you obtain the actual plates for your vehicle,it kind of 'marks' you as an easy victim or target for those people who like to mug or assault someone?i had never really thought about THAT aspect of it before but after thinking about what she had just told me,I opted just for the placard alone since this can be placed when needed and then taken back down when I am out driving around.Being a disabled woman is not something I reallt want to advertise ya know/
just some thoughts.i do agree totally with your insights too.no one is ever really the same after a major surgery dealing with the spine or the actual cord.My whole world was totally devistated the second they opened up my spinal cord to try and remove a cavernoma from the inside of it.wayyy too much actual spinal cord damage now.and many many secondary spinal cord injuries and syndromes, some excruciating in nature and some just sooo incredibly bizarre to even try to actually describe to anyone so they can really understand just what it all really feels like.but I am 'hangin in there too".marcia
i just hate the scrutinous stares I get sometimes from other people when I manage to get out of my car.they just kind of 'look' at you funny like they are trying to figure out if you are "really' disabled or just using some relatives car or placard for your self or something.i am only 45 and I do walk rather awkwardly due to my RSD knee and my leg spasticity,but man people are wierd.
If you don't already have a placard,you really should get one.all you have to do is speak with your doc about the need and he will fill out a paper you bring to the DMV and then a week or two latr,the placard comes in the mail.it really has been a true lifesaver for me as the majority of my worst pain issues is in my leg.
the one big thing tho that I was told by the woman behind the counter when i went to the DMV with that docuaent that day was to not get the actual plates.I was planning on it but once she told me this,I definitely changed my mind about it.she mentioned that when you obtain the actual plates for your vehicle,it kind of 'marks' you as an easy victim or target for those people who like to mug or assault someone?i had never really thought about THAT aspect of it before but after thinking about what she had just told me,I opted just for the placard alone since this can be placed when needed and then taken back down when I am out driving around.Being a disabled woman is not something I reallt want to advertise ya know/
just some thoughts.i do agree totally with your insights too.no one is ever really the same after a major surgery dealing with the spine or the actual cord.My whole world was totally devistated the second they opened up my spinal cord to try and remove a cavernoma from the inside of it.wayyy too much actual spinal cord damage now.and many many secondary spinal cord injuries and syndromes, some excruciating in nature and some just sooo incredibly bizarre to even try to actually describe to anyone so they can really understand just what it all really feels like.but I am 'hangin in there too".marcia
sunshine221
05-14-2006, 10:55 PM
I've thought about getting the handicapped tag, but I haven't yet. Maybe at my June visit I'll ask.
feelbad
05-16-2006, 10:31 AM
i DO think you will be very glad you did,espescially on those really 'bad' days?It has definitely helped me alot,espescially when the alternative is a huge full parking lot with the closest parking spot feeling like its ten miles away from the freakin door.good luck,Marcia
dennisgb
05-18-2006, 11:46 AM
Some recent postings and my own frustration has prompted these thoughts.
We've had "major surgery" whether ACDF or laminectomy, etc. Most of us in this group its been cervical spine.
3. We will in general never be "the same" - for better or worse. As someone else has said we come to a "new normal." Has anyone out there fully recovered? If so they probably aren't reading these boards anymore. (Yes I want to play tennis and golf, etc. I can skip the roller coasters, but I know some of the rest of you want to enjoy them again.)
-Gloria
I believe that I have fully recovered. The only caviat is, so much pain for so long before the surgery, it is fantastic to feel good again...maybe I can't measure it, but I feel like I did before the pain ever started. I lived with it for 20 years, so it's a blessing to feel this way. It took a year before I
felt "normal".
Many people who have recovered, no longer post here. They have gotten on with there lives.
Dennis
We've had "major surgery" whether ACDF or laminectomy, etc. Most of us in this group its been cervical spine.
3. We will in general never be "the same" - for better or worse. As someone else has said we come to a "new normal." Has anyone out there fully recovered? If so they probably aren't reading these boards anymore. (Yes I want to play tennis and golf, etc. I can skip the roller coasters, but I know some of the rest of you want to enjoy them again.)
-Gloria
I believe that I have fully recovered. The only caviat is, so much pain for so long before the surgery, it is fantastic to feel good again...maybe I can't measure it, but I feel like I did before the pain ever started. I lived with it for 20 years, so it's a blessing to feel this way. It took a year before I
felt "normal".
Many people who have recovered, no longer post here. They have gotten on with there lives.
Dennis
mb100
05-18-2006, 06:16 PM
Gloria,
You've said alot of things that I'm sure the rest of us think, but are afraid to say. I relate to all of it.
Going back to doing the things that endanger our necks now is just juvenile, "I'll do whatever I want" stuff.
Not me, I have a new normal, and like Clint Eastwood says "you've got to know your limitations". I'll live like that and do the best with what I have.
It sounds like someone in your life is being pretty insensitive, ask them if they think that it's helping?
Just a few rambling thoughts
Mike
You've said alot of things that I'm sure the rest of us think, but are afraid to say. I relate to all of it.
Going back to doing the things that endanger our necks now is just juvenile, "I'll do whatever I want" stuff.
Not me, I have a new normal, and like Clint Eastwood says "you've got to know your limitations". I'll live like that and do the best with what I have.
It sounds like someone in your life is being pretty insensitive, ask them if they think that it's helping?
Just a few rambling thoughts
Mike
mb100
05-18-2006, 06:19 PM
And get that placard, you wont be sorry
M
M
ThoreauFan
05-18-2006, 08:13 PM
I had a few other thoughts that escape me at the moment, I'll add later. Please feel free to share, agree, disagree, etc.
-Gloria
I've pretty much lived a lifetime of what you have described above.
I haven't been "normal" since I was hospitalized and diagnosed with a chronic, life-long-health-disorder at age 2. Since that time, I have accumulated an embarassingly large medical file. Legally speaking, I have several disabilities, none of which would likely be visibly apparent to someone else. My fused neck will probably be the absolute last part of my body that I will worry about moving forward.
Quite simply, I stopped discussing my health with most other people.
People do not understand and will not understand. Why should they?
Even people who have been through the same procedure have varying experiences.
There is something worse, BTW. And that would be people not wanting to see you become better. People not wanting you to be able to play tennis again. People not wanting to see you pain free. People not wanting to see you ride or, more properly, in your case, not ride roller coasters.
It's bad enough when people can't understand your illness. But the one thing worse is when people resent your wellness. And that may be why you don't see many "full recoveries" on these boards. :angel:
-Gloria
I've pretty much lived a lifetime of what you have described above.
I haven't been "normal" since I was hospitalized and diagnosed with a chronic, life-long-health-disorder at age 2. Since that time, I have accumulated an embarassingly large medical file. Legally speaking, I have several disabilities, none of which would likely be visibly apparent to someone else. My fused neck will probably be the absolute last part of my body that I will worry about moving forward.
Quite simply, I stopped discussing my health with most other people.
People do not understand and will not understand. Why should they?
Even people who have been through the same procedure have varying experiences.
There is something worse, BTW. And that would be people not wanting to see you become better. People not wanting you to be able to play tennis again. People not wanting to see you pain free. People not wanting to see you ride or, more properly, in your case, not ride roller coasters.
It's bad enough when people can't understand your illness. But the one thing worse is when people resent your wellness. And that may be why you don't see many "full recoveries" on these boards. :angel: