Scoliosis and Spinal Fusion Links:
SCOLIOSIS SURGERY: Setting the Record Straight" -- article in Quest Magazine, MDA.
Websites on Scoliosis:
Spinal Fusion Pictures:
National Scoliosis Foundation
Scoliosis Research Society
(Lee Stricherz's spinal fusion pictures)
Back View post-surgery
|An Informal Spinal Surgery Guide - Two Parents' Perspectives
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Below is a summary of Brianne's "Harrington" rod surgery experience written by Paul Konanz, her father, intended to help others evaluate, plan and anticipate a similar experience.
Any opinions or advice offered are based both on this one FA episode and average direct and indirect hospital exposure over his 54 years; please do not take it as gospel, at most let it be a flag to you to ask further questions.
Additional comments are from Valerie Bennett, relating to Phillip Bennett’s experience in January of 2000 at the age of 15½.
Six Months Before(evaluating need, x-rays, choosing a surgeon)
Four Months Before (making the choice, first visit)
One Month Before (pre-op visit)
The Operation Day
Intensive Care Unit (ICU)
In The Ward
The Brace Experience
Or the Cast Experience
First Month's Recovery
Longer Term Recovery
|Six Months Before: (evaluating need, x-rays, choosing a surgeon)
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- Do you need the operation? Brianne had gone through the back brace and chiropractic medicine phases until her spine matured at roughly 16 years old when her single curve was at 35 degrees. FA'ers' scoliosis usually continues to progress at some unknown rate so Brianne essentially ignored the curve until she felt/saw her shoulders become uneven, saw a crease in her side, started feeling an ache in her side and started losing her balance in the direction of the curve. An x-ray confirmed a 45 degree curve with some 3 dimensionalism to it. Because 1) she knew it would get worse, 2) surgeons like it to be "at least" 45 degrees before doing surgery, and 3) the coming summer fit into her 3-year plan best, Brianne chose to have the surgery.
- Timing is an important consideration, and there has been some discussion about whether the surgery -causes the FA’er to go from being ambulatory to being wheelchair-bound. There have been cases reported in this group where the FA’er never recovered all their strength and never got back up on their feet. However, it is my observation that, if the surgery can be done while they are still on their feet, it has a positive effect on their recovery. Being able to stand prevents pain and difficulties with aided-transfers with a VERY sore back, and speeds up the recovery of the digestive system, which was extremely painful for both Brianne and Phillip. They are up and around sooner, minimizing the atrophy which results in the loss of strength. Phillip’s surgeons operated on a 13-year old girl the day after him, and she was beside him in the ICU and the pediatric ward. Hers was idiopathic scoliosis (not associated with a disease or disorder), so she could (and was made to) stand 2 days after the surgery. Her recovery was remarkably faster than Phillip’s. Phillip could not stand on his own at all, and found being helped to move extremely painful – so he wouldn’t move, and the first few weeks were extremely difficult. However, I am pleased to report that he did regain ALL his lost function and muscle tone, and has even gone on to build some additional upper-body muscle tone, so it is not inevitable that the surgery cause unrecoverable atrophy.
- The other timing considerations which are important to the surgeon are the extent of curve (the greater the curve the longer the surgery, the longer the recovery, and the less correction achieved), and lung function. The patient will be given a respiratory function test (which measures volume and force of breathing) to insure their lungs can withstand the anesthesia. There is one child in our group who’s scoliosis is extremely advanced, but cannot have the surgery because his lung function is so low. So you don’t want to leave the surgery too long.
- Be prepared that the x-ray lab will not have the right safe seating for your child. I was amazed. We both had to advocate for her safety (not falling over/off and shielding for the pubic/breast areas) and for getting good x-rays (lying down is not good enough)
- Put some thought and study into the maximum number of x-rays your child should have and then who should take them. We had a set (3?) taken at home to verify the 45 degrees but then had to repeat them for both surgeons. Why? The local x-ray facility could not get the single neck to pelvic shot the surgeons want. Then the prone position didn't show the curve realistically. Finally a stretch xray was needed to suggest how much curve correction might be possible.
- I wound up supporting Brianne during most of the shots, some with and some without shielding (you get to the point where you say "Just take the shot!"), so you need to decide how much you care about x-ray exposure.
- We had similar difficulties with x-rays. A prone x-ray is not accurate. They want them standing. That was extremely difficult with Phillip because he, too, was already in a wheelchair. When the whole ordeal was over we had an x-ray technician solve the problem for us. She used a full-spine film, and placed the film cartridge between Phillip’s back and the wheelchair back, all the way down to the seat. She exposes the film from the neck to the pelvis (remembering to keep zippers out of the shot and protect the genitals), and Phillip leans back against it for stability. We have had fantastic, x-rays taken this way.
- Choosing the surgeon can take a long time or a short time. We chose to ask several FA'ers that had rods who they chose (and didn't choose!) to establish a starting field of candidates. We also asked for recommendations from our GP and our neurologist.
Then we checked who
* was best known,
* had the most current experience (how many rod surgeries per year over how many years),
* had operated on FA'ers.
We had resumes or "pedigrees" mailed to us on our final alternatives, and finally we set up an initial appointment with the finalists to interview them and learn more about the hospital facilities they would use.
- In our case, we belonged to Kaiser Permanente, an HMO, so we could not ‘shop around’ to the extent that Paul describes. However Phillip’s orthopedist referred him to a pediatric orthopedic surgeon within the health plan who specializes in higher-risk scoliosis surgeries. I did some checking around and found he had an excellent reputation outside the plan. When we met with him he demonstrated a surprising knowledge of the concerns and risks associated with neuromuscular disorders, and we were pleasantly surprised. Had we not been we would have asked the health plan for options.
- Most surgeons fill up their calendars 2-4 months in advance so finishing the interviews needs to happen early or you may be forced to chose a surgeon more on availability than first choice. We did some web searching on "Harrington" rod surgery and instrumentation so we would not be completely knowledge-less (ignorant) in the first visit.
- The interview was our face-to-face opportunity to learn more about the procedure, the doctor (technical and manner), and the facility. Have your questions written and review them together (family/friends) beforehand. We handed the doctor the list and said go for it. We should have asked more about the facilities because it turned out they were about to move into a brand new facility and so were not replacing/repairing much of anything in the old facility - more below. Bringing all the x-rays taken to date is important; the doctors can get a sense of progression and may save a x-ray. You can borrow them from whoever took them.
- Not all scoliosis surgery uses "Harrington" rods, although they use some kind of rod system with different methods of attachment. I have seen 5 or 6 scoliosis-surgery x-rays, and it surprised me how different the hardware installation methods were. In Phillip’s case he has two vertical rods, each with a natural curve to them when viewed from the side (I thought they would be ‘rod’-straight), which are hooked to the vertebrae at the top, and screwed directly into the larger lumbar vertebrae. They are also anchored to each and every vertebrae all the way down with wires that look like pairs of little wings on the x-rays. In two years Phillip has had no discomfort from the hardware.
- Idiopathic scoliosis surgery is sometimes done both from the front and the back. Phillip’s surgeon stated that he would not compromise Phillip’s already-weak diaphragm (a symptom of FA) by going in past the lungs at all, and would do everything from the back. He also suggested that they not take the necessary bone grafts from his hip, which is sometimes done, because that would cause additional pain and recovery for another wound. (The surgery required that they remove all the disks and fill the spaces between the vertebrae with bone, so they fuse together.) He recommended donor bone (which has been sterilized to remove risk of rejection and traces of blood.)
- Be prepared for the surgeon to tell you that some decisions will be made on the operating table. One of these decisions may be exactly how far down to fuse. Another is how much donor bone will be necessary. Even whether or not they will cast the patient after surgery they may not be able to tell you in advance. They do not have a feel for the bone density, muscle tone, etc. until they are actually in there.
- Who to chose? Here are some criteria, not in priority order and not a comprehensive list. A family discussion of priorities should be done at least to get a feel for what's important.
- Quantity of surgeries per month/year.
- Reputation of the surgeon.
- Recent training/seminars or teaching at seminars.
- Active in pushing the frontier of rod surgery?
- Manner, style, "bedside manner".
- Surgery scheduling convenient?
- Facility good?
- Support staff good (and efficient)?
- Prepare for School Absence. Provide your school with the surgery date and anticipated absence from school. (Plan on a minimum of two months.) They should make arrangements to have teachers come to your house to provide instruction. Also make arrangements for an aide for the period after your child returns to school if he/she is in a wheelchair.
- Again come with written lists of questions. You won't remember them all during the day. Plan for a long day (4-6 hours) as you are shuttled around to meet and talk with all the functions that will deal with your child. This is your day to learn about the details of the operation, procedural details that will keep you clued in during the operation on whether things are going really right or maybe not so optimally.
- As the various departments explain their role don't let them use words or acronyms that you don't know. Ask for the definitions.
- Explore their understanding of FA and what that implies as part of the operation/recovery procedure.
* They said they would "wake" Brianne up during the operation to have her wiggle her toes (nerve damage test); Even on a good day she can't wiggle her toes, so what else would they like her to "wiggle"?
* We really pushed the anesthesiologist about FA and how the anesthesia would affect Brianne. Unfortunately we didn't have definitive FA information but they were sensitized enough to hit the books before the operation, and they called the day before to talk to us specifically about FA and meds.
- If your FA’er has a slight build or a relatively short distance on the back between the shoulder blades ask about the size of the hardware to be installed and the chance for interference when the shoulder blades come together. Brianne had a second operation two years after the first to remove the hardware because of continuing sore spots between her shoulder blades.
- Specifically ask the doctors to describe the top 5 (you pick a number) most common problems that might arise during and after the operation and what the treatment plan usually is for them.
- Specifically ask about "paralytic bowels".
* It is common that after a surgery where the patient is "put under" the patient wakes up but the bowels do not. Over a relatively short time (1-2 days) gases develop in the stomach cavity that cause stomach distention and resulting pain (not discomfort, pain!). For ambulatory folk it can take up to several days for the bowels to wake up; the doctors/nurses get the person up and walking to stimulate the stomach muscles/organs. For Brianne it took 6 days with 2-4 (the memory blurs) of those days having a tube up her nose into her stomach pulling a vacuum to help evacuate the gas! Her stomach was stretched like a watermelon; her belly button flattened out! I emphasize this because she had excruciating pain that may not have needed to be! Because Brianne is a wheeler they did not want to risk lifting her and so it was several days before they put her in a chair to help stimulate the stomach muscles.
* The doctors had released her to "soft foods" before they should have. If we had known about paralytic bowels we certainly would have challenged the decision; instead, I went down to the cafeteria for split pea soup and she ate half a bowl of it. I am sure it helped compound the problem.
* We asked before the operation about cleaning out her system the night before or the morning of the operation; not needed was the answer. Knowing now about this I would have insisted on an enema; not only would it have helped somewhat to minimize the gas problem but the first post-op BM would have been easier
* Make the doctors speak directly to this condition and what *will* their strategy be to prevent it, and if not preventing then to treat it aggressively.
- Get lots of handouts/pamphlets that talk about all aspects of the experience.
- On the operation morning how *do* you get to the check-in place?? If the hospital is not in the same building, get directions and drive by *before* the morning of the operation. How do you get into the building? If you are to arrive at 5:30am (as we did) will all the doors be open? Who will tell you where to go once inside the building?
- If you have a service dog start greasing the skids to have the dog stay with the FA’er in their room. Brianne had Jason in her ICU room and in her ward room during her whole stay. We organized that on the spot with the ICU nursing staff when Brianne went there from surgery. Bring a pad for the dog to sleep on; the floors are cold and hard. It is the call of the nursing staff so have a backup plan if the dog is not accepted.
-Advocate to the staff that you *really* would like to insure your child goes into an orthopedic ward and not into some other one when they come out of the ICU. Other wards are clumsy and more ignorant of proper moving techniques for spinal surgery patients. Care will probably be better in an orthopedic ward.
Because of this recommendation from Paul, I asked Phillip’s surgeon about having Phillip transferred to the orthopedic ward after ICU. His surgeon’s reply was: "The best nursing care in the hospital is in the Pediatric Ward" so we didn’t dispute his recommendation and Phillip was transferred to the pediatric ward. If your child is under 18 and eligible for the pediatric ward, it is a more nurturing environment and VERY parent-friendly.
- Don't stay up half the night before! You or the FA'er.
- Don't underestimate how much time it will take to get ready that morning nor how much time it will take to drive to the hospital. It's better to be early and wait than late and have the operating staff rush!
- Be supportive of the FA'er; they are directly facing probably their biggest surgery and the prospect of a long slow recovery. Submerge your own edginess and be sensitive that morning to what they need as they head toward the surgery door.
- A few people only are usually allowed into the pre-op room. Focus attention on the FA'er and their needs; don't get into a gabfest that does not include the FA'er. Brianne had a book to read; something small and easy is good to fill in the time.
- Only one person was allowed to go up with Brianne to the ready area; who shall it be? For us mom and dad were left behind and a boy-friend was taken. She went in about 7:45am.
- They said the operation would be around 4 hours and 2 more in Recovery; she would be out about 2pm. How about 5:30pm? I guess we sensitized them pretty well; we assumed they kept her the extra time in Recovery to insure she was coming out of it well. Don’t get nervous if it runs over by some hours; the doctors’s time estimate is just that, an estimate.
- Bring plenty of stuff to do in the waiting room and maybe a pillow as well.
- Phillip’s father and I were allowed into the Recovery room as soon as Phillip was off the ventilator and breathing on his own. I have to warn you, that was an overwhelming sight. He was completely gray and stone cold. Only the beeping instruments all around him told me he was actually alive. They were blowing warm air under the blankets to raise his body temperature. The surgeon popped in to check on his recovery, and gave us the ‘spare parts’ from his hardware as a souvenir. It was then that he was able to report to us that he was very happy with the way the surgery went, that Phillip didn’t need any blood, even the pint he banked for himself, and the final decision on where to stop the fusion. (T4 – L4.)
- I'll make the comment now that applies to a substantial portion of the recovery time; there is a high probability that the FA'er will lose substantial function after the surgery and that some or all of it will come back slowly during recovery. In addition the body brace they must wear prevents some function and inhibits other functions. Brianne was as helpless as a baby for about a week, and even after that most things needed to be done for her. For instance it was about 3 weeks before she could scratch her nose independently. I was surprised her function came back so slowly. She was on light to medium doses of morphine for the first 2 weeks and then 2 Vicodin every 4 hours for another week; that probably inhibited the coordination a lot.
- We both stayed in Brianne's ICU room that night (and the dog). The nurses were great but could not be available for Brianne's comfort as much as she needed. I would suggest you plan on that.
- I cannot stress enough the importance of having one parent (or knowledgeable parent substitute) with the patient around the clock, 100% of the time they are in the hospital. Even in the ICU with a high nursing ratio the staff changes every 8 hours and they cannot possibly make themselves familiar with the special needs of the FA’er. Twice we had a nurse try to get Phillip to stand. He was not conscious enough to say anything, and if one of us had not been there they would have helped him to his feet and let go. In each case the nurse was mortified when they discovered what they almost did, but that wouldn’t have helped after the fact. They had Phillip on self-administered IV morphine, but he didn’t have the coordination or strength to find and press the button for the dose, so we had to help him with it. When he needed a dose he needed it NOW, and not when a nurse was available. Plus, the nurses ‘expect’ the patient to be able to self-administer, so it is not something they expect to have to monitor. Most of the time the staff assumed that Phillip was an otherwise healthy teenager having scoliosis surgery. We had to constantly bring to the attention of the staff that he had other complications. We never had a conflict with the staff; we just needed to be there to help them know how to care for the patient. Quickly they gladly allowed us more and more involvement, which freed them up to focus on other duties.
- When the spine is fused turning the patient is done by "log rolling"; that is, the body is rolled side to side as one unit, the legs and head must turn in unison with the trunk. Otherwise it hurts a lot and it’s counterproductive for the proper healing of the spine. This takes two people, even sometimes three if the neck muscles are rigid/sore as Brianne's were. It cannot be done safely by one person.
- The nurses were very supportive. Anything they could do for Brianne they were on it immediately, and for us they shared their coffee, made juice available, etc. Our proper challenge was to create a partnership with them and not a power struggle.
- Watch the medicines! We had written down that Brianne used several medicines on an as-needed basis; all of them were prescribed for daily use in the ICU; we interceded as the nurse was about to give them to Brianne, and we followed her back to the nurses station to review all the medications for what, how much, and how often to ensure we agreed.
- Beware of the muscle relaxant they may administer to the patient. In preparation for trying to get him to sit up they gave him a dose of muscle relaxant commensurate with his weight (to prevent painful tensing up and muscle spasms)– and it literally knocked him unconscious for 24 hours! Shortly afterwards another parent from this group posted that the same thing happened to their child. The staff needs to be informed, before they administer any medications, that they may have an unusual or exaggerated effect on the patient. If I were in the same situation now I would ask that they administer a half dose, and monitor its effect.
- The first advocacy question in the ward transfer is " is it the orthopedic ward?" If not, why not, and can we do something about it??
- The second advocacy issue is getting your child safely from the ICU bed to the ward bed.
* Bed to bed transfers must be done by qualified people using proper techniques and good judgement. The ICU nurses took charge of moving Brianne to the gurney (mobile bed) with our close supervision and help. Before any movement was allowed (by us) we verbalized exactly how we would do the transfer. Four people are needed; on either side to control the lift and move of her trunk, one at her head to move her head in unison (later we figured out how to pull her pillow along in the transfer to move her head) and one to lift and move her legs in unison. A short extra sheet (I think it was called a transfer sheet) was kept under Brianne to facilitate both bed transfers and to adjust her position in the bed, including body repositioning side to side.
* Beware of the people that roll the bed from ICU to the ward; they may not be qualified to transfer spine operation patients! It takes finesse and sensitivity to avoid hurting the person. Even the qualified people can get rough. When we got to the ward I told the "rollers" to wait and I got the nurse. She got a husky male attendant who moved me out of the key transfer position and proceeded to "throw" Brianne during the transfer. Instead of barely lifting her off the gurney and slowly moving her over to the bed he lifted her higher, half lost his balance, and bounced her over to the bed. Brianne was traumatized; it took several hours for her to almost regain the comfort level she was at before the transfer.
- Will you stay 24/7 with your child? We did with Brianne. I suggest you plan on it. As I stated above, Brianne lost substantial function with the surgery/brace and needed at least one person there 24/7. If you stay overnight the cardiac chair (it folds flat for transferring and then up into a chair) is great as your bed; much better than the 3 chairs pulled together we used the first several nights.
- I way underestimated how much time to take off work; I thought 3-4 and it took 9 days.
- How to keep them occupied? Brianne's vision went triple and blurred so watching TV was not an option, and any physical effort (cards/game die)was not realistic; her mother (and I a little) read her books. It was 8-9 days before she could watch TV.
- The hospital has throw-away pillows (would you like to use some sick person's pillow after them?) and we used a bunch of them; bring a couple leaf garbage bags to take them home in. We used them: 4 under her knees to control how high, 1 to keep the heels off the mattress, 1 to keep the knees from banging/touching together, 1 each under the elbows for positioning/comfort, 1 under the head of course, and 6 or so to brace the back when she was lying on her side.
* The body brace is like a turtle shell; it has a custom fit front and back that goes from just below the collar bones down to the top of the thighs and from the top of the shoulder blades down to the tail bone. Brianne has to wear this 23+ hours per day so a proper fit is really important. The hang-up we had was the distention of Brianne's tummy prevented a good fit; she just got a prescription for a new one because it bothers her so much.
* The cast for the brace is made usually 1-2 days after surgery right in the bed; they do have to roll them all the way over on their stomach to get the back. This IS painful.
* Bring 2 or 3 men's sleeveless undershirts to wear under the brace; the hospital usually only provides one. You can get a good description of them on your 1-month-before-operation visit.
* Since you are on your back during the casting process, for ladies I suggest wearing an old bra that will help suggest your upright breast shape; otherwise the (mostly male) orthotics folk will have to guess how much of a bulge to put in and they aren't good guessers.
* Brianne had to push pretty hard for a balance between personal comfort and the orthotics folks sense of proper fit. The line in front of the shoulder going into the arm pit, the length of the brace going into the thigh, and the tailbone brace piece pressing into the flesh were the main problem areas for Brianne.
- Be clear with the surgery team what the limitations on movement are to be. We had differing opinions from several doctors, the PT, the OT, and a few nurses. Turned out she could have moved around more had we understood better.
- In Phillip’s case they molded a full-torso cast on him about 3 days after the surgery. I have to say this was the worst experience of all, and I can’t see any way to prevent that. To ‘wrap’ him with the cast material (not plaster anymore) they literally suspend him in a special, scary-looking apparatus that allows them to wrap continuously. This was the only time Phillip cried throughout the whole experience. Before they get the patient out of bed for casting, an x-ray, or anything else, be sure they have the largest allowable dose of morphine immediately before. (The nurse can override the self-administering system and manually give a double-dose.)
- The cast may need to be modified or cut down in places for comfort. (Hip bones, arm pits, etc.) There is no reason for them to be uncomfortable. The advantage of the cast, especially for a patient that is in a wheelchair full-time, is that the parent can assist in transfers by using a bear-hug technique that would be impossibly painful without the cast.
- We borrowed a big old soft seated, soft-suspensioned car to get Brianne home because she was very sensitive to minor jarring. She reported even the acceleration of taking off from a stoplight hurt. Be sure to take the meds (Vicodin for Brianne) before leaving the hospital. Brianne didn't and we had to stop on the way for pain medication.
- Have a transfer sheet on their bed before they get home. (An extra flat sheet between the FA’er and the regular sheet.) This is the only way to help them turn over without causing pain. We also brought home all those throw-away pillows, which we used to prop Phillip on his side. The transfer sheet was also how we could move him from bed to lazy-boy without having to pick him up. It saved him pain, and our backs. (One person holding the sheet at the head, one person at the feet, and if possible one person in the middle keeping him straight.) Our medical plan provided us with a high-back, reclinable-back wheelchair for the first few months at home. That gave Phillip neck support, allowed him to rest semi-reclined, and in the fully-reclined position allowed us to give him a neck-up and waist-down shower without getting his cast wet. (He could not have a proper shower until the cast came off.) This is where you can see that if the patient is still ambulatory it saves much difficulty and discomfort in the recovery period.
- See if your medical coverage will provide a physical therapist to visit the house after surgery. Ours did and she was very helpful in coaching us in transfer techniques, ordered that wheelchair, etc.
- A commode is a good thing. Making one transfer from bed to a bedside commode is much better than bed-wheelchair-toilet.
- Brianne benefited using a long portable Velcro strap that went around the upper part of her body and the chair when sitting up so she couldn't bend forward accidentally.
- Because of the movement limitations, the awkwardness of the brace and her lower functionality Brianne needed full time care for about 6 weeks. Even after movingback to her apartment she still needed someone there most of the time for quite a while.
- This is a time for friends, family, church family etc to step forward. 24/7 is too much for 1 or 2 people. Brianne needed to be moved several times per night plus we sleep lightly (paranoid) so good rest is hard to come by.
- Her first post-op visit was positive. She could move any way she wanted as long as it didn't hurt. The brace now is to remind her that she still had a "boo-boo" and to protect her (and the spine) in case she falls. Brianne was in her brace for 6-8 months.
- Phillip attempted no school for three weeks after surgery. After that time the teachers came to the houseto give him the instruction and testing he needed to keep up. He was actually quite ready to have some intellectual stimulation by then, but was still physically very weak. We had to be a bit assertive to insure he had proper instruction. Normally they just provide whatever teacher wants some additional part-time income. But Phillip was taking courses like Accelerated Chemistry, and French 4, and they couldn't find any ONE teacher qualified to teach his whole curriculum, so they split it between two teachers. The teachers came to the house alternate afternoons (after their regular work day) and gave him about 3 hours of instruction. He was meant to do the necessary reading, and whatever 'work' he was physically capable of, during the day. It was fairly successful, and he returned to school a month ahead of schedule, after 5 weeks of ‘home study’. (Because he couldn't stand being stuck at home any more.) He still had his cast on, and was still fairly weak, so the school district provided him an aid, who's job was to get him around campus, set-up his lap-top for him, etc. (because he couldn't reach under his wheelchair with the cast on.) One aid was a real DUD and we had to ask that she be replaced. After his cast was off in early April he was on his own. (And he was happy to get rid of the aid....who he felt cramped his style :))
- Phillip’s cast was removed 3 months after surgery. He was like a limp noodle, and had a hard time holding himself upright. However, after a couple of months he rebuilt his torso muscles, but still has a pivot point at the hips. Even after 2 years he still has a tendency to almost tip over, because his center of gravity is now so much lower. He flatly refuses any additional supports be added to his wheelchair, but they are available. After about 6 months he quit being sensitive about his back being touched. He has had no pain or complications from the surgery at all.