TERRIFIED! Slipped disk, major surgery ahead

[pleasemama]

I haven't posted in ages, I am Wendy and I am a 38 year old who has had 2 harrington rod surgeries and wore a brace from off and on from 2nd grade until after i graduated highschool.

I had been experiencing upper back pain but in the last year I developed severe lower back pain.

Yesterday we met with a neuro surgeon (Dr. Antezana at St. Vincent hospital in Portland Oregon) I have spondiliothisis (sp?) a slipped L5/S1 with other complications. I also have a fracture that he thinks i was born with (??) how that was never detected i do not know.

He informed us that eventually its going to get worse and the pain will start radiating down my legs and my legs will go numb. He says there is no doubt about it. Its just a matter of time.

He is going to try injections into the spine for short term, and says he can do a less evasive surgery to buy us some time. With scoliosis even that low he isn't convinced that will work or work for long.

But what it will come down to is MAJOR MAJOR surgery, where he will have to go in not only through the back but the front as well (how/why i have no clue, i was in too much shock to ask) It will require several weeks hospitalization and months and months of recovery. All this is only IF my cardiologist thinks i can tolerate the surgery as i have had open heart surgery for Tetrology of Fallot as well.

He says he can either do one surgery, and go back in a week later and complete it, or keep me on the table ALL DAY!.

I am terrified, i have two small sons and all this is just too much to fathom. I haven't stopped crying since we found out.

The dr. thinks we have a few years before it will become so painful that i will have to have the surgery.

Has ANYONE here experienced something similar? Has anyone had surgery through the front? What was the recovery time like? Did you have to wear a brace afterwards, what else should i know?

We are going to get a second opinion but I want to hear from others who may know what we are facing. I have never been so freaking scared in my lfe and am so upset over all this. Why on earth does all this crap happen to me? Haven't i already been through enough? I am just so sick of all this and don't know how much more i can take!

[babette71]

so sorry to hear of your situation. unfortunately there are many of us facing revision surgery after our harrington rod surgery. check out the yahoo flatback website for much needed support and info. at this time. my only advice for you is do not just let anyone do this surgery when the time comes. it is VERY complex and there are about a dozen who have revision surgeries under their belt. you are not alone. my best to you.
barb

[Susie*Bee]

Take a deep breath...

pleasemama-- Yes, it is something big--and at present it looms as something humongous and unmanageable, but you'll be able to handle it ok. There are many, many people who have had both anterior and posterior surgeries--either at the same surgery time or staggered. It is workable. You can probably search to read more, or I'm sure many will respond to this thread. it is usually noted as A/P surgery. I myself only had posterior, but was originally scheduled for both. I had a lateral listhesis between L2 and L3-- a stair-step effect that can cause your spinal cord to be compromised at some point, besides my scoliosis and rotation.

It's possible (entirely) that I don't quite understand the extent of what you'll be having done, but all of the scoli surgeries that I know of have been very major surgeries and require lots of recovery time. I don't think most of us have been in the hospital for weeks, though, although some moved to a rehab center for a few weeks post-op.

Your heart problem brings in a different twist entirely too, so keep us up to date on what is happening.

You'll be able to get through this. And there are so many supportive people on this site that will encourage you. As you said, your doctor will try to buy you a little time if needed. In the meantime, hang in there! It will all be ok--just a big challenge!

[leahdragonfly]

re: TERRIFIED

Hi Wendy,
I just read your post and had to reply. I am 40 and I live in Corvallis, OR. I was diagnosed with severe spondylolisthesis (grade IV) and scoliosis (double major curve ~33/32) when I was 13. I was a competitive gymnast at the time, and I had severe back pain quite frequently as a child, but no one ever asked, so I thought it was a part of being a gymnast! The scoliosis was detected during an exam, then everyone was shocked to se the severe spondylolisthesis as well. My orthopedist at the time (in CA) told me I would eventually need a 3-vertebrae lumbar fusion to stabilize the spondylo. I wore a boston brace for 2 years for the scoliosis, then had a fusion L4-S1 in 1984 at age 17. I know your case is probably different because of your previous Harrington rods. My fusion was done posteriorly without any hardware. I had to wear a body cast for 3 months, but I hear that is not done anymore. I was hospitalized about 4-5 days and recovered well. I had severe right-sided back pain with sciatica on the right prior to surgery, and now I rarely have right sided pain.
Try doing a google search for spondylolisthesis, I founds lots of info about it that way. What your doctor said about it being from a fracture...it is frequently from small stress fractures in the facet joints of the spine. I had that, and mine was probably made immeasurably worse by being a gymnast. Spondylolisthesis is actually a slipped vertebrae, not a slipped disc. I am sure you are shocked and very scared, I can only imagine, but I would recommend a second opinion too. I don't know any orthos in Portland, but the Scoliosis Research Society (www.srs.org) has a physician referral page that has at least a handful of listings for Portland.

Take care,

Gayle Kalman
mom to Leah, 6 y/o, diagnosed last month with 30* T/15* L scoliosis, considering vertebral body stapling (VBS) as Shriner's Philadelphia

[pleasemama]

Thank you for the replies. We are in the process of getting a second opinion on this.

I am so utterly devistated and depressed over it, its not even funny. I know i will have to have surgery at some point if my heart dr. ok's it but the thought of it is terrifying. I am 38 years old and have open heart, 2 spinal surgeries, 2 kidney surgeries and various minor surgeries so the thought of another one (or two) is not sitting well at all.

I will update if and when i find out more iformation.

Thanks

[cammaltby]

Pleasemama,

It is huge surgery, but take a deep breath. You have time on your side to figure out the future. My son was 7 when I underwent a two day anterior/posterior fusion to S1. Today, 3 years later I am doing fine, although I certainly attribute most of that to the skill of my very experienced surgeon. There are information resources and information and support from those that have been through your situation from those who have had the surgery your surgeon proposes.

As mentioned above, you might also want to check the Yahoo group devoted to post Harrington revision which has archived member stories available and a large, helpful membership, which co-moderate:

http://health.groups.yahoo.com/group/Flatback_Revised/

I know we have a very helpful member there, Kay, who underwent revison in Oregon. Also a number of patients in the NW find it worth the trip to UCSF for an opinion and/or surgery.

Take Care, Cam

[nzgirl]

Hi Wendy,
I understand how scared you must be feeling, it is a terrible shock to face such major surgery. I had anterior surgery in 2000, and then have been back in december and had posterior surgery due to curve progression. The rollercoaster that I was on last year after finding out was awful, and it felt really lonely.

You will find really good support here on the forum, and it is amazing to know that other people have experienced what you are going through, although everyones circumstances are different.

[pleasemama]

[/QUOTE]
I don't know any orthos in Portland, but the Scoliosis Research Society (www.srs.org) has a physician referral page that has at least a handful of listings for Portland.

[/QUOTE]

I did the search and the Dr. i was seeing was one of only 4 who came up for Portland that made me feel somewhat better. He comes highly recommended, my own physician send her husband to this Dr.

My husband doesn't understand why i want second opinions and is driving me nuts. he says i will just keep looking until i get an answer i want to hear which is not true at all.

Our main concern isn't over the back problems but with my heart complicating things. Hopefully i can get approval and we can also hold off the surgery until the boys are older and do not need as much care.


Nz girl lonely is the best way to describe this. My husband has had two lumbar laminectomys (sp?) but he does not know what i am feeling. I have had so many surgeries in my life i cannot imagine having yet another one. I often ask myself what the hell did I ever do, to deserve all this crap.There are days i can't take anymore and am just so sick of it that its not even funny.

Cam i will check out your group in a few days, I am just not up to it at the moment, but thank you for the invite. I am sure it will be very helpful.

I so wish these boards/groups were available when i was a child dealing with scoliosis, it would have helped so much. I always felt so alone in this, and although i wish no one else dealt with the same problems, i am glad that there is support now.

Thank you everyone.

[nzgirl]

Stick to your guns with getting a second opinion, I wanted to do that too with my surgery, but in NZ the options for scoliosis surgeons are very limited ( there are only a couple in auckland) and my surgeon is the most experienced and trained the other ones! I knew deep down that I wouldn't get the answer that I wanted, it was huge soul searching to decide to have the surgery. And, I felt very alone in the decision making. Plus, I didn't have good support from my friends.

You didn't do anything to deserve scoliosis plus tetralogy of fallow. Some days I feel really like I've been given a poor deal, but others I feel like I can cope, I'm strong. Because I have to work really hard to stay fit and healthy to stay on top of pain, I try and think about it as a way of motivating myself to do what everyone needs to do to stay healthy in later life. At the moment the positivity isn't really there, but I have my ups and downs.

I took the approach of going and seeing a psychologist to help me work through some of the fears of surgery, and help with the decision making... but mostly just to talk it through with someone that I didn't have to look after their feelings in any way, or put on a brave face for. I found it really helpful, and just went for the 4 sessions that my insurance covered. Aside from that, I had really good support (and still do) from the forum. The people in the revision category are fewer, but the first timers experience similar things anyway and are really helpful.

Keep us updated.

[pleasemama]

I am lucky that i have support of friend and famliy, but its still difficult. My husband wants me to talk to friends about what I am feeling but none of them understand. They just look at me with that total look of pity on thier faces and just want to smack it off LOL

I just thought all the crap was behind me and our lives were finally coming together again after years of hardship and then BLAM we are blindsided again. I am an incredibly strong person but i can only handle so much.

Talking to a physcolgist wouldn't help me, i can't open up like that face to face. I do great on message boards though so that is helping some.

Thankfully we have a while to make our decisions and get my heart tests done.

Right now i am dreading the shots. I do NOT do well with shots of any kind and have huge anxiety over them, so the fact that he wants to do them into my spine is not helping me. I wonder if i can get valium or something for the day of them as i will be an absolute hysterical mess on that day.

I just miss walks with the boys, and doing all the housework. I hate having to ask for help. HATE IT! this weekend was my oldest birthday party and it took me a lot but i did ask for some help from friends and it was so hard for me to do!

[SusanGP]

Pleasemama,
I think all of us on this forum know a lot about how you are feeling, lonely, scared, etc., etc., - this is a major surgery! My primary care doc here in Roseburg said to me a few years ago "You sure were delt one heck of a hand of cards" I used to feel like you do, "what did I ever do to deserve this kind of a body" Now I think about those who have even worse problems - paralyzed, blind, in a wheelchair all the time, cancer, etc., etc., when I start feeling like that. But I sure understand how you feel and I hope this forum will help you to feel not so alone. It is scary, but you will get through it even though you are overwhelmed right now.
I had anterior surgery on Oct. 15, 2007 and posterior surgery on Oct. 22, 2007. My surgeon is Dr. Robert Hart at the OHSU Spine Center in Portland, OR. He is great as far as I am concerned and I highly recommend him. There are several spine doctors there. Dr. Alex Ching did his fellowship under Dr. Hart and I think he is a good one too. This is my own opinion from my experience. I was in the hospital for 15 days but I know of others who were there for anywhere from 10 to 25 days depending on the circumstances. I wore a brace for 12 weeks after the surgery.
Take care, we are all pulling for you!

It wouldn't hurt to get several opinions before settling on a doctor for the surgery. I wish you all the best and will keep you in my prayers.

[pleasemama]

Susan thank you. I refuse to go to OHSU for any surgery every again, no matter how good the dr. is. I had kidney surgery there in 2003. The botched it and had to redo the surgery 2 days later. While i was there i had the most horrible experience i have ever had in any hospital. I was put in a room so small that my mom couldn't even sit with me. I had a roommate that had a nasty staph infection and should have been isolated to begin with. One night i vomited all over myself. I pushed the button for well over an hour before anyone came to even check on me. I was the most degrading disgusting experience ever! I had larygitis from where they improperly removed the tubes from surgery and scratched my vocal cords so i couldn't scream or call out for help. I will never forget the feeling as I laid there in puddles of my own vomit bawling my head off for help and was unable to get any care! The dr. i am dealing with now operates out of St. Vincents in Portland and i hope to be able to have surgery there if and when it comes down to it!

[leahdragonfly]

how are you doing?

Dear pleasemama,

I remember your posts, and have been wondering how things are going for you? Did you have the injections yet, did they help, did you find a doc for a second opinion?

I am going to have to have spondylolisthesis revision surgery at some point also, so I am curious how you are doing.

Take care,

Gayle