8 replies to this topic

[Avocado Baby]

Hi,

I think I posted about this a while back and I can't remember whether it was before or after I had my last spinal fusion. Anyway, forgive me if I'm repeating myself.

I have Spina Bifida and kyphoscoliosis.I have spinal curves of 70 degrees at the top, 80 degrees on the bottom and a forward bend of 50 degrees. I feel uncomfortable all the time, although I feel very fortunate I'm not in constant pain. It's starting to affect my lungs I think. When I eat or drink I feel really full and sick and I find it hard to breath properly. My voice goes all funny too. I'm struggling to sit up and I get alot of headaches from my sore neck muscles.

I've been to another spinal consultant who is proposing a fusion from T3- the sacrum with the aim of straightening me up and making my spine more stable. It would be a huge surgery though.

What I want to know is, whether any of you guys have gone from having a lower fusion (having already been paralysed) to a higher fusion and how it affected your mobility and independence. At the moment, I'm almost completely independent. I get carers in every couple of days to help me do laundry and domestic chores, but I manage personal care and day to day living myself. I've been brought up to be very independent and I'd get quite depressed if I had to rely on other people for lots of things. Again, I feel bad saying that because there are people who aren't able to look after themselves.

Anyway, if there's anyone out there who can help me with this, I'd be extremely grateful.

Thanks

[ButterflyInAmbr]

I'm not sure whether or not my experience applies to this, but...I fractured my spine at the T10-11 level, but because I had developed scoliosis in childhood (25 degrees on top and 30 on the bottom), they fused my spine from T2 to L2 in order to maintain its stability. So, I haven't had two separate spinal surgeries like you are thinking about doing, but I have had my spine fused outside of the area of my injury. It hasn't affected my ability whatsoever, and in fact it has been a real advantage because I don't get major backaches as often as I used to.

Edited by ButterflyInAmbr, 28 May 2009 - 02:00 AM.

[Beautiful]

I was paralyzed when I was 3, but they only put like a tiny pin at my C6 level (it was an incomplete injury), and another one at L3-L4. They were going to remove it recently during my second spinal fusion, but it was fused way too much to even bother removing, lol. But they weren't even like major fusions... just tiny pins.

But I had a surgery in 2004 to correct my scoliosis. They placed titanium rods on either side of my spine. It was about a 16-18 inches long. So basically from my neck all the way down to the top of my butt. My curve was somewhere between 65 degrees* . My spine was a giant C basically. Right after surgery I was around a 15* degree curve.

Unfortunately, about 7 months ago I was experiencing pain, and when I went to the doctor and had x-rays done, I found out my titanium rods had snapped in half. The bottom half, or where it broke, didn't fuse to my spine, and that caused my curve to come back to around 20-25 degrees.

So a month ago on April 21st they redid my spinal fusion (my 10th surgery). I'm not quite sure what they did, but from what I got from family members, they told me that they took out the bottom half that didn't fuse, and put some contraption in there to replace it. The top part of my first infusion wasn't touched at all, so my incision started above my bra line by like half an inch. They they put like 16 screws in my back to make sure it stayed in place. However, this time it went a little past my tailbone. They also put bone mass protein over it to make sure it would fuse this time.

When I was recovering this time in the hospital, I was told by my doctor and the therapists that for 3-4 months, I can't transfer on my own, twist my top half, or bend over. I have to be like a log, and make sure my body is in perfect alignment all the time. It has been SO frustrating because I still have about 2-3 months to go. My independence is totally gone. I was about 100% dependent before, and now I have to depend on others to help me get in my chair, get food, help with laundry, etc. It is so frustrating not being able to spit in a sink to brush my teeth because I can't lean over!!!

So I totally understand about not wanting to rely on other people because that is how I was. I'm miserable, but I'm young, and if I waited to have the surgery it might have been too late. They wouldn't have been able to straighten me out as well, and my curve would have gotten worse. Now I am at about 10 degree curve. I'm not perfectly straight, but you can't even notice it. They're monitoring my back to make sure its all okay. I had x-rays done in the hospital, one when I had my staples removed two weeks later, I am having one done in two weeks, one at 6 months, 9 months, 1 year, 15 months, 18 months, and 24 months. They said I wouldn't be FULLY functional until two years, and that will be when they know when it is REALLY fused.

A little personal story though... I wanted to see if I could transfer onto my bed which is higher than my chair, so I did that. Then of course I had to get back into my chair... I definitely was not supposed to... so my back is hurting a bit. When I was put into bed that night, my back popped, and the person who put me into bed was like "oh my gosh, I'm so sorry!" so I blamed them for my sore back, hahaha. They'll never know it was because of my stupidity. LOL.

I know what you mean about huge surgery. I weigh under what I should, so because of that I'm anemic. The first fusion I had to have 7 blood transfusions during my hospital stay. I was in the ICU for a few days. It was terrible. Even after surgery I was losing blood, and I was already anemic, so they were worried. This time around my blood count kept dropping, and during surgery they decided to take out blood anyway in case I needed it. And I ended up needing it. After surgery I was losing blood again. Sorry I am jumping around so much, it is late and I am so sleepy, haha. But you're right, it would be a big surgery. The pain I had was pretty bad. I have a high pain tolerance, so when I had tears in my eyes, people knew I was in bad pain. I tolerated it pretty well though. However my heart rate stayed up. They wanted me to be around 80-100, and it was at 140-150. After a few days they tried to get me on oral pain meds. I always tried to deny them. Even when they sent me home they sent me pain medication like vicodin and percocet, but I only ended up taking like 2 or 3. I'm the kind of person who is so grateful to be alive, when I should be dead, that pain reminds me that I'm still living, and that makes me ignore it better. Pain just doesn't seem to bother me a whole lot.


With all that said, I don't even know if this is the kind of information you're looking for, lol.

**In a previous post I said my curve was first at 75 and it went down to 30 or something, sorry, I was wrong. When I went in for my pre-op, I had my doctor look at my history, and it was actually 65 & 15.**

Edited by Beautiful, 28 May 2009 - 09:58 AM.

[Avocado Baby]

That's exactly the kind of feedback I'm looking for.

After I had my first fusion in 93, I was told the same things about rolling over etc but after the last one in 2007, I was told to 'go back to normal', which of course I couldn't. I seems that things have changed alot over the years and different surgeons also have differing views on what you can and can't do post-op.

Edited by Avocado Baby, 28 May 2009 - 09:32 PM.

[Beautiful]

I had uploaded pictures of my back, but people felt the need to take my personal photos without my permission , so I removed them. I can PM them to you.

Are you thinking about talking to your surgeon about the surgery? I mean, if it'll help you, then I think you should do it. It is tough deciding what to do though, because you don't know how you will be affected until after everything is done & no case is exactly the same. The thing that was difficult for me was losing sensation. Before surgery I could feel down to my mid thigh. After surgery I could only feel half my ribs. Everything below that was numb. I'm just starting to get sensation back. During surgery they were monitoring my nerves and pressure and everything, and they didn't get affected, so my doctor was kind of concerned why I had so much loss of sensation.

[Avocado Baby]

Thanks Beautiful.

It would be great if you coulc PM me the picstures. I'd really appreciate that!

I've already spoken to the surgeon twice about the surgery. Once before I had the last fusion and he said if I was fused to T8, I'd continue to curve over the top (I have) and once since. I've also spoken to his Spinal ellow. I talked about sensation to and things. I only have sensation to just below my ribs anyway so he said it wouldn't cause any damage to any bits that are still functioning.

I'm going to talk to my physio when I see him again and ask him to check where I'm moving when I'm doing certain actions cos I've noticed I do twist when I'm 'landing' on transfer.

My movement did change quite a bit after the original fusion and although it was quite difficult for a while, I have got used to it and found that some of my function has come back. I think it takes a while for things to loosen up. Also, I'm on a forum for people with scoliosis and they have said alot of their numb patches do regain sensation eventuallu.

Thanks!

[Avocado Baby]

[size="4"]Ok, I've thought of some specific questions cos I've noticed I do twist and am wondering whether it would be possible after a high fusion.

When I transfer from the shower to my chair or my chair to my bed, I transfer to my right with my chair at a diagonal angle to the shower or bed. Because my balance is a bit rubbish I tend to support myself by leaning over to the right and supprting myself with my left arm. (Hope that makes sense...feeling a bit dizzy after taking painkillers) Is this something others with a higher fusion are able to do? I've been trying to work out whether I'm twisting from my spine or hips.

Do you find it difficult to reach back to get the seatbelt when you're in the car? Also, does anyone have problems getting their shoulders back far enough to push their chair? It's kind of vital to us so I really wouldn't want to mess that up.

Thanks everyone!

[Avocado Baby]

Just thought I'd add some x-rays to this thread. Sorry they're not very clear. I've had some done since and I think they probably show progression of the curves, but I don't have copies of them.

Attached Thumbnails

• 
• 

Edited by Avocado Baby, 04 July 2009 - 01:09 PM.

[Char]

I just had a second fusion. My initial fracture and fusion was in 1992. I was fused with 2 rods and 4 screws from T12 to L1. I wore a back brace for 6 months. I then developed scoliosis below the fusion and pelvic obliquity. It kept getting worse and pressure sores in non sacral areas as the pressure shifted weight more toward middle of body. So I just had another surgery this May. All the old hardware was removed. It was 2 days of surgery. The first day was through the front to fuse all my pelvis together. The second day was all all new rods, screws and plates into my back from T10 through sacrum. Additionally, I used to sit on my tailbone. The surgeon took my entire pelvis and tilted it backward. So, now I have a sway in my back, my chair no longer fits, and my back cushion no longer provides any support. I sit straight and love it. But there were downsides. I spiked fevers for 4 weeks for no reason found. I was in ICU for 2 days also due to fever and high resting pulse rate of 130 after second day of surgery. I spent two and half weeks in hospital. I could not transfer from bed to chair or couch initially. I am in physical therapy again and all of that has come back as body healed. The biggest issue was bladder. I self cath intermittent and used to be able to go from between legs. Because of the pelvic tilt I can no longer do that because my arms do not reach. I struggled for weeks to figure out a way to go myself and now do it from the side. We will see if this becomes a problem with UTI as it is not most sterile way of going. My surgeon has advised me that I have no restrictions. He says I have so much hardware in me that I am not going anywhere. Course I am playing it safe as I recall all the restrictions from the the first time around and do not want to break a rod. It is tough but I do love the result. I still have some pelvic obliquity due to bone shaving done from a pressure sore flap surgery in 1994. Once I get a new chair with a custom back cushion fitted just for me, I will be better off. I toyed with motion concepts back as now I have Roho jet stream 12 inch. But the therapists think a custom 12 inch back molded just to me will be best. My actual SCI level is T8 as sensation goes at ribs. Good luck with any decision you make.....

Edited by Char, 04 July 2009 - 04:20 PM.