Residuals from bone harvesting

[marzie]

I'd like to know if anyone else experiences this and if so, how you manage it? I'm going on 3 yrs post. Had a cervical fusion at C4/5,5/6,6/7 with bone grafting from my hip. From time to time, I get sharp, radiating pain in the muscle they cut into, that runs along the right side of my abdomen. Have had a myriad of tests, including ct scans and mri's.
What's even more frustrating is that I have talked to others that had the same surgery and they are not dealing with any painful residuals from the bone harvesting. Granted, they did not suffer a rupture in their neck like I did,so I'm guessing it may just be nerve damage from the injury. It does affect my day to day living, as I never know when it's going to grab me and it has literally stopped me in my tracks. I wasn't expecting to have to deal with this, on top of everything else and it is frustrating the hell out of me.

[dejerine]

Marzie, sorry about the pain, but pain at site of bone harvesting is rather common. I have had it for many years and it seems to be worse at times. I don't know you ever get rid of it. It was worse the first year, and periodically after pressure it becomes worse for a while. They say fractures at that site are more likely your whole life. Just one of the many justifications for people to tell us how "lucky" we are.

Scenario: Wedding reception I have to go to.
Pretty blonde comes up and stares at my shorts.
"Oh, are you from California?"
"No, I have burning pain to the touch of clothing from my spinal cord injury"
"Oh, you're lucky. I wish I could wear shorts here."

Blond joke

Blondes Support Group holds convention. The theme is "Blondes are just as smart as brunettes at math"

One blonde called up from audience and asked. "What is 26 plus 10"She answers 31. The host says, "No, I 'm sorry that is not correct". The crowd yells give her another chance, give her another chance. The host says. "What is 15 plus 15" She says "35?" The host says "no that is incorrect". Crowd yells "give her another chance". The host sighs and says "What is two plus two" She answers "four". The crowd yells "give her another chance".

[marzie]

Hi dejerine,
Thanks for responding. I guess I have to accept that this is going to be a chronic thing. Just wish those damn drs would have given me some inclination as to what to expect. Do you get those sharp pains too, or am I just insane? Cause the drs look at me like I am!

By the way, thanks for the jokes!

[dejerine]

Yes, Marzie, I do. In my case, my doctors also failed to tell me how much fun being in the cast was going to be while I had central pain from touch. It didn't drive me insane, but it sure did increase THE VOICES and make those Martians beam in a lot more of those rays into my head. It only drove me crazy enough to believe my elected representatives would give a rip if I ask them to fund more research at the NIH in basic pain research. No matter how much elavil they give me I keep writing those letters. I know it is crazy to believe in a government responsive to the little guy, but I recited the pledge of allegiance so many times in grade school, I can't shake the idea. I deliberately sabotage the MMPI when they give it to me at pain clinics now. The answers are so screwed up the computer crashes and none of the psychologists can read MMPI by hand now, so they are unable to say for sure I am crazy. I could save them the trouble by confirming it, but I lay it out so clearly they won't believe me. The MMPI is actually pretty funny if you read it carefully, and I always tell them the ink blots remind me of a molecule of N methyl D aspartate, phosphoERK, or the vanilloid receptor. That really annoys them, but it does cause a few of them to read the literature. They still don't get the joke though.

[tocker]

Marzie,
I also have pain in the entire area where the scar in my hip is a reminder that they harvested bone to fuse my crushed t12 injury in January 1982. It hurts when my hubbby is giving me a message and tries to massage the area where the scar is....I just can't take the direct pressure...it feels like a giant bruise. The amount of scar tissue there is huge...my husband (an RN) says that they just butchered that spot and that the scar should be smaller...like the one running down the middle of my back. It healed to almost invisable.

I have been bedridden for the last 3 years from recent development of central pain (who would have guessed after this long). It started out as burning on the back of my left thigh...where I was previously numb and interestingly on the same side leg as the bone harvesting site. My physiatrist first started out attacking it as a piriformis issue. After a steroid and then a botox shot into the piriformus muscle the pain has continued to burn longer and harder whenever I sit on my butt.

I was in grad school and working full time and running (my boss and I) a university program when this burning central pain started. I had to resign from everything because the burning was unbarable and I was heavily medicated as we worked up to high doses to find out if anything could touch the pain...nothing did but I did sleep too much. The piriformus shots did not effect the burning intensity at all but did seem to uncover a trigger point...the area around my left butt bone (I was pretty thin and had a bony ass).

I missed doing my grad school research and turned that energy into internet journal research trying to self diagnosis because nobody but me knew better how, where and why the symptoms began. I found that my onset and ongoing pain sounded alot like pudendal nerve entrapment...a syndrome that many drs. don't know about.

After reading the literature I had gathered about this condition my physiatrist agreed and sent me to another doc who also agreed with the diagnosis. When a CT guided block at the pudendal nerve site did not work, they both agreed that the probable entrapment had gone on long enough (over a year) to become centralized...whala-> I now have central pains.

Anyway...how this all ties into the thread is that you mentioned wondering about how the hip harvesting could effect you. While researching the pudendal entrapment syndrome I ran across an obscure but not very old reasearch article where the researchers were watching and measuring the pelvic bone structure as it adapts to being a bone harvesting site when the patient is >20yrs old at the time. They found a disturbingly strong trend of over harvesting and that bone harvesting from the hip will cause the shape of your pelvis to change....it makes sense since the integrety of the structure must change with all that bone density change. Anyway the other thing that came out of the study is that people who had harvesting from the hip while the bone is still developing are more likely to develop some kind of pelvic pain syndrome because the muscular structure and nerve pathways are forever compromised. My husband did an assessment and said that my pelvis is shaped quite diferently from the back when comparing the hip on the harvested side to the untouched side.

I think that there are so many things that go on with our body after an SCI that are not medically recognised or researched well. Too bad...I have felt like a lab rat all my life. I hope the next generation of SCI's come into a better educated and prepared medical system.

One thing I can tell you (although I'm coming from a lot lower injury) is that after the first 3-4 years my body finally made the adjustment and a lot of the initial aches and pains went away. I had 17 years pain-free. I hope your recovery follows the same path...now that I have developed central pain I realize that pain is so much more paralyzing than having to use a chair because I can't walk. I don't know how people live with daily pain either...I've made it (much to my own suprise) by just hanging on and try to live my life to the fullest every moment.

T

dejerine...the jokes are great and you're an example of how to put up with the fools and live in the moment.

[marzie]

Hi tocker,

Thankyou for all the information. What kept frustrating me so much was that the all the drs (and there were alot of them) that looked at my MRI's (and there were alot of them!) all said the scar had healed beautifully (and it has, really, it's hardly noticable) and that my bones healed great ( I think one of the orthopedic surgeons was hitting on me, kept telling me what beautiful bones I have! ). So, I came to the conclusion on my own that it's chronic, some type of nerve damage. Like you, I went for a steroid injection, but it did nothing. I even had my neurologist do his own MRI and he had his best neuroradiologist read it and still, nothing showed up. It must be some type of nerve entrapment because when the pain grabs me, it radiates and it's very sharp. The only way I can describe it is similar to the worst toothache ever, magnified by 1000. Sometimes it feels like it is initiating at the surgery site, other times it starts lower in the muscle.
The only warning I ever received when I was told I was having the hip graft done was that it would cause me grief for a while, but after a couple of yrs, it should get better. At this stage of the game, I think I need to accept that it may be chronic, so I can just put it away and deal with it the best I know how. I'm determined not to let it get the best of me.
Thanks again for such an informative response.