T10 to Illiac Fusion being proposed. Looking for feedback

Bones, joints and muscles
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Hi to all.  I'm a 76 year old woman, needing to decide if I elect fusion surgery or try to finish life with possible or probable increased pain & other symptoms yet to come, and would appreciate any feedback from fellow members who have had my proposed surgery and what were the results.

I was  diagnosed with Spinal Stenosis 10 years ago, have had epidurals & pt on regular basis. The last epidural in my spine still gave me some relief. Never had acupuncture. Meds include Hydracodone 10/325 x 4, Gabapentin 600 mt x 3, celebrex 200mg x 1, meloxiocam x 1.  When my feet went numb last year, my Pain mgmt. Dr became concerned that I should consider surgery while I was still"young & healthy"  and e referred me to an Ortho Surgeon & I got a second opinion from a Neurosurgeon. MRI confirmed a pinched nerve in spine likely causing the numbness. I have never had the severe pain running down the leg as usually is described in sciatica.. My pain( and sometimes burning)is in both buttocks close to each side of the spine, I also have piriformis pain and my feet feel hard often, the inside of the calves ache, all  making it painful to walk & I now use a mobility scooter often to shop. I also get sharp pains in my groin with certain leg movements. Sleeping now is interrupted nightly with groin or back pain as I make even small movements. Reaching up into a cabinet brings on the buttock pain like it's being pinched with a visor. .I've noticed a weakness in my lower legs/calves causing me to be off balance at times..I get foot cramps if I stretch in bed.  I swim 3 times week, continuing the aquatic pt techniques I was taught.   XRay of my hips show moderate arthritis and I have received hip epidurals as well as bursitis injections during the past 5 years. One more problem- perhaps just age- my hands have weakened where pushing to rise up from sofa, etc isn't so easy anymore.  Ironically, my feet numbness has subsided unless I walksome distance now

MRI  shows: L1-2 mod disc herniation  L2-3 Mild-Greater canal stenosis  L3-4,complete loss disc space, Mod to greater stenosis  L4-5 Broad Disc protrusion,severe arthropathy , mod to severe canal stenosis  L5-S1 Anterolisthesis 9mm, severe arthropathy & moderate stenosis

Surgeon would not guarantee that the surgery I need would cure numbness- said my symptoms at the time were not typical of stenosis, but he has enough data to operate, objective to straighten my spine and hopefully relieve pain. and advises if I put it off too far into the future, I may not be a candidate later on.   I know that this surgery has many risks and I understand that it's not a guarantee cure for back pain..

The Neurosurgeon's proposal is for T10 to Illiac fusion.  (My choice of the 2 surgeons based on professional referrals)

Proposed Surgery by Ortho: L4-L5 Laminectomy Bilateral L3-4 L4-5 & LS-S1 decompression  L2-S1 fusion with possible 1 or more transforiminal interbody fusions

Feedback most appreciated.  Seeing Neurosurgeon on 9-25

Judy

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I'm fused L3- S1 via a standard posterior TLIF procedure (rails and screws).  Later developed bilateral foraminal stenosis at L2/L3.  The solution was an LLIF (lateral) fusion that inserts an expandable "device" in place of your disc (see picture)...

https://patient.info/forums/discuss/the-expandable-spacer-570509

Immediate stenosis relief upon waking, one night in the hospital, no rehab, no brace.  (TLIF was 10 days, brace and 6 months of rehab.)  Search YouTube for "globus lateral" for the cute animation.  This was truly a miracle solution.  Talk to your doc about it or find a doc that knows and can do the procedure (mine's done about 2,000 of them over the past 15 years...best kept secret in spine surgery).

 

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Hi Judy

I am 63 and I just had a multilevel fusion L4-S1. I’ve had 3 previous laminectomys, 2 for herniated disc that was rubbing on my nerve sheath and 1 for spinal stenosis .  Before the fusion it was very hard for me to walk because of the pain in my hips and my legs .  Since the surgery I haven’t had to be on any pain medication  past the first month.   With the exception of a few aches and pains when I do too much I am virtually pain-free. I would say go for the surgery it will probably improve your quality of life . I had a neurosurgeon do mine but actually the surgery I had sounds much more like with the ortho do for you . Good luck !

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My fusion was this past April 

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Hi Chico

You are certainly enthusiastic about this procedure that worked for you - and I will print the link material and definitely discuss it with my surgeon.  He is head of Neurosurgery at a large teaching hospital with excellent reviews but in my 2 visits with him, nothing but the described traditional fusion was proposed for me.  I

know they have a minimal invasive division but he told me I wasn't eligible for that.  I did a quick visit to your profile and see you call yourself Arnold after having so many surgeries-  Well, I do hope you are ambling along these days without pain.  Will have to follow some of your threads to see.

My concern of course, is my age and worrying about the after-care and whether I will actually feel better. The pain meds I'm on don't touch the buttocks pain & burning but can't think of doing without them until I can function without them.  . I live alone, near my daughter, but from previous minor experiences, I can tell that she & the family aren't able to cover all the bases probably necessary and as a caring mom, I don't like imposing on them either.  Outside help will likely be best for all of us to maintain the best feelings.   

Your thoughts and suggestion is most appreciated and will try to digest it all later tonight.  I will of course

report back to the forum as I proceed along

Best regards

Judy

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Thank you so much crista for your helpful reply and I will reply more in depth to it tonight.

Best regards

Judy

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2011: I had a laminectomy at L4/L5 for a bone spur "crushing" (the neurosurgeon's word choice) my sciatic nerve root.  That was a lot of pain down my right leg for quite a while.  MRI showed nothing; he went in and found it.  Instant relief and diminishing nerve irritation/inflammation over the following few days.

About 3 years ago, the pain was back.  Chiro, pain shots...no joy.  Neuro took a look at the MRI and called my lower spine "a junkyard".  Forty-five years of playing hockey...the bill came due.  That ended up as the L3-S1 TLIF fusion.  Twelve days in the hospital, lots of PT and a back brace.  Came out of it OK.  Tough to bend for a while but survivable.

Had my knee replaced in March of 2016.  In October, I started having sciatic pain down BOTH legs.  That's when I got diagnosed with the L2/L3 stenosis.  LLIF this past March.  The delay was the sync-up between my neurosurgeon and my general surgeon.  The former does the spine work but the GA does the incision and moves "stuff" around so the neuro has a clear path to the spine.  You know...stuff...like muscles, liver, intestines...stuff...  GA also does the close.  Neuro gave me the re-fusing option or the LLIF...I chose column "B".  Best decision ever at age 69.

I'm not a doc but between all of this plus my metal hip (total of 28 ops in 18 years...mostly minor things...), I'll say that the LLIF was a gamechanger for me.  Your guy may not have recommended the LLIF because it's not applicable in your situation.  For that, I have no idea why or why not the procedure would be appropriate.  I'm just saying that it's worth asking the question.  If he dismisses it out of hand, I'd smell something fishy...regardless of his stature, position or number of letters after his name.  If he has a really, really good medical explanation why the LLIF won't work for you, then I'd take his word.  But I'd rather ask him the tough questions, watch his body language and listen to his words AND tone of voice.  Some docs like doing certain procedures because that's what they're good at...not necessarily what's best for the patient.

THIS IS YOUR BODY...OWN IT!!!  Make sure what's going to happen is right for YOU!  If your doc says no to the LLIF, I'd find someone in town who does the procedure on a regular basis.  Bring the films; get a second opinion.  The first guy might be absolutely correct...no harm in asking.

I've recovered from the TLIF and the LLIF...there's no comparison.  The only question is if the latter is the right one for you.  Do the research...ask the questions...get that second opinion if necessary.  You only get one shot at this.  Make it count.

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Hi Judy,

Sounds like you have kept going well till now, swimming is great and trying to keep your level of fitness and fine muscles supporting your spine in good shape.  well done

I've got mixed reactions for you based on my personal experience.  I had a very difficult time with 7 spinal surgeries and would certainly say proceed with extreme caution and with a surgeon in whom you have great confidence making sure you are fully informed at all times.  

Some people having spinal surgery seem to bounce back very quickly even with some it is only a day procedure? but for me recovery was long and difficult and involved lots of laying and then long periods in a back brace BUT repairs did give me 10 years of active life that I thought I would not achieve again and a certain amount of relief of symptoms.  I am now however 20 years post surgery and in intense pain dependent on on very strong pain medication and fighting to control all sorts of symptoms parethesia and weaknesses considerably disabled and with very reduced mobility.  They call it post surgical spinal pain syndrome which apparently is a specific condition.  Since the surgery I have also now some related myelomalacia which is spinal cord softening and can be caused by haemorrhaging during / post surgery. I have related  badder and bowel dysfunction due to cervical collapse as well which complicates my situation.

Here's what my take on my own situation is...I was warned that as repairs / fusions / metalwork supported one area of my spine inevitably more pressure would be put on others and that therefore more problems awaited me over time.  I however have the extra issue that I have osteoporosis, as well as the more common spondylosis as well as a host of arthritic and other degenerative changes.  

I am definitely no expert, my experience is with animals! but my advice would be try to find out what symptoms are related to the specific level that they hope to repair so that you know which of your problems will likely be helped by the surgery and don't therefore have unrealistic expectations if you have a lot of other degenerative changes in your spine.

I have however survived 7 surgeries including anterior cervical decompression and fusion with inter vertebral peek cages c3/4 c5/6 and c6/7 with posterior instrumented fusion c3- c7 as well as anterior and posterior instrumented decompression stabilisation fusion at L4/5 with rods and screw fixation following foraminal deroofing and additional  bone graft fusions applied at higher levels to encourage fusion. 

I also have compression fractures at D6 so it is hard to know where all my symptoms come from.  HOWEVER if I had not had the surgeries I would not have been mobile very much sooner, in fact at the time of my lumbar surgery I could not use my left leg or walk properly and all that improved with much physiotherapy and hydrotherapy for many years and I did get a degree of pain relief although not long term it was substantial at the time.  I returned to horse riding competitively and veterinary work which was my profession and continued working and riding for another several years all be it in a less demanding physically role as a lecturer and manager and to this day I am more comfortable sitting on a horse than in a chair!!  I was however quite a bit younger than you and even so it was a very hard time to go though.

I definitely agree with your surgeon only go ahead if you are otherwise fit as it will be harder to recover the longer you leave it.  I have found that nerve damage sustained by delaying some of my later neck surgery has caused me long term problems as nerve damage can not be undone.  My disappointment is now living with what they call intractable pain and dependent on very strong medication but that would probably have been the case if I had not had the surgery it would have been worse sooner I'm fairly sure.

If you have a good home support structure (I think that is very important) and trust in your doctor go for it but be prepared for a hard slog, then if it's a breeze you will feel that's a bonus....  Unfortunately there are no guarantees on outcome but these days doctors are reluctant to offer surgery to older patients unless they feel that they will cope so they must have confidence in you!   I will be glad to hear what you decide and how you get on. LOL

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Hi Judy,

By now you may have already had spinal surgery.  I hope not.  I recommend that you first try reducing your Gabapentin.  Since starting Gabapentin 300mg (2 in the morning and 2 at night) last spring, I have developed virtually identical symptoms to those you have been experiencing....progressive weakness in my legs, pain in my lower back, radiating into my upper thighs, burning sensations in my buttocks and my calves, loss of balance, difficulty walking, etc.  I have searched the Internet and have found a scholarly article or two affirming the link between high-dose Gabapentin and the above symptoms.  

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Hi Chico, Chrysy & Crista

Apologies for not coming back on thanking you again for all of your info and support.

No, Chrysy, I still have not had surgery on my spine and am not sure I will resort to it.

There's no question that I have very advanced stenosis, multi-level spondylosis, etc.

am stooped over a bit and have difficulty walking.

but after my visits with 2 highly recommended neurosurgeons, neither seemed to be convinced

that fusion surgery would cure my specific symptoms.  I've never had sciatica type pain. Originally

I saw them because my feet were going numb and my pain mgmt dr said it was time to

speak to a surgeon as my age is advancing and IF I was a candidate for this surgery, 

the recovery wasn't easy and the older I get, the harder it would be.  The numbness in my

feet is now periodic, the pain in my spine is worst when I'm sleeping, but tolerable in

daytime & sitting at this moment in time, but has been an 8-9 in the past.

Unfortunately, the problem has now shifted down to my lower legs & feet,

walking normally isn't possible because of stiffness & shin & instep pain, i'm assuming it's compensation

for my walking changes,  so I'm using a cane & ride a mobility.

 scooter to shop. I'm doing the foot soaks & rubbing liniments which are only band-ids.

I sometimes feel like my whole lower body is crumbling- which is sort of what the surgeon had indicated.

Bottom line, I'm terrified of the spinal fusion at my age when there's no assurances that I will

actually feel better.. Not sure my family is prepared either to provide support I'd probably need for the 1st 6 months, or if something went haywire.  I still go to the warm pool 3 times a week and do the therapeutic exercises I was taught 2 years ago.  

My hips are also deteriorating & 4 months ago, seeing a hip specialist, he said I've got bone on bone in both hips,  so I'm going to re-visit him in August to see if hip surgery should relieve some

of the symptoms I now have.  I have stabbing pain in both side of groin when moving legs and

cannot cross my legs or easily put on socks.  I've just begun hearing "clicking sounds" from the

backside of my body and darn if I can hear exactly where they are coming from  lol.

So, I'm at a crossroads,  whether my symptoms are actually back related or hip related.  I understand

hip replacement recovery is generally much easier than spine.

Thank you Chrysy for the Neurontin info. I've actually been approved for an increase to 900mg per

day- so will discuss this with the dr.  I'm approved for 4 Hydro-codone, acetaminophen but try to get by

on 2-3. The Neuronton, which he & some other md's I've been to seemed to think this drug wasn't

harmful- and I know folks who are taking 2400 mg.  

Anyway, I will report back with hip dr's assessment and I'm due back at the spine surgeon in late

August, just for a 6 month followup.  He's just waiting for me to make my decision.

Kind regards

Judy

 

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Sorry, it looks like Cullen told me about Neuronton-  not sure how to edit my post, so correcting it here

Judy