Cyst on my Lumbar Spine

[Carolina]

Dearest Sjogren's Angels,

Three weeks ago I suddenly had horrible pain in my right hip, knee and ankle.  I saw my orthopedist and after an X-ray which ruled out a hip problem, a diagnosis of 'sciatica' was made.   And I was sent for an MRI of my lumbar spine.

A synovial cyst at L3-4 was found.  I continued to be in pain if I stood or walked, but if I stayed seated or lying down, all was well.

I saw the spine specialist this morning and he is going to try to 1) drain the cyst 2) burst the cyst and/or 3)Inject the cyst with cortisone.  I don't think he will do all of those things, but which he will do depends on what he finds when he tries to penetrate the cyst.

He's doing the procedure with an epidural on an out patient basis, in a special suite in the office. I'm having it done on August 25, and I asked to be put on the list if someone cancels sooner.

I didn't realize that having the cyst removed surgically means cutting through bone, so I surely hope it doesn't come to that!  I cannot take any opioids and fear any major surgery ever.

I had arthroscopic surgery on my knee with only Tylenol for post surgical pain.  I can do that, but not spine surgery or even a knee replacement, for Pete's sake!

I'm exhausted by the visit to the doctor this morning.  I had to take a nap when I got home, and I never take naps.

I also have narrowing of my spinal canal caused by osteoarthritis causing the surrounding bone to close in. I have terrible osteoarthritis.

This isn't related directly to my Immune Disorders, but it falls under the heading:  It's always something!

I've been reading How to Be Sick, by Toni Bernhard again.  It is so hard to be unable to do even the most minor thing like clean the kitchen, and I feel like everything is falling apart.  So I need to relax and realize all is at it should be.   I just am always surprised when something new happens, especially something I never expected and don't want.

Hugs, Elaine

[Joe S.]

I am sorry that you have this. If you wish, there are tones that have been successful with other cysts.

[Kathy57]

OMG, Carolina,

One more thing to worry and suffer through.  I hope that they can just inject you with a cortisone shot.  That might be the safest or drain the cyst.  I'm sorry that you have one more thing on your plate.  Nobody deserves that.

Good luck and let us know what happens.  Thoughts and prayers coming your way.

Kathy

[SjoGirl]

Oh Carolina, god love you. Prayers for strength and endurance are coming your way.

[eija]

Oh my. I'm so sorry for your continuous ordeals. Praying that the operation goes smoothly and the end result is good.

[Carolina]

So Dearest Angels,

I had the attempt to deal with the cyst today.  The cyst was too 'tough' to aspirate (suck out the stuff) or burst, so the doctor put in some cortisone and said 'good luck'.

That means if (and when) the pain returns, I will be faced with surgery on my spine, or, no more walking.  Although I was beginning to have pain, even when seated and lying down starting two days ago, not  just when standing/walking.

So I will need surgery on my spine to remove the cyst.   Eventually.  The Minimally invasive kind.

I've figured out where I want the surgery:  Duke Hospital in Durham NC.   And I've been studying the surgeons there.

I want someone under 50, with excellent medical school, residency and fellowship institutions.

But on the whole, I'm tired of all of this right now.  And I will wait to see what happens in the next month or so.

I'm disappointed I wasn't in the 50% of patients who have the cyst resolved without surgery.  But I wasn't shocked, or even much surprised that I wasn't, either.   My default seems to be more rather than fewer problems.  It's just because of my Immune Disorders....so I'm not typical.

And So:  Patience, Persistence and Acceptance.  And keep breathing, of course.

Regards,  Elaine

[Carebear]

I am so sorry to hear this, Elaine.  I do hope the cortisone provides some relief for you very soon.  Thanks for sharing.

[lighthouse33]

Carolina, I am sorry it did not work out as you had hoped.

You might want to check out Dr. Hey at the Hey Clinic up in Raleigh.  He did a wonderful job fixed up my dad's neck.  Just a thought.

[Deb 27]

Caroline, I am sorry to hear the aspiration didn't work. I hope you won't have much pain and the other surgery won 't be too difficult.

[Carolina]

Well, the pain is back.  The cortisone injection in my spine lasted 10 days.   Yesterday I could even vacuum with the heavy vacuum....today, three minutes upright, and that's all I can 'stand'.

So, what's a girl to do?   There is a spine neurosurgeon at Duke Hospital who mentions Synovial Cysts among his specialties.  The problem:  If the cyst is removed, it will most likely come back unless my spine is also fused.

I've been reading about it.  It is clearly a horror show (plates, screws, god only knows what), and at least a year of recovery.

This is serious business and stuff I never ever thought I would have to think about.

Any thoughts, experiences, would be most welcome.   I will be here cause I can't really go anywhere much.   I wish I'd cleaned the entire house when I had the chance!

Regards,  Elaine

[trc1962]

My mom was faced with kind of your situation - have a spinal fusion surgery, or not be able to walk and of course she chose the surgery. She was 75 at the time and the first few days after the surgery were hard because her incision was from the top to bottom of her neck and spine. However, after 6 months of recovery and therapy, she was doing a lot of her usual things and definitely feeling better. Today she walks 3 miles a day at 77 and besides sitting with a straight back for a chair, lives a pretty normal life. It won't be an easy thing, but hopefully it helps to know of someone else who made it through and lives pretty well. I am sorry for this new challenge thrust upon you and hope you can get the best to do your surgery and a good therapist for recovery. Blessings to you.

[Tharrell]

I have a spinal fusion with plares and screws. Looks really cool on xray. I had previously already a back surgery to remove a busted disk, so when the next one up disk busted they had to fuse. I had no choice, I was in horrible pain. Yes it is a very invasive surgery. I had to wear a hard plastic, cast type, girdle for nine month. Then came physical therapy to strengthen the now lazy back and stomach muscles. Two years later I started Martial Arts and became a 3rd degree black belt and certified martial arts instructor. It's up to you and how hard you work at your recovery. Right now I'm recuperating from last weeks total hip replacement on my right. I'm already trying to figure out how I can possibly do martial arts again. Definitely no contact any more.

[susanep]

Caroline,

I am so sorry that you have to go through even more. You will be in my thoughts and prayers dear. Hopefully the person you get to do whatever you need will do a great job, and you will recover well.

Hugs,
susanep

[Carolina]

Dearest trc1962 and Tharrell,

THANKS so much for your responses.   I had a terrible night, until 2 am when I took 1800 mg of gabapentin, and slept well until 1 pm today! 

I had been withdrawing from the gabapentin, but decided that it might help with the unbelievable nerve pain, and it did.

There is a 'shadow' of the pain even when I'm lying down, but nothing like last night.   

I researched the 'minimally invasive' method of taking out the synovial cyst on my spine. Since it works to remove the cyst (which is causing my pain) I will opt for that, but only if the surgeon agrees that this is the best approach.  If he really thinks a fusion is necessary, I will go with that.

The one thing I know now is that the cyst must be removed.  The second thing I know is that gabapentin is a miracle for nerve pain, and I'm so glad I have it.   I can't take opioids, and they aren't best for nerve pain, anyway.

Joe, I'm trying to remember to 'breathe'.   I'm still holding my breath from last night's pain, and that doesn't help at all!

Hugs, and breathing, Elaine.

[irish]

I am late getting a post to you. I am sorry that you are having this issue now. So many things come up with us as we get older. I know, I hate that phrase also, but darn it all, it is true. When we have these autoimmune issues, immune issues, etc. and the new things come up it makes it all that much more complicated. You have a lot to think about with this new ailment. I will keep you in my prayers as you ponder over this. Good luck. Hugs. Irish