I have no idea what I should do next so I thought I should share my story in hopes that someone out there may have an idea what the problem is or where I should look next. It is a long-ish story but I feel I need to include all events as a lot has happened and it may help identify the problem or something that I am missing.
I had a pilonidal cyst first occurring in February 2018 which would flare up every 6 weeks and was treated with antibiotics each time and it would last about a week to 10 days. I was referred to a surgeon and in December 2018 was put on a waiting list for a Karydakis procedure.
I am a slim person and not hairy, the surgeon said It was just unlucky. The cyst was located near the base of my spine to the left side of my mid-line near my sacrum.
I had the surgery on the 8th of May 2019. When I awoke from surgery I was told that I received general anaesthetic and local anaesthetic (spinal anaesthesia) to the area. I asked if the surgeon would come see me before I was discharged and was told repeatedly that yes he would come see me (I had questions about the depth, size etc). He did not see me and I was sent home.
Immediately after the anaesthetic wore off I complained of pain surrounding my sacroiliac joint and my posterior superior iliac spine. The pain in the iliac was aggravated by anything touching the area. Particularly wearing pants or underwear. Any pressure on the area would cause quite severe pain.
The scar healed and then broke down and became infected about 8 days after surgery. Treated with antibiotics and healed.
Went for follow up appointment with surgeon 3 weeks after surgery. He was not present, apparently he was busy. I saw another doctor instead who performed an examination and declared it had healed well. Asked if I had any questions or problems. I told him about my severe pain that radiates from the wound site to my sacroiliac joint and iliac spine. He told me it was completely unrelated to my surgery and it must have another cause. He then read out my post operative notes which are as follows.
Details of Operation: (Including incision, technique, findings)
Careful examination. Scar from Prior incision identified and small scarred abscess cavity were excised in 1 block – Elliptical excision focused to left of midline.
No Further Pilonidal disease was identified.
Washout saline and then betadine.
Karydakis incision to create right flap. Vicryl deep suture. Prolene to skin.
Steristrip and comfeel dressing.
Now I must make clear that I HAD NO SCAR. I had never had this cyst operated on, excised or incised, nor had it ever burst or surfaced. My GP opted for surgery as the cyst was too deep below the skin to drain or burst. I do not know why this was in my operative notes. I know sometimes there are information errors etc but I don’t know if this is relevant.
I informed the doctor of this and asked why a scar was identified when I had no markings or scars and how it could possibly be that prior to the surgery I have never had lower back pain and then immediately after surgery I suddenly have crippling lower back pain. He left the room to go ask the surgeon who actually performed the surgery. I was pretty confused why he could go talk to the surgeon about my surgery but the surgeon couldn’t see me (again). He left for 5 minutes and came back to tell me he’s not sure about the incorrect information in my operational report and that he confirms the pain has NOTHING to do with the pilonidal cysts or the surgery. That I should follow this up with my GP as there must be another cause.
Today I still suffer from chronic lower back pain. I struggle to describe it but basically any pressure (pants, underwear) resting against my posterior superior iliac spine causes severe pain to my iliac, I cannot wear a lot of clothing. G-string underwear aggravates my Sacrum and causes worse pain.
In general I have pain regardless of what I try, it is aggravated a lot by sitting though, sitting becomes impossible. My whole sacroiliac joint region aches. Not a dull ache but like I’ve fallen or been hit by something. Some days it is crippling and I struggle to move.
Recently the pain has worsened around my sacrum. The pain is sharp. The pain in my lower back region also worsened, it aches more so. From morning to night.
I have seen around 6 different specialists. While many of them suspect nerve injury or damage, NONE of them will write it in the reports to my GP. They will say it to my face but won’t report it.
I do not have sacroiliitis, IBS, bulging discs or protrusions or Crohns disease. I have no known allergies. The specialist I have seen also all seem to know each other one way or another.
I have had no new cases of pilonidal disease, I had one flare up in July that we thought was a new cyst however the doctor said it was an infection of the wound site and has not flared up since. Surgeons have told me it has nothing to do with the pilonidal disease, they will neither confirm or deny that it has anything to do with the surgery or local anaesthesia.
My MRI results following my surgery and complaints of pain are as follows:
MRI Lumbar Spine
Indication: Ongoing back pain. Recent operation with spinal anaesthesia.
Lower spinal cord of normal signal intensity and morphology.
Lumbar lordosis maintained.
No epidural haematoma evident in the spine (imaging provided from T11/12 to the 5th sacral segment).
No significant bulges nor protrusion.
No neural compression.
No significant lumbar facet arthrosis at any level.
A periarticular geode is noted in the left ileum adjacent to the SIJ. This is an isolated phenomenon with no alternative features suspicious for sacroiliitis.
Conclusion: No significant disc bulges nor protrusions.
This has cost a lot of money for medication, MRIs, specialist appointments, Myotherapy appointments, not being able to work etc. The point is not money though, I just wish I could know what is wrong with me, how I could possibly wake up from surgery with chronic pain that 11 months later is still there every day. Every time I tell a specialist about the pain they are shocked that I have never had pain prior to surgery and then seem to sweep that point under the carpet.
They have all offered Lyrica, however none still will note down suspected nerve injury in reports. I tried Endep for 10 days (a half dose of the smallest dose available) and thought I was having a stroke during this time. My eyeballs hurt, I could not communicate, I ground my teeth, I struggled to talk, my jaw ached etc. I think it did dull the back pain though. I am very reactive to heavy drugs, I am considering cannabis.
The lack of answers and the greyness of the answers they do give me is driving me wild. Are they telling the truth? No ones seems to want to answer my questions, some of the suggestions they do give me are not included in the official reports.
I just want my life back, pain can be so diminishing which I am sure so many people out there understand. I am a very active out door person, I think I am fairly healthy and have no known other chronic problems or diseases.
So... any ideas?? Where do I go now? Who do I ask? Are doctors in each others pockets? Are there doctors you would recommend? Do I need a lawyer?