Help, I Need Somebody, Help, My Surgeon Won't!!???

S

Sam3

New member
I have been struggling with herniation L5-S1 since 2005. Began in spring of 05 with pinched nerve in neck. Without complete detail of latest MRI (worse herniation, severe compression of S1 nerve" DD at l4-L5, etc. doesn't matter- point is I was scheduled for surgery 12/06. Took pain meRAB, cleaned up house and probably scared myself out of surgery that my Dr. convinced me to do (and he is conservative said I had less than a 1% chance of healing- do I want to go on living this way?). After taking pain meRAB and much cleaning before surgery Pain better so didn't have surgery. (had 4 epidurals prior, PT , all conservative options possible). By May of 07 bad again. 3 more epidurals last week was last with methylprednisolone steroid 6 pack before last week's final epidural. (I've exhausted 3 for these 6 months) Still on meRAB and have been on Neurontin, mobic, etc. for last 3 years (also tore ACL in 2004) so LOTS of meRAB. Only now resorted to painkiller for last week as they messed me up when previously took and became too forgetful. (Thankfully my son is in boarding school now so I don't have to worry about him and remeraber all the homework, etc.). I am single Mom. Noone here but me. Very active and hard for me to lay in bed, sit still (no pun intended tho of course cannot sit for long and only when on pain meRAB) which I take at night. Used to be able to walk out pain - now just keeps recurring (butt and leg to bottom of knee). Thankfully no nurabness.

Sorry for verboseness but there is a point to all this if you can bear to read on. I am now not working, involved in much personal stress, son hates me and calls me "back lady" and have lost many frienRAB as they (as well as myself) hate having to deal with me. If it weren't for my son I would just 'fall' into the subway tracks- but I won't. Have found the latest cheap CSW as I can't afford good therapist and insurance doesn't cover. Am unemployed and have just about exhausted savings. Do not speak with family any longer and they are trying to gain custody of my son. (Just to name a few other problems.. most likely helping my disc to bulge further!)

Went to surgeon this week with new MRI. Sees me crying as usual and steroiRAB make me weep all the time especially after this last 6 DAYpack of methylprednisolone- but at least it made me hungry and I'm eating again! (I was down to 102 and my usual is about 115). He grabbed my notes and said let me look at questions. Don't know what he read (I had 3 pages of notes) but he knows I go on internet and he just sort of lost it immediately and said "you are not PYSCHOLOGICALLY ready for surgery. Go see a shrink and when they say you are ready..." Told him I just got a new CSW but that was it. he left room. Of course I wish I had the money to see a good psychiatrist to help me with all my problems....I have basically become a hermit and feel like I have lost the last 2 years of my life. Used to be active, bike ride, love going out, dating- can't bear the thought of being touched now - broke off my last relationship as he began complaining of back pain (but they just don't get it - I HAVE NO BACK ACHE AND WISH IT WAS JUST THAT!!) I have a very high threshold of pain, but REALLY AM SCARED OUT OF MY WITS TO HAVE SURGERY and now finally gearing up for it again - the biggest decision of my life and my surgeon won't do it!!! HAS ANYBODY EVER BEEN TOLD THIS?? AND HOW CAN A SOCIAL WORKER DECIDE FOR ME IF I AM READY FOR SURGERY? Who is ever completely ready and totally confident about surgery? Must I convince myself to be positive about it when I don't think I will ever be? And especially because I have tried every conservative method out there for over 2 yrs. now. This Dr. was my second opinion (first said immediately to operate from first MRI) and they are both at same hospital and both Orthopedic Spine Surgeons. The one who just refused me was referred to me by my old Scoliosis Dr, from over 20 years ago when I wore a back brace. (He told me he would not operate unless really necessary - now it's even worse and I'm psychologically not a candidate!?? and he was ready to operate Christmas of 06?? I was crying in pain then too!
ANY THREARAB ON PSYCHOLICALLY READY FOR SURGERY????
 
Hi Sam,
Welcome! I'm so sorry your having such a bad time and are in so much pain. I have played the dr. game fro many yrs before I found a good one. I was told it was all in my head once, that was before they even knew it was my back they thought I had MS for a few yrs.

You can find my history if you search thru my posts, I won't bore you with all that now. I can tell you that you DO need to be ready mind & body, it is a hard recovery and takes up to 12 months to heal completely. It is not to be taken lightly at all. It does sound like you have some major things going on in your life, I'm not so sure going thru a custody battle and back surgery at the same time is a wise move for anyone.

I hate to agree with the dr.'s but it might not hurt to at least consult with a psychologist about it. I have had 4 fusions on the same level in 3 1/2 yrs (they all failed) and one shoulder surgery in there too. You really need to have a clear mind going into this.

I do understand how you feel having suffered so long, I went from 98 to 03 before I even was told it was my back! then had first surgery in 04 so I do know about suffering for a long time without much that helped.

I will be praying for you dear, it is a hard road your on. I do hope you get the help you need soon and find relief from your pain.

God BLess

Carol
 
Sam, my heart and prayers go out to you! I pray that you will find "pain relief", soon. Pain really does take its tole on people. It not only affects them physically, but emotionally and mentally, as well. I, too, am a chronic pain sufferer. I was devastated on the 22nd of January (which was my first neurosurgeon appointment), whenever my neurosurgeon informed me that my condition (Degenerative Disc Disease) had spread to my cervical spine! He also stated that surgery would only worsen my condition and would only be used as a "last resort." Carol, may I ask you about your shoulder surgery? I was wondering what lead up to that. Thank you, in advance.
 
Hello. We all understand what you are going through. This does not just effect our backs but our minRAB and emotions as well. I think if you are now ready for surgery, you are going to have to jump through whatever hoops the doctor is looking for.

I dont think your doctor is going to accept the word of a social worker that you are fit for surgery mentally. You need to find a psychiatrist that will work with you to figure out what is needed to make you ready for surgery. Actually, ask your social worker to assist you with this.

You have to stay strong through this and not given in to what the pain can do, which is take over. Don't let it. Fight and get the help you need.

You hang in there.
 
Hi PT,
My shoulder surgery was a reduction of the end of the collar bone. it was microscopic with 3 small incisions (one stitch each). I was having such horrible pain I couldn't even lift my arm halfway up and could not hold any weight bearing items at all. It worked wonderfully but the recovery was very very painful, much more painful than the back ones were. Luckily the recovery time was not as long as the back ones were, I was also lucky because they were able to take off a good part of the arthritis that was on the end of the bone. They just got in there and ground down the end of the bone to make room for the tissue that was inpinged (i think thats right). They said the arthritis would eventually come back but it would take a while, many years I hope.

Thanks for asking. That was a rough year back surgery in OCT. shoulder in july another back surgery in nov. Now you see why I say I'm really donewith surgery for a long time, lol.

God BLess

carol
 
I agree with everyone concerning seeing someone. You are carrying a HEAVY burden on your shoulders (no wonder your back hurts - sorry I couldn't resist) and I highly recommend that you don't try to carry it by yourself. I won't bore you with the details but I recently tried to carry my back problems on my own and it caused me to sink into a deep depression and to have panic attacks. So I highly recommend that you find someone whom you can talk to whether it be a pastor - many churches have their own counselors on staff and they will offer you a service for a very low $$ amount or not charge you anything if you are unable to pay - or mental health clinic in your phone book - they sometimes accept prorated payments based on your ability to pay.

Only you will know when you are ready for surgery mentally and it sounRAB like you are on the edge of making that decision. Know that we all go thru many ups and downs while making this decision because no surgery is a 100% guarantee and that is very scary in itself.

Just know that we are here for your 24/7 so ask away any questions that you may have and several of us have nothing else to do so we would be happy to chat with you anytime.
 
sounRAB almost like my situation,only thing doc told me to loose weight cause a fusion will not take.someone like you need to be living with me we could help each other.
 
Sam, my heart goes out to you too......prayers as well. First off, I'd say if any doctor took my personal papers out of my hanRAB and then stated to me that I needed to see a shrink, that I was not mentally ready for surgery, I'd find a new doctor.

Sure any surgery is stressful, it took me 4 years to get myself ready mentally and physically before I was finally ready to face the fact that I needed and had to have done what I had done, and it was severe and extensive with a very long recovery, in fact there were complications that nearly took my life, one month post op I suffer issues with nerve pain, but I remeraber the positive reasons for why I did what I did to begin with......but your doctor had very little respect for you and how you feel......

Not sure where your insurance lies in all this, but I'd see about finding a referral for another neurosurgeon. I got really lucky both this time and when I had my neck fusion. Both had a great sense of humor, great standing in the medical field doing their jobs, they listened to me, listened to all mine and my husband's questions and this time he sent out my recorRAB and test results to three other neurosurgeons for their opinions, one was the doctor he did his fellowship under at Cedar's Sinai in L.A. before we finalized the plans for my surgery.

Now as far as seeing someone about how you feel about this........I was excruciatingly scared about my surgery, I still am about the recovery, about the unknown, how it's all going to turn out, but if you want to see someone, that should be about your choice not about a doctor who disrespects you.

Not to scare you, but I have Degenerative Scoliosis, I used to have just Degenerative Disc Disease, I never had scoliosis as a child, it is rare and unlikely to end up with this without first having had scoliosis.......Surgery is a last resort, I had 8 years of shots and pt, and epidural injections, years on pain medications......I was diagnosed 20 years ago with DDD L5-S1 L5-L4, it progressed through the years up through my L1-L2, then it began to affect my Cervical spine as well thus the Cervical Fusion C5-C7....my Degenerative Scoliosis set in in only 27 months.......so do not blow off what is going on with your back, had I addressed it 4 years ago, I might not have the roRAB in my back.........hugs to you, remeraber you are not alone in all this, we are all doing it together......keep you chin up.
 
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