Comments for Robert's Notes

Comment on 21 Weeks After Coccygectomy by Alison

Alison — Wed, 22 May 2013 13:49:20 +0000

Does anyone have or had an abscess where their drain tube was?

Comment on 21 Weeks After Coccygectomy by Shona

Shona — Wed, 22 May 2013 10:45:11 +0000

I stayed overnight and most of the rest day as felt dizzy and nauseous every time I tried to get up.

Still feel a bit like that to be honest but I know I need to try and move a bit.

If I lie flat on my side with a pillow between my knees the pain is minimal with painkillers. I slipped on to my back during the night tho and that was agony

I know it’s going to be a long process and its great to have people who can share experiences and tips.

Thank you

Comment on 21 Weeks After Coccygectomy by robert

robert — Wed, 22 May 2013 02:14:15 +0000

I’m so glad to hear that you’re doing well! Were you able to go home the same day as the surgery, or did you have to stay overnight?

Comment on 21 Weeks After Coccygectomy by Shona

Shona — Tue, 21 May 2013 01:27:21 +0000

Hi there. I had my coccygectomy 20 hours ago. My surgeon had only done it 3 times before. He said I was a good candidate as it was hyper mobile and I had gotten relief from injections. He told me after he took it out that it was also very long.

Am typing this in the middle of the night as woke up in some pain and have had some oral morphine to ease the pain.

I have done a lot of research and my surgeon also told me coccygectomy is being done more now, especially in the US. (I’m in the UK) if you are considered a good candidate success rates are 85-90%.

Robert, its fab to hear you are doing ok. Will keep in touch and once again thanks for your support and sharing your experiences.

Will keep you updated

Shona

Comment on 21 Weeks After Coccygectomy by robert

robert — Sat, 18 May 2013 20:59:56 +0000

Steph, I am curious why the surgeon thought a coccygectomy was not the right move right now?

Comment on 21 Weeks After Coccygectomy by Phil

Phil — Fri, 17 May 2013 16:15:14 +0000

Crystal:
In addition to Robert’s suggestion about X-rays, let me ask if you may wish to consider a second opinion. I have a friend who went to Hopkins without much success and ended up going to Dr David Levin (also in MD). She had surgery there and is doing pretty well. (see coccyx.org for contact info).
Phil

Comment on 21 Weeks After Coccygectomy by Steph Davis

Steph Davis — Fri, 17 May 2013 14:05:09 +0000

The surgeon had only one of his surgeries have a major infection otherwise he mentioned no other complications. He said that 70% of them had almost 100% relief the rest had some pain or no improvement in pain. He felt pretty confident that I would have a full recovery after the surgery, once he was in surgery and saw that it was worse then what was on the MRI. I had one piece pushing inward and one pushing out into the muscles. It then was clear to the surgeon why I had no relief from pain. I am very happy with my results from coccygectomy so far, and would have done it much sooner had I known that I would feel so much better.

Thank you for letting me know that you had similar muscle pain it relieves some worry.

Steph

Comment on 21 Weeks After Coccygectomy by robert

robert — Fri, 17 May 2013 03:54:12 +0000

Hi Steph. Welcome!

I did have a lot of muscle pain for about 2 months, but not any more. I look back at pictures of my backside right after the surgery, and I can’t believe how black and blue I was.

14 weeks seems like a long time to me to be having the glute pain. I do have pain, but I wouldn’t categorize it as muscle pain, and I only feel the pain when I sit.

Di your surgeon indicate how successful his other coccygectomies were?

Comment on 21 Weeks After Coccygectomy by Irene

Irene — Thu, 16 May 2013 14:52:03 +0000

Hi Robert,
thanks for the answer. Only three days in hospital – that surprises me. Reading so much about the great and long-lasting pain I thought a week would be the minimum…

It’s a bit scary to read all the details of the nerves and muscles… Last year I got a hemorroides surgery – Longo method… And something went wrong. They damaged the anal plexus a bit… Since I’m slightly incontinent. And it doesn’t improve anymore…

I don’t know how to find the right surgeon. As far as I can find one willing to perform this surgery, he will pretend to be the best surgeon… Unfortunately I’m not a privat patient – I might even get a beginner. I don’t know what to do… MD’s don’t seem to be able to find a solution to the tiniest medical problem.

I fear that there might not be any description of this surgery in average surgery books or they might be to lazy to study them properly… Well, I’ve found at least little information uploaded by M. Jean-Ives Maigne. I might at least attempt to inform my future surgeon about it:

“Postoperative infection is a regular complication in coccygectomy. The authors propose the use of a topical skin adhesive on the postoperative wound as a contribution to the prevention of this complication. It was used on the first 56 patients in this study. The rate of infection was 3.6% compared with the 14% rate of infection in a previous study. The 80 following patients had, in addition to the skin adhesive, two prophylactic antibiotics for 48 hours (cefamandole and ornidazole), a preoperative rectal enema, and closure of the incision in two layers. The rate of infection dropped to 0.0%. Topical skin adhesive constitutes a significant contribution in the prevention of infection after coccygectomy.”

Tomorrow I should get the results of my dynamic x-rays… The skin above my coccyx gets numb when I’m sitting. Normal dynamic x-rays would definitely be a very big surprise.

Irene

Comment on 21 Weeks After Coccygectomy by Steph Davis

Steph Davis — Thu, 16 May 2013 14:22:30 +0000

Hi Robert I am glad to hear your recovery continues to improve. I had 3 pieces of my coccyx removed 14 weeks ago. My recovery has gone very well, I was off daily use of pain and muscle relaxer medication by the 4th week. The biggest issue I have is continued muscle pain and occasionally burning in my gluts, like I have been doing squats all day. It happens more when walking up steps and caring heavy items. I have done acupuncture prior to surgery and have continued since( now with some deep tissue massage) and that has helped greatly. It helped a lot with coping with pain, the depression associated with the crippling pain, and now the recovery. I am also going to be meeting with a yoga teacher one on one to have a routine to help stretch and loosen the muscles. Any way, the question I have for you is do you experience muscle pain now? I have not read anyone else’s stories mentioning this muscle pain. It is so minor compared to the pain before surgery however I have nothing to compare it to to know if it is normal. My surgeon was a well known and desired surgeon in my area
however I was his 7th coccygectomy, so he had very little information to share on recovery.

Thanks for sharing your story,
Steph