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ssofalvi 02-09-2011 09:02 PM

Terrified of my L4-L5-S1 spinal fusion
 
Hello,
This is my first time ever posting on a message board... Bear with me!
I am getting a spinal fusion on L4 to S1 and a laminectomy (removing bone spurs) on March 03, 2011. I hurt my back on Feb 23, 2010, herniating two discs at L4-L5 L5-S1 and compressing two (or three) nerve roots in the process. Over the year I have lost sensation along the nerve pathway in my left leg and developed a searing rod of pain down my right leg. In an attempt to alleviate my symptoms I have been forced (by the pain, not my doctors) to take a horrendous amount of pain meds, I have attended physio religiously and increased my core strength by 200% (I am only 110 Lbs to begin with) ... I have still been in excruciating pain for the last year. While I have a great team of professionals, including my amazing Family Doctor, Chiropractor, Physiotherapist, Kinesiologist and Occupational Therapist, I am still quaking in my boots at the prospect of this surgery. I should add that my surgeon is the head of orthopedic surgery for my area and has never had any major complications arise... I am in the best hands. Yet, I can't shake this feeling of impending doom.
I know that this is the only way to get my life back and that the surgery is the first step to my recovery, the beginning of the end of my suffering, but it scares me to death that I will be more immobile, that I will be in more pain. I didn't know pain could get worse.
I am a previously healthy, active and fit 25 year old and now I behave and move like I am elderly and arthritic. Over the last year, despite my best efforts, I have changed. Unfortunately, while all the close people around me have changing for the better, that is moving forward with their lives and plans, as is expected in you mid-late twenties (or I expect), I have been isolated and stagnant; caught in this prison of pain. No one really understands that it hurts to go out for coffe; I don't feel like shopping because it hurts to walk. While I certainly sound like a whiny little girl... I guess I just haven't really expressed any of this before... I just feel... I don't know.

I feel I should clarify that I have not, nor do I always feel this despair. But as my date creeps closer, my anxiety increases. I am usually so positive. I have pushed myself to maintain somewhat of a normal routine, (when I can sleep more than a couple of hours a night) I have stayed positive and motivated, and really I still am. I am just awfully scared too.

Did anyone feel this way before their operation? Did it turn out okay?? Any positive feedback would be so much appreciated. Please. I am aware of the risks and the possibility of being worse rather than better, but I really don't need to be any more afraid or negative.
Thank you for any support you are willing to provide, it is deeply appreciated.

Sincerely,
Sarah

twohands 02-09-2011 09:21 PM

Re: Terrified of my L4-L5-S1 spinal fusion
 
Sarah,

I can soooo relate to the fear you are experiencing! I was scared to death prior to my first surgery. There were many sleepless nights for me. Funny thing is, I'm not even absolutely sure what I was afraid of!

Someone on this board gave me the advice to focus on the pain relief I would get after surgery, and look forward to the surgery as a means to get to a better place. That really did help me some to think of that.

You could also benefit from talking on the phone or in person with others who have had spinal fusions or back surgeries. It may be difficult to find people in your area close to your age, but even if they aren't I have always found it very therapeutic to talk to other spinies who understand the pain and limitations we face. Others just don't seem to get any of our unique challenges.

I'm glad you have a highly-qualified surgeon, and I hope things go really well for you. Please keep in touch and let us know how things go for you!

KristiK1212 02-09-2011 10:25 PM

Re: Terrified of my L4-L5-S1 spinal fusion
 
Hi Sarah
My name is Kristi. I think you might have read my post. Anyways i just wanted to write you and let you know that you are definitely not alone, even though it probably feels that way sometimes. i am only 27 and having a fusion done in March as well, we are a bit unique in that in all the inquiries and research i have done i haven't met anyone in my town that is going through this at such a young age but we do exist. Something that i am finding helpful besides all the things you mentioned is some councelling. I see a therapist who has alot of experience with clients with chronic pain and he is helping me deal with my concerns, fears and most of all the anxiety surrounding my situation. I feel like everything in my life is out of my control right now because it is, like you said "its a prison" But i am realizing that i will have some control over the quality of my recovery. If i do everything right, follow the doc's instructions and when ready work my butt off and get strong again, the odds of making a full recovery get pretty good. Deep breaths and positive thinking go a long way right now. Hang in there.

ssofalvi 02-09-2011 10:57 PM

Re: Terrified of my L4-L5-S1 spinal fusion
 
Hi Kristi,
It was great to get a reply so quickly. You are right, I have been stalking (as another user put it) around these boards for a few days ago now and have come across your post. I really appreciate the sentiment of not being alone. I know that this injury and operation would be horrible at any age, and I can not imagine what you do when you have kids, but being young presents it's own set of challenges. I suppose that all individuals present their own set of challenges. Anyways, I think what I am trying to get out is that I feel like I lost and have already and still am going to lose some of the 'fun' years of my life... I'm sorry if it sounds like I am just complaining, I will stop with the icky feelings.
Like you, I was an aging, but fit athlete before all this happened. I coached gymnastics before I started my full time job out of university and nine months in, I killed my back. Now I am dealing with WSIB just to try and get by and my goals of owning a condo are slowly but surely slipping out of my bank account... I have to admit, the other place I feel like a youngin' is at physio and aquatherapy... I go to an amazing physio facility but I have noticed that anyone my age comes and goes within a few months if not weeks, it is usually the old timers that need longer plans to help them stay on track and deal with issues as they arise... Don't get me wrong, I have definetly bonded with a few of them but it is in a motherly/grandmotherly way rather than as equals? I had to buy a new bathing suit for aquatherapy and most of the time I still wear a t-shirt in the pool... haha.
I have thought about counselling. Honestly my GP and I have been talking about it for months. She has been pushing me to see someone, and I agree I should... there is just part of me that thinks I should be strong enough to deal with it on my own. I feel like my body has failed me, and I don't want to find out that there is something wrong in my head too. I am totally aware that that statement is ludicrous at best, seeing a cousellor does not qualify as evience of weakness... I just feel so helpless already... But you are totally right, I know that talking is the only way to really deal with most things... Haha hence the long long posts on message boards I suppose. It seems kind of pointless since my surgery is in three weeks and then I wouldn't be able to see them for a couple of months? Honestly, what do you think?
One last thing. I totally agree with feeling like I have just lost control. Pre-injury my boyfriend and I were planning on teaching english overseas, or moving to Nova Scotia, something drastic.. he was finishing his MA and I was supporting him through it finacially with my job... Then the injury...Now although he finished in August, we are playing catch up for the months he was studying, and we can't plan a damn thing! I have no idea when I will get better... 2 months? 6 months? I know only time will tell, but that puts a stake in planning, doesn't it?
Anyways, seriously, thanks for posting. I appreciate it. And keep in touch, I would like to know how a fellow fit former athelte deals with the surgery.. Positive thoughts and deep breaths... It is for the best and the beginning of the recovery, not being put in another prison!
Thanks again!
Sarah

ssofalvi 02-09-2011 11:05 PM

Re: Terrified of my L4-L5-S1 spinal fusion
 
[QUOTE=twohands;4681009]Sarah,

I can soooo relate to the fear you are experiencing! I was scared to death prior to my first surgery. There were many sleepless nights for me. Funny thing is, I'm not even absolutely sure what I was afraid of!

Someone on this board gave me the advice to focus on the pain relief I would get after surgery, and look forward to the surgery as a means to get to a better place. That really did help me some to think of that.

You could also benefit from talking on the phone or in person with others who have had spinal fusions or back surgeries. It may be difficult to find people in your area close to your age, but even if they aren't I have always found it very therapeutic to talk to other spinies who understand the pain and limitations we face. Others just don't seem to get any of our unique challenges.

I'm glad you have a highly-qualified surgeon, and I hope things go really well for you. Please keep in touch and let us know how things go for you![/QUOTE]

Hello TwoHands,
I really appreciate the quick reply!! I totally agree that I don't really know what I am afraid of. I can't define the fear... It is just there. It is going under, recovering, being operated on, Urg! everything!!
I really want to focus on the relief, but I can't help thinking about my 40% chance of the pain not going away... I really am trying to stay positive, and honestly most days I succeed but I just found out that March 03 is my day and it is alot sooner than I thought, Which is ssuucchhh a good thing because I can't wait to start recovering, but alot sooner than expected so I am freaked!
I think my soloution to find others to talk to was posting here. I can't get out and sit at a support group... it would just take it out of me to bus there and sit for that long, so I was hopping to get support fromt he relative comfort of my own bed. I like that you refer to us as Spinies! It puts a different feel on it, instead of being an outsider trapped in my pain, I see that others do understand what I am going through and after a year.. well my friends and family have supported me amazingly but they don't get it and honestly I think they need a break! Unfourtunately the worst is yet to come...
Anyways, thanks again! How was your recovery?? Was it better or worse than you thought???
Take care!
Sarah

hausofmouse 02-10-2011 12:09 AM

Re: Terrified of my L4-L5-S1 spinal fusion
 
Hi Sarah,
I did not have a fusion but have had a discectomy and a 2nd discetomy/laminectomy so I cannot completely relate to your situation.
I do know though that everyone's tolerance for pain and their issues are unique.
That said.....Yes I can relate completely to the fear! I was so scared to death that I truly did not know if I would have the nerve (no pun intended) to show up to the hospital the morning of surgery!! There were times I wished I could just shut my eyes forever and not ever have to deal w/ the pain or stress of it all.
It is a very lonely feeling and is frustrating when other people just don't have a clue what you are going thru.
I wish you the best!! I really and truly do!

shelsers75 02-10-2011 12:45 AM

Re: Terrified of my L4-L5-S1 spinal fusion
 
hi sarah, i didnt have surgery im waiting to see the neuro surgeon to see can he help me. im 35 and have had chronic back and leg pain for 7-8 yrs so i know how you feel. its very hard living with the pain every day and like you i have a very supportive family but i feel useless sometimes. its nice to have someone to talk to or just vent when you feel really down. i find i have to fight depression and it gets harder every day when you live in constant pain. i know you want to make plans but wonder how you can when you cant even stand for long with the pain. im like you friends ring to ask to go places but i cant do it anymore, it hurts to much to go for a drink, as for shopping i just am not able. i know its hard being so young and surgery is very frightening but if it gives you back your life it will all be worth it. i always said i would not have surgery but if the neuro surgeon says i need it i will have it now because if it gives me back some of my life il be better off. please feel free to talk or vent anytime i log on everyday, i wish you the best and im sure your surgery will go great. take care shelsers

teteri66 02-10-2011 05:59 AM

Re: Terrified of my L4-L5-S1 spinal fusion
 
Welcome to the board. You've come to the right place to find a caring group of individuals who can definitely relate to your feelings. I'm sorry you are having to deal with all this at a young age.

As far as the fear goes, that is perfectly normal. I managed to make it 57 years without ever having any surgery or being in a hospital except for childbirth. I spent two years reading on forums such as this before finally agreeing to have a surgical procedure, and, like you, my first surgery was a fusion. After reading all the stories online, I was completely prepared for the surgery to be the absolute worst experience of my life. As a result, I came through wondering why I'd wasted all that energy getting so worked up over it.

Yes, the first week is difficult, BUT, how much pain are you in on a daily basis already?? With the surgery, you can believe that there is relief in sight.

Youth is by nature impatient. You have plans, you want to make plans, and having to put them off for a period of time is difficult...but try to take a longer view of your life. In the greater scheme of things, this is but a bump in the road. You will have the surgery. You will recover and you will move on. What you cannot know, is how long this will take, and I can assure you, there is little you can do to rush things along or speed up the process. One of the great lessons of surgery is learning to tune in and listen to your body. Those patients who are able to learn to do this generally have a smoother recovery.

I would like to recommend a CD to you that I found very helpful. I cannot say with complete certainty whether it made my surgery easier, or not. But I can tell you that I had a very difficult 3 level lumbar fusion and spinal reconstruction in June that I breezed through. I was off all pain meds by the 10th day. The only difference between this and my first fusion that I can see was that I was incredibly calm before this surgery...and I can only believe it was due to listening to this CD every night before going to sleep prior to surgery. (I have accused my surgeon of being a magician, and I keep asking him what he did...but he just shrugs his shoulders and denies it.) The cd is Health Journeys: A Meditation to Promote Successful Surgery by Belleruth Naparstek (Jan 1992). I should add that I'm not normally into meditation or listening to relaxation CDs or anything of this type...this was something new I decided to try, thinking it can't hurt, and it just might help.

You can have lots of doubts prior to making the decision to have surgery, but now you need to start believing in yourself and in your "team." You are lucky to have found an experienced and well-qualified surgeon who enjoys an excellent reputation. Now it is time to dig deep and find that well of strength within. At some point you realize you've done all you can do to prepare for surgery, you've picked a good team and now it's time to put your faith in them. Trust that their talents will put you in a position where you can begin to heal and recover. Imagine yourself, a year from now, in a much better place....I wish you all the best.

TT

twohands 02-10-2011 12:02 PM

Re: Terrified of my L4-L5-S1 spinal fusion
 
ssofalvi,

I've been through 5 spine surgeries, and my recoveries have ranged from piece of cake to the worst pain I've ever been in.

My spinal fusion was a piece of cake, whereas a microdiscectomy I had was some of the worst pain I've had. However, I had a complication of a massive hematoma and infection after the microdiscectomy which likely caused the severe pain after that surgery.

It's really hard to say how much pain you'll be in after your surgery as so many factors come into play. I really hope you get an easy recovery!

The worst of the pain tends to be in the first 1-2 weeks after surgery, so if you are in bad pain it should be fairly short lived. Also, I've learned that if you do find yourself in bad pain, you need to contact your surgeon or their office and be adamant that your pain isn't under control. I ended up having to go to the ER a week after one of my surgeries because my surgeon wasn't taking my pain seriously. Severe pain after a surgery may be a sign of a complication which needs to be looked at, so don't ignore it.

guy484 02-10-2011 10:34 PM

Re: Terrified of my L4-L5-S1 spinal fusion
 
When bad things happen in surgery doctors are supposed to report it to the FDA MAUDE within 30 days.

Read the latest:

http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfmaude/detail.cfm?mdrfoi__id=1918239

The Surgeon didn't report it until 2 years after the surgery.....apparently the nerve monitoring machine they use in surgery won't give correct readings...from the manufacturer:

"the neurovision jjb system may not be effective, and is not intended for use, when muscle relaxants or epidural blocks have been used for, or in conjunction with, anesthesia. "

If you've had muscle relaxants/epidural blocks....that machine won't work correctly resulting in the surgeon hacking away your nerves.

You can research the manufacturer of the devices that are going to be used on you at the FDA Maude website. See "the reported" accidents that happened to know what is possible to expect. American Spine surgeons make the most money of all doctors in the world...maybe that's why they are under reporting when bad things happen in the operating room?

Google the Bloomburg article ""Highest-Paid U.S. Doctors Get Rich With Fusion Surgery Debunked by Studies"". I would post it's link here but it would be removed.

Surgery made me worse...and after they make you worse they won't help you and you will find it impossible to get pain medication. You will become suicidal due to the extreme pain.....Nobody cares...you are expendable in the grand scheme of things in America.

teteri66 02-11-2011 06:36 AM

Re: Terrified of my L4-L5-S1 spinal fusion
 
Luckily for ssofalvi, she resides in CANADA.

ssofalvi 02-12-2011 10:22 AM

Re: Terrified of my L4-L5-S1 spinal fusion
 
Hi All!
I usually try to write seperate replies, but I seem to repeat myself, so here is a general but specific post...
Thank you very much for all your input... as I prepare I am starting to feel a bit more comfortable.

[B]hausofmouse [/B]- I sincerely appreciate you sharing your thoughts with me. Sometimes it is hard to express the negatives eloquently and you managed that. Sometimes I do want to shut my eyes forever and ignore everything, not have to deal with all the pain and stress. But then I remember I want my life back. I do have my deeply depressing itmoment despite my best efforts. It is etremelylonely and frusrating but I have found some level of comfort and understanding here that I wasn't expecting. Thanks again from the bottom of my heart.

[B]Shelsers75[/B] -I'm happy to hear that you are on your way to a resoloution. I was adamant at the beginning that I wouldn't get surgery. But here we are... I can relate to your feelings of uselessness... It is a really bad part of this, my self worth has plumeted! I find myself coming rather close to the black pit you can't get out of... My life is already shades of grey, like you i find myself fighting off my depression. I would love to stay in touch! Let me know how your surgery goes! Take care and I will remember your comment "If it gives you your life back, it is worth it." Try and do the same!

[B]Teteroni66 [/B]- " came through wondering why I'd wasted all that energy getting so worked up over it." THANKYOU! this really gives me hope. I appreciate you sharing our story. I will keep in mind that the first week is the worst, but their is pain relief in sight. I will try to keep in mind not to push myself and listen to my body.I am also going to try and find that cd. i don't have a credit card so I will have to find it in store :S "dig deep and find the well of strength witin" and in a year I will be in a better place... Inspiring, really. I can't thank you enough. P.S. You're right, I am thankful I am in Canada, even though wait times are longer, I think quality of care is higher! :D

[B]Twohands[/B] - Thank you so much for sharing your experience!! I appreciate that recovery is a very personal thing. Like you, I am hoping I get an easy recovery... Fingers crossed!! I will keep in mind the need to keep my surgeon informed. I'll try to keep you updated on my status! Will you do the same?? Thanks again!

[B]guy484[/B] - I sincerely appreciate you sharing your experience. However, I am located in canada so those horror stories don't really apply. I am fully aware of the negative side of surgery, but... I can't live like this forever. I am already in excrutiating, extreme pain. I am deeply sorry to hear that youhad it so rough! Keep fighting, get a second opinion; there is always a way to get waht you need! And please, go talk to someone who specialises in pain managment, and perhaps a coubsellor with experience in chronic pain? Take care of yourself, no one else will. Take care and let me know how you are doing!

THANKS AGAIN EVERYONE!! ANYTHING ELSE YOU HAVE TO ADD WOULD HELP! AND I JUST LIKE HEARING FROM YOU ALL!! :D

< edited >

maltluver 02-12-2011 11:40 AM

Re: Terrified of my L4-L5-S1 spinal fusion
 
I have been reading this thread and have not replied as yet because I didn't think there was anything to add that hasn't already been said. As you can see by my signature I am a survivor of 7 lumbar surgeries....none of them due to mistakes by surgeons but to being rear-ended at 50 mph.

It's perfectly normal to be scared...NOT being afraid wouldn't be normal, lol. It is frightening to put yourself in the hands of others while you are asleep; I just hate not being in control. But, faith in your surgeon is a big part of turning that control over and it sounds like you have that.

You have worked hard at strengthening your back and that will work in your favor and should make recovery easier for you. I honestly think, that after the first week or two, your biggest problem is going to be patience. It's hard for all of us as we have had to put life on hold so to speak....but it is imperative that you take your time and let your body heal. Rest, walking, and patience is the ticket to recovery. Follow doctors order to a "T" and don't be tempted to do anything you shouldn't no matter how good you feel. You will be in charge of your recovery and should do nothing to put that in jeapordy.

I am really so sorry you are in so much pain and needing this kind of surgery at such a young age. It always hurts my heart when a young persons has to go through something such as this, but know that your young age is a plus as your body will heal much faster than mine does, since I am well past my prime, lol.

Do continue to post, ask questions or just vent. This is a wonderful forum for all us to share our pain and fears with others who know exactly what we are talking about. Never a need to apologize for venting or throwing a pity party cause we have all been there.

I wish you the best of luck....a successful surgery and an uneventful recovery.

Blessings,

Carol

Imarealpill 02-12-2011 11:56 AM

Re: Terrified of my L4-L5-S1 spinal fusion
 
I had a L5 S1 discectomy and fusion when I was in my 20's. I was terrified but in too much pain and muscular degeneration to do nothing.

If you have a good doctor and decent hospital, I am sure you will come out fine.

I did well for the rest of my life and I am now 56 and battling arthritis, and hypertension, but I'd have had no life without my surgery.

When you feel better and don't have that sciatica pain you will be glad you had the surgery.

chazz71 02-20-2011 09:41 AM

Re: Terrified of my L4-L5-S1 spinal fusion
 
first thing i would say is use a neuro surgen not orthapedic. the spine is nothing to take chances on. i had a 2 level fusion done at southwest 2yrs ago. DO NOT EVER GO THERE. i just got redone and now its a 3 level fusion.done at university main campus. dr. david hart. awesome dr. mine was done on jan 26th 2011. i am still in some pain but i noticed a difference soon as i woke up from surgery. my meds have been cut in half. having a back fusion most likely you will never be off meds. but able to use on a as need bases. good luck.


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