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Yippee-Ki-Yay

Spinal stenosis?

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Yippee-Ki-Yay

Any advice? MRI shows narrowing of the canal and currently minor compression of some nerves. It’s enough to make life difficult though and can progress. I am thinking that given my other medical issues that I will agree to surgery if it is offered.

 

Would appreciate hearing others experiences.

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Yippee-Ki-Yay

Anyone? Im after ideas of what the surgery entails and recovery times etc.

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Lees75

It depends on the cause of the canal stenosis. Sometimes they will do a laminectomy, where the lamina (part of the vertebra) is removed to create more space. Other times they will do various types of fusion surgeries.

 

What level is it at?

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Yippee-Ki-Yay

L4/5. There was something in there about some protrusion and that causing compression of the nerves.

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Mumma3

I have had 2 microdiscectomies on L5/S1, due to sequestration of the disc.

 

They are not likely to offer surgery in the first instance, and TBH, exercise helped me avoid it for some time. Until I began to develop cauda equina, which meant surgery was urgent and not a choice.

 

Recovery after the first one was pretty good, but keep in mind no lifting anything over 2kg for about 6 weeks, no driving for 2 weeks, no bending or twisting. You WILL need assistance with housework etc - DO NOT attempt to try and do the things on the don't list, as this will slow the recovery. I did well for about a month until more of the disc protruded and began to cause pain. Unfortunately, due to family reasons (DH had a heart attack) I wasn't able to have the 2nd surgery soon enough, which meant that recovery from it was much longer.

 

It is just over 12 months from my 2nd surgery, and I unfortunately still have daily pain and mobility issues. The scar tissue is also causing problems. I go to the pool and to aqua exercise 3-5 times per week to try and keep on top of it, but at some point, I will need to have a spinal fusion (which was plan A for the 2nd surgery, but I wasn't keen to go for such drastic surgery at that stage).

 

I'm aware of the combination of what you are going through at the moment - disc and nerve pain is exhasuting and debilitating, kids with SN in VCE and while I realise you have lost your DH so it's a bit different, for much of the time I was recovering, DH was also out of action.

 

TBH, with the circumstances you are in, and particularly with your DS, i'd try and avoid surgery at this stage, if you can. I am not a medication taker generally speaking, but I used voltaren and some other strong pain relief when I had to, as well as heat packs, exercise and physio (inc massage as well) to manage it as long as I could.

 

If you do end up needing to have the surgery, then see if you can get some assistance with at least the housework side of things, meal prep etc I'm happy if you want to PM me - when I read some of your posts, I feel very much that I can relate to your situation. Best wishes

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Yippee-Ki-Yay

I cant avoid surgery. I literally cant stand long enough to prepare a meal or to get to and from my car without a walking stick. I pee when I walk and have trouble controlling my legs.

 

My neuro has pushed my next appt from Thursday to Monday, so I think he feels it is urgent.

 

Im worried about my job as well of course. If I can hold off, I will, but at the moment im not far off not being able to walk at all, so I dont think it can wait.

 

I know that my muscle issues with Parkinsonism will hinder my recovery too, not to mention having no one to help with the kids. Its not going to be easy, but if it means the difference between being able to walk and not, I want to be able to walk.

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Mumma3

Do you have PHI? Ours had a home care package which paid for a home help visit - 2 hours a week for a couple of weeks. This was great - floors got washed sheets got changed which were things I just absolutely could not do.

It does sound like the neuro might want to go to the surgical option, given your symptoms.

Is there any way anyone can help you out at home or with kids? With the VCE, (I know your school isn’t exactly helpful, but anyway) let them know that you will be in hospital and having surgery. That can also be a reason for special consideration to be allowed for any SACs around that time.

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kadoodle

I have no experience with spinal injuries or Parkinson’s, but I would be shaking down the local council, Centrelink, your church, your social worker and anyone else who you can think of to help you with practical stuff.

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Yippee-Ki-Yay

Sorry Mumma3 I probably sounded completely dismissive of your post and I didnt intend for that. I found your post very helpful, but also everything I am worried about.

 

No PHI here. NDIS funding should be able to help a bit. Will just have to take it as it comes.

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Mumma3

No worries. Constant pain of that kind can make us all a little short.

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Soontobegran

I have spinal stenosis and cord compression but there is no intention from me to have surgery any time soon. I have had way too much and I just can't cope with more at the moment.

 

I am doing hydro therapy and pilates trying to improve my core strength but my symptoms other than pain are transient as in tingling, numbness and weakness so I think I will string it out for if it becomes an all time thing.

 

If your symptoms are progressing so quickly then perhaps sooner rather than later. If your bladder is affected then you could go into an ER. Cauda Equina is an urgent situation so you may be attended much faster than going via your GP or NDIS.

 

My son is day 3 following a spinal fusion on L4/5 and SI after 2 failed microdiscectomies he is brilliant. He was up 12 hours post surgery and today was walking around without the pain he has had for 18 months. He has surgical pain but he is ecstatic.

Recovery is so so much better than it was 20 years ago when my husband had the same as the techniques of surgery are so improved. His was done by a robot.

 

Good luck.

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kadoodle

By a robot?! Sorry to hijack, but wow!

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Yippee-Ki-Yay

Thats all really heartening to read. The symptoms related to my back started about five years ago and were manageable. It got worse about six weeks ago and a LOT worse about two weeks ago.

 

At the moment my physio doesnt want me to do pilates or any core strength training as my back is too unstable. She is writing me up a hydro plan though.

 

I also have scoliosis just above the problem area. I dont know how much of a problem that might be.

 

My neuro should rush any procedure through if he feels it is necessary. I will have much more of an idea after my appt on Monday. Just trying to get my head around things as I have no doubt I will need to do some preparing.

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Yippee-Ki-Yay

Fecking ready to do my 'nana.

 

Why push my appt forward four days just to tell me that yes I have spinal stenosis but that you dont think its the reason I cant walk more than fifty metres without a walking stick.

 

I wonder if it was him living like this he would be happy to "wait another six weeks and see what develops". I cant stand to prepare food and cook (even my perch chair for the kitchen is barely helping), let alone iron or clean. I have global neuropathic pain. I am used to pain. This can be an 8 or 9 out of ten kind of pain that makes me cry.

 

I dont even know if this is separate to or in addition to my Parkinsonism. Neither does my neuro. 15 years of "we just dont know" is starting to irritate me.

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kadoodle

Irritate you? I’d be ready to flip the table.

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Yippee-Ki-Yay

Well 'irritate' in this instance means, ready to give up on quality of life permanently and throw a world class tanty. same same?

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kadoodle

Do you have a tanty throwing dress?

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Soontobegran

By a robot?! Sorry to hijack, but wow!

 

 

I know. It was done via an MRI image being programmed into a robot.

Real people did the opening and shutting but the robot did the actual placement of the metal work.

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Yippee-Ki-Yay

So its been nearly two years now and I can no longer stand for more than it takes to make a coffee. Standing in the shower to wash my hair is (without wanting to sound overly dramatic) agony. I have gained nearly 20kg in the last six months due to being unable to move (and eating too much crap because I cant prepare my own meals very often).

 

I meet with my neuro in a bit over a week. I am terrified of being brushed off. I feel as though I have zero quality of life. I cant walk to the end of the street where there is a park. I cant walk enough to do a grocery shop.

 

Last time I saw my neuro he mentioned my weight and that I needed to be moving as "our bodies are made to move". I felt very embarrassed and made a point of never using the lifts at work, parking further away etc. Now I cant do any of that. I cant and its not because I am enormous and unfit, its because my back honestly feels like something will snap.

 

How do I get my neuro to understand that this isnt me being fat and lazy? This is me in significant pain and unable to do even basic tasks.

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Soontobegran
Posted (edited)

I am still going without surgery but I have been able to maintain an exercise program that seems to keep me manageable.

It has been hard in ISO but instead of the pool I have been heating my spa and doing my exercises in the water.

I also follow the plan given to me by my physio pretty religiously.

I have lost weight and to be honest it makes a difference but I understand that it becomes a chicken/egg situation.

 

I would imagine, based only on my experience of course that your surgeon will suggest weight loss before anything else happens. The problem is finding something you can do without flaring pain up.

 

Good luck with your appointment, I hope you get listened to and you can get a plan in place.

 

If he insists on being a judgemental muppet then I'd find another neuro.

Edited by Soontobegran
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Yippee-Ki-Yay

Thanks STBG, that sounds reasonable. I havent been able to do hydro for a few reasons. I have weekly physio (which has been on hold for a couple of weeks because of issues with the kids needing a lot of my focus) and I do daily stretches and gentle exercises to try to build core strength.

 

I dont lose weight easily with diet only changes, it tends to drop off me when I move around though, so thats frustrating. I do agree its become an ugly cycle of pain=restricted movement=weight gain=more pain.

 

Glad you have been able to avoid surgery so far and glad you have been managing ok. Is there a threshold for you as to what point you would request intervention (obviously weight issues notwithstanding - I will keep trying to address that anyway)?

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Babetty

I don't have any advice to add, just wanted to wish you the best for the appointment.

 

Re the weight - if it gets mentioned I think the way you said it above is best - that you feel stuck in a cycle of pain = restricted movement = weight gain = increased pain, and that it's now at the stage that you're finding it physically impossible to move more.

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Soontobegran

Is there a threshold for you as to what point you would request intervention (obviously weight issues notwithstanding - I will keep trying to address that anyway)?

 

I think there's an unspoken agreement between my neuro and I that if the compression starts causing permanent numbness or loss of mobility then it will happen. At the moment it is transient....pain not so much but the other is.

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Yippee-Ki-Yay

Some more questions if you dont mind STBG.

 

Would the fact I also have scoliosis (17 degrees) and chronic symphysis pubis diastis be relevant in any decision making? Im not sure Ive mentioned the pubic issues to my neuro before. I know youre not a neuro, but you have years of medical experience and you can probably guess. I have no anatomical or real medical knowledge and have no idea if its relevant and I get the impression my neuro thinks I am looking for something to be wrong, so I dont want to mention it unless it is necessary.

 

Also with the pain, you say its constant. For me, I get relief from being seated and either leaning forward or in slight recline. Other than that the longer I am upright the more the pain builds to strong pain like labour pains but in my back until I cant stand it (pun intended) and within seconds of sitting, it has eased to manageable levels again. I already have transient numbness and needling and burning pain in my legs and feet. But I had that before anything issues with my spine were there, way back when I had a lesion on my brain and 'inflammation' seen on an MRI. Can I ask what your pain experience (if thats not too nosy)? I guess Im wondering if I should brace myself for things to get a lot worse before intervention is an option.

 

Thanks Babetty. I will tell him that I felt embarrassed at his last comment and that I made a concerted effort to increase my movement (we had seen eachother in stairwells, so he will know this is true) but its hasnt gone well.

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Kiwi Bicycle

I know from my DH, surgery was the only option when he presented with numbness, almost parapelgia and bladder and bowel control issues. Then he was rushed in. A friend with only pain and movement issues is still waiting for surgery through the public system.

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