L4-S1 Fusion Surgery??

[mb3343]

I have been suffering from back pain for 6+ months now. My lower back started hurting after a swim practice and has been getting worse since. I tried physical therapy for 2 months and it only made it worse. I have been seeing a pediatric orthopedic surgeon and his diagnoses is:
Congenital complete sacralization of L5 with incomplete segmentation of L4-5 at the inferior facets, greater on right. Degenerative disk disease at that interspace.
He has advised me to get posterior fusion with pedicle screw from L4-L5 (though it would really be S1 due to sacralization). He has said it should fuse well since it is already partially fused and there is a lot of bone in that area.

I recently saw an orthopedic spine doctor and he took a very quick glance at my images (CT, Bone, Mri, X-ray) and said not to get the surgery and it will get better with time though it is currently getting worse everyday.

I am looking for advise, experiences (especially with younger people) and anything else you can offer

Thank You
Marie

[Greg]

Marie,

Sorry to hear about your pain! And your difficult decision to make from the conflicting suggestions you received from the doctors. I am not a medical doctor and I cannot tell you what you need to do. You will find in this group that we can share experiences, thoughts, knowledge and a whole wealth of information but ultimately the decision you make should be something you feel confident and comfortable with and one that a doctor can agree on. I can understand what your going through. I am a 24 year old male (8 years of back pain) and I have painfully spent the last year weighing all my options as to what surgical treatment I will get as I am out of non-surgical options. I will be doing a anterior fusion from L4-S1 on May 28th. My condition is not the same as yours, I have 2 herniated disc stuck on my nerves. I have talked to MANY DOCTORS and spent several years trying non-surgical treatments before I went to the surgery. Have you tried anything other than physical therapy? Again I dont know much about your condition but I am researching now trying to educate myself on it.

Obviously the severity of your pain and the impact it is making on your life will dictate how long you can hold out on surgery while trying conservative treatments. I went out and got opinions on surgery for my back from 5 doctors (orthopedics & nuerosurgeons) before I felt confident enough that I was choosing the right option for me. I spent so much time researching EVERYTHING about my condition and treatments on the computer to the point where I feel like a doctor talking about it

Spinal fusion is a BIG DEAL and it's not the type of surgery you can "CTRL-ALT-DELETE" and start over if it doesnt work. I hope your pain isnt too severe now and you can try other non-surgical treatments. I literally tried just about everything out there for me before I went down the surgical path. Unfortunately it put me pretty deep in the hole financially trying so many different treatments. But I would rather be short on cash and have found a way to fix me without surgery rather than jumped to surgery too soon and made a decision that might not be the best one. Granted I am getting surgery now but I know with 100% confidence that the decision I have made is the right one as I have ruled out all others.

My advice for you: Take the time to do your homework and become an expert on your condition. If you can and your doctor agrees with you (and if there are any) rule out all your options/conservative treatments before going to surgery. Again I'm not an expert on your condition so I dont know wether this can be fixed with anything but surgery but I would be sure to find out. And get second, third, however many opinions it takes to make you feel confident and comfortable with the decision you make. In the end the decision you make should be one that YOU have decided on and feel comfortable with

Sorry to write you a book here....I tend to get long winded at times. I wish the best of luck to you and hope you can find the information you need to make the right decision for you back. I hope I have been at least the slightest bit helpful to you. Keep me posted

[Fuzzy]

I agree with Greg that it depends a lot on your pain and if you can handle the pain or take medications. It is always a good idea to try to avoid surgeries unless it is absolutely nessesary both for your health and your well being (quality of life). I don't recall what the doctor has told you but there is always a chance of no improvement or even more pain from surgery.

[ajj1001]

Spinal fusion is a BIG DEAL

My advice for you: Take the time to do your homework and become an expert on your condition. If you can and your doctor agrees with you (and if there are any) rule out all your options/conservative treatments before going to surgery. Again I'm not an expert on your condition so I dont know wether this can be fixed with anything but surgery but I would be sure to find out. And get second, third, however many opinions it takes to make you feel confident and comfortable with the decision you make. In the end the decision you make should be one that YOU have decided on and feel comfortable with

... just wanted to second everything that greg said.

If fusion is the right solution then getting prepared beforehand is vital as its an awkward op to deal with post op.

[Katie]

I agree with everything said above. But I also want to add something.

Please don't put yourself in the position of needing so much pain medication for so long a period of time that it will be very difficult to get off it. The medications are hard on your health and have their own sets of problems. I recently had surgery after years of waiting for treatment, after years of every conservative alternative therapy out there, after years of taking an enormous amount of medication to barely cope with the pain.

When I finally had surgery just under two months ago, the surgeon was upset at the level of medications I have been and still am on. He said his patients would normally never have been given that amount of pain medication, and when I asked what the alternative was, he simply said that in his country, I never would have been left to suffer so long. (I had to go out of country for my surgery).

It will take a lot longer than I hoped to get off the drugs, but it is slowly happening. I'm on less than half of what I was previously taking. They are both a blessing and a curse. This is just one more thing to take into consideration when deciding all of your options, whether it is continued conservative treatment or surgery.

[mb3343]

Well just a general update: my doctors are now considering rheumatoid arthritis, RSD, and some connective tissue disorders. I had the blood tests last week and some came back positive so i am set to see a rheumatologist next week. I do not know how this will affect my back and potential surgery.

Greg: i have also tried some chiropractic stuff, acupuncture, and some mild pain meds (tramadal and one other i don't recall the name of) and they have done nothing. Thank you very much for the informative response. One question: why did u wait sooo long for the surgery?

Fuzzy: I have taken some pain meds in the past and they do absolutely nothing for me though i have never taken any of the really strong ones

ajj1001: If i were to have the surgery what do u recommend doing to get ready?

Katie: I am trying to avoid meds at all costs

Thank you everyone

[ajj1001]

ajj1001: If i were to have the surgery what do u recommend doing to get ready?


Thank you everyone

Spend a couple of days going around the house without bending or lifting and see just what you can achieve and change accordingly. The sooner you can be independent the better you'll feel.

List from WPKat (thank you)

SURGICAL CHECKLIST

PRIOR TO SURGERY

Surgeon

Make sure you give your surgeon a list of all of the medications you are currently taking, including dosage amount;
Discuss all medications given for aftercare (i.e., pain medications, muscle relaxers, etc.)
* Type, dosage and schedule for taking them;
* Side effects and interactions;

Anesthesiologist

Discuss any known allergies;
Request anti-nausea medication;

Medical Directives

Consider preparing an Advance Healthcare Directive, HIPAA authorization, etc.

Caregiver

Arrange for care – someone to be with you for most of the first week post-discharge;
Provide list of medications to caregiver;
Give all doctor names and numbers to caregiver(s) as well as next to your bed;
Put together phone numbers of all concerned family members and friends on one sheet;
Car keys and house keys given to appropriate caregivers;

Minor Children

Arrange care for your minor children;
Prepare a contact list of medical providers for your children;
If caregiver is someone other than your spouse:
* Consider preparing a power of attorney for medical emergencies;
* Update contact list at their school;

Pets

Arrange for pet care;
Buy extra pet food to have on hand;

Financial

Prepare checks ahead of time, made out to the payee with a preaddressed, stamped envelopes or schedule online payments in advance;
Have extra cash on hand for caregiver and/or family members to run errands;

Personal Care

Hair cut;
Shave, wax, pedicure, manicure, etc. right before surgery:
* If you have fake nails, consider removing since as they may fall off due to anesthesia
Dentist;
Update prescription glasses, both reading and regular:
* You likely won’t be wearing your contacts much in the hospital or after surgery;
All grooming and personal supplies waist high to avoid reaching or bending;
Organize essential items at home to be within reach (i.e., telephone, shoes, etc.;

TAKE TO THE HOSPITAL

Clothing and Personal Items

Button up pajamas;
Back scratcher (cheap bamboo – invaluable);
Bathrobe;
Hairbrush and/or comb;
* For long hair, elastic bands to tie back
Toothbrush and toothpaste; Mouthwash;
Facial wipes; Body wipes;
Hand Cream; Facial Cream;
Lip Balm;
Lavender linen spray or febreze;
Loose clothing to come home in:
* Baggy shirt and pants; underwear; front button top; socks;
comfortable, safe shoes
Magazine, crosswords, notepad, pencil;
Glasses;
Laptop – a lot of hospitals have wireless access in the rooms

AFTER CARE

Medical Supplies

Wound dressings per doctor;
Thermometer to check temp after surgery;
Microwaveable hot packs –great for aching shoulders, etc.;
Heating pad;
Cold packs in freezer prior to surgery
* mix 1 cup rubbing alcohol with 2 cups tap water, put into a quart size freezer bag; freeze – to use, put into a gallon size freezer bag, wrap clean dishtowel around it, place on affected area
Small, lightweight pitcher for water next to bed;
Paper towels near bed;
Small wash basin near bed;
Small garbage bags nearby;

Nausea

Look up OTC medication to help avoid nausea;
Saltine crackers;
Small bucket for nausea next to bed;

Constipation

Drink plenty of fluids (at least 90 ounces per day);
Eat food or drink fluids with added fiber;
Microwave a 1/2 cup (4-ounce) of prune juice and drink it within 1 minute;
MiraLAX (tasteless and odorless – drink daily);
Colace (stool softener – take every day);
Fleet or suppositories (use only when every else doesn’t work);

Prescription medication that blocks the constipation side effects of opiate medication:
Relistor (methylnaltrexone) Drug Side Effects, Interactions, and Medication Information on eMedicineHealth.

Ambulatory Assistance Items

“Turning sheet” strip of heavy fabric that you put under you so that you can have a significant other pull to turn you over as needed, particularly good for those first few days.
Walker and/or cane;
Wheelchair, if necessary;

Items Used to Avoid Bending and Lifting

Think about placing every day items at waist height even if it means storing on counters;
Grabber/Picker – preferably 36” long; one for in the bedroom and one for in living room ($10 – $25);
Long handled shoe horn ($5);
Grabber-like thing to pull on socks with, or think about wearing flip flops or open-backed shoes;
Towel that lies flat on the bed beside you. Put items you may use on top then just pull the towel toward you to retrieve items you can’t reach;
Bedtray;
Bell, cell phone or walkie talkies to contact caregivers;
* Phone, iPod and all other chargers within reach
Remote controls for TV, DVD, etc.
* Obtain extra batteries for electronic items;
Plastic containers to hold and organize items you need while confined to bed:
* Also to use after mouthwash or for small trash;
* Put all the reading materials, crosswords, pencils, etc. in one. Put personal cleansing items in another;

FOOD

Soft foods

Yogurt; frozen yogurt; ice cream;
Popsicles;
Jello cups; Pre-made puddings or tapioca;
Protein bars;
Multigrain, high fiber, high protein cereal;
Microwave oatmeal (with fiber added);
Bananas;
Chicken stock;
Microwave dinners;
Frozen pasta entrée;
Things to eat quickly due to nausea;

Drinks

Plenty of water at your bedside;
Gatorade; Powerade;
Coke, ginger ale, other soft drinks;
Yogurt drinks;
Ice chips to help dry or sore throat;
Flexible, long straws;

Vitamins

Double check with doctor regarding use of vitamins and/or supplements to avoid any interactions with the medications you are, or will be, taking.

CONVENIENCE ITEMS

Shower and Bathroom

Shower stool or chair to sit in shower with soap, shampoo, shower gel on another chair for easy reach;
Non-slip mat for shower;
Hand shower;
Long-handled back scrubber;
Nylon bath poof instead of wash cloth; easier to hold;
Exfoliating skin towel;
Toilet riser with or without side handles ($15 – $25);
Bedpan, if necessary

Personal Items

Deodorant body wipes or wet wipes for freshening up;
Pre-moistened facial cleansing cloths;
Powder – Shower to Shower or other;
Face cream;
Body lotion for itchy skin;
Lip balm or chap stick;
Mouthwash;
Throat lozenges and chloraseptic spray;
Kleenex;

Clothing

Bathrobe; Front button pajamas – numerous sets;
Slippers – not too loose with good soles;
Pull on pants:
* Make them a size larger so they don’t bother your incision(s);
* Check elastic so it’s not too tight;
Front buttoned shirts or zipper tops;
Jogging suits;
Camisoles or tee shirts to wear under brace, preferably cotton so it breathes;
* Ladies – try the ones with the bra built in
Slip on shoes:
* Croc shoes with the open back – they are ugly but they are easy to get on, provide great traction, comfortable to wear and were recommended by the hospital;
Soft socks:
* NAP socks from Brookstone are awesome and keep your feet warm at night ($20/3 pairs);

Comfort Items

Lots of pillows – body, small, wedge, cervical, etc.;
3” memory foam mattress topper pad ($100);
Plenty of sheets, pillowcases, blankets, washcloths and towels on hand;
Plenty of sheets, blankets, pillows near a favorite recliner or sofa;
Linen spray to freshen sheets and pillow cases (lavender scent to relax and help with sleep);

Computer

Lightweight notebook computer with wireless capability;
If you are planning on much reading or computer (laptop) work post-op, consider a stand that adjusts in position and height like a hospital bed tray:
* Brookstone ($150) or less expensive ones ($60 – $70)
* Make sure it will fit under your favorite chair, or
* Notebook bed tray

Phone

Cell Phone and charger near the bed:
* Cell phone with wireless Internet access (Blackberry, Treo, iPhone, etc.)
* Obtain a wireless or blue tooth adapter for “hands free” talking

Music

iPod, headphones and charger:
* Update play lists;

Reading Material

Books;
Magazines:
* Consider obtaining a book light:
Audio books;

Games

Crosswords;
Sudoku;

[Greg]

Greg: i have also tried some chiropractic stuff, acupuncture, and some mild pain meds (tramadal and one other i don't recall the name of) and they have done nothing. Thank you very much for the informative response. One question: why did u wait sooo long for the surgery?

I wish I had a better answer but in the end it boiled down to the insurance company. Since my back pain started at such an early age it took FOREVER to find a doctor who believed me that something wasnt right and I hurt really bad. From that point after we exhausted all conservative treatments then I "TRIED" to get surgery. Insurance company denied ADR so I figured time for fusion....they denied that too! Dont know why when 6 months later they approved it after I had found a clinical trial to do it for free, "if the insurance wouldnt pay" and now rhey decided they will....could have saved several more months of waiting. Oh well, I've got a surgery date now so I guess I should stop complaining so much

My biggest delay in getting surgery was the insurance carrier playing god and me like a puppet.....I dont like them very much.