Abscess due to steroid injections - had to postpone my surgery

Amanda - fferraz@me.com

Posted 2013-06-30

My name is Amanda, I'm female, Brazilian and 35 years old. I came to USA to take my masters in law and was sharing an apto with a friend in NY city, when one night going to the bathroom, still half wake and half sleeping I tripped on the rug and fell on my back/butt inside the bathtub. It was on October 2010.

The day after the fall I could barely walk, it hurt inside my pelvis and the pain travelled to my legs and hips. The following weeks were hard to do any activity including attending classes or studying in the library.

I went to my doctor who asked for X-Ray and sent me to an orthopedist, who told me I had broken my coccyx, but there was nothing to be done and that the pain would go away in 2 or 3 months. Indeed, the pain went away after 3 months, during which I studied poorly, but the next semester I was fine I could finish my master. After the graduation (may 2011) I started working, which required more sitting than studying and less chances to change positions also, that's when the horror started. Three weeks at that job and the pain came back worse and became so unbearable that I needed to quit. (I did buy a stand up desk to work, but still didn't help enough.)

2011 - Symptoms:

- burning sensation on my buttocks, I needed to lay down, wherever I was!

- the pain would travel down the leg, inner thighs, hips and lower back.

Best position

- only lying down

- I couldn't sit for more than 15 min or walk more than 20 min (depending on the day)

- I couldn't wear tight clothes, or pantyhose or tights! Neither heels!

- I still cannot seat much or walk much (but under meds and steroid injections I can do more- which I'll explain latter)

2012 first semester: In NY I went to see orthopedists, physiatrysts, and pain doctors.

First few treatments:

- vicodin or precocet,

- internal coccyx manipulation, I did it for three months and it didn't help at all, I mean there was days that helped, but nothing definitively.

- Physical Therapy (I tried three types), them were only making my pain worse, the PTs prescribed me buttocks exercises! What actually triggers the pain, which was always much worse after the sessions. Well, I kept trying others types of physical therapy, but only lost time and money

- Steroid injections: those were the only thing that gave me relieve from the pain. The first 2 injections were ganglio impar block and it last for 10 days, than I changed doctor and he gave me coccygeal block, which I think is broader than the ganglion impar one, and it helped for 15 day! However the pain always came back.

After seeking help in NY without any solution, I had already lost my job and work visa so I went back to Brasil full of hope. (second semester of 2012)

Since I had a fusion on my neck in Brazil, just before I broke my coccyx, I had doctors that I trusted in Sao Paulo, and went to see them: an orthopedist and a neurosurgeon.

I was the one the begging for my coccyx to be removed, I had suffer from pain on my neck due a herniated disc, which only cease after they removed it, so my rational was the same: Take it out, it is broken, only after it is out my pain will go away.

They were extremely against, they really convinced me at the time that my "pain was in my head" that it was not related to the broken coccyx and offered me a morphine pump and/or neurostimulator,

I was so desperate that I said yes, I must confess that a poor explanation was given me about the side effects of those treatments and the size of the pump etc. So I was actually happy to try them.

First I did the trial for the morphine pump, which was great, despite the nausea and constipation, I was pain free, so I scheduled my op. Two days before the surgery, my boyfriend found out on the internet that the size of the pump and how it could be hard to deal, also there was testimonies of people who have it and were complaining about that on the net, therefore I put off the surgery.

The same doctors, then, put me on a trial for the neurostimulator, which worked and let me 80% pain free, so I went for the surgery and had it implanted. It was great for 2 months.

The neurostimulator stopped helping me after 2 months! I did stay 2 months pain free.

After this ordeal and my boyfriend (now husband) going back and forth to Brazil and USA, I came back to NY in January, to be with him and to keep pursuing help. At that time I found this amazing site, which only would be more amazing if we were all healthy and discussing amenities :-) - but under the circumstance this web page was my hope!

Through this site I was able to find an orthopedist in Charlotte, NC, Dr. Edward Hanley, (see Doctors and specialists in the USA, North Carolina) that told me I should definitely take the coccyx out and we schedule the surgery to June 20th.

I just need to state that, meanwhile I was trying to find an orthopedist willing to perform my surgery I was still seeing my pain doctor. He is and always was very against the surgery, among a lot of other doctors that scared me about it. Trying to avoid the surgery I was doing everything the medicine could offers to help, including pain meds, steroid injections and phenol injection.

When the phenol injection didn't work I thought that I didn't have other choice than the coccygectomy, which was ratified by Dr. Hanley. The only problem is that by the time I saw Dr. Hanley I had already a small wound that appeared on my skin, after the phenol injection, right on the coccyx area, and he did said he didn't like it, and would just perform the surgery if it was closed. Although he "didn't like the wound", when I asked for another steroid injection, he didn't hesitate and gave me. I came back from North Carolina very happy and was looking forward for the surgery.

Meanwhile my boyfriend proposed June 1st and we decided to get married in the city hall 2 weeks after (June 14th - Friday). The Wednesday before the wedding, my parents came from Brazil and that same day I woke up in a lot of pain, a different pain, more localized, burning and stabbing at the same time, I could feel that the coccyx area was hot and there was a bit of pus draining from that wound...

My father accompanied me to the doctor, a general physician, who said I had an abscess, pilonidal cyst, probably due the amount of steroid injection I have had in a short period of time (steroids can lower your immune system). He prescribed me antibiotic and salt bath. Unfortunately it got worse, I don't know if it was because I pushed or if it would get worse any way. As you imagine I "couldn't rest", One can always rest, but who isn't tired of having your life holding back because of the coccyx, I tried to live my life those days before the civil wedding, my parents wanted to enjoy my company, so we had lunch; dinner; drinks with friends that also wanted to celebrate the day before, that's when I started having more and more pain.

I woke up on Friday and wanted to postpone the wedding, which we decided was not an option, since I had a surgery scheduled the following week.

Thanks to vicodin I made through the morning, somehow, it was beautiful, but I couldn't enjoy like a normal person, between the pain and the drugs, one cannot be yourself completely! Oh well, still was one of the most beautiful days of my life.

Unfortunately, during the small celebration at lunch time, the pus draining from the abscess was already getting on my wedding dress, so after lunch and a lot of photos I needed to go home. That night the pain was unbearable, I started having fever and my heart was so fast that my father decided to take me to the ER. I was admitted right away mostly because of my heart beat than the abscess itself. (the heart beat can go fast due the fever and pain). The doctors and nurses gave me IV for fever, put me on a monitor for the heart and finally 5 hours late decided to cut and drain my abscess. I stayed one night at the hospital, had a lot of IV antibiotics and came home. (Yes, I spent my wedding night in the hospital with my Dad and my Husband!)

Now I was told that I have to wait until my abscess heals completely so I can have my surgery!!! And I was also told that it can take 3 months to heal?! Has anyone had that?

I cannot stand it all anymore. It is still draining, I change my dressing 2 or 3 times a day, I cannot move much, and I'm going crazy at home. It seems like a recovery from a coccygectomy which I will have to face soon. If anyone went through that please contact me so we can discuss. I'm also open to questions related to my previous treatments and the symptoms I had. Thanks Jon for your initiative and for helping so many people with those useful information.

I wish you all a great recovery and pain in the past forever.

Update:

The new problem now is that I'm having too much leg pain! I don't know if that can be related to my broken coccyx 90 degrees, or the abscess that was cut, drained and left open for 15 days now.

I just know that those leg pains are unbearable, I take hydromorphone extended release 16 mg once a day, and vicodin for the break through pain, but it is not helping! There is no position that helps, nothing! It seems that I have electric wires hanging on my legs and crossing or over crossing one another, it's an electric pain, really scary.

Update, 2013-07-21

Last time I wrote I had an abscess on the coccyx site that would take 3 months to heal and with unbearable leg pain. The leg pain were sciatica due the wrong positions that I was sitting or positioning myself to avoid touching the abscess.

08 July 2013 - I started having fever and vomiting so went to ER, the infection got worse, it was in my bone, a piece of bone detached from the coccyx, last piece of the coccyx, so the NY Presbyterian Hospital sent me home. July 10th I was concerned and went to see the general surgeon that I was following up with for the abscess, he also didn't like the whole picture. He is a general surgeon, not an orthopedist or neurosurgeon so he couldn't tell more, so he spoke on the phone with Dr. Hanley (Charlotte NC), and convinced himself that I wouldn't find a doctor that knows better the pelvic area in NYC (it should be really embarrassing for them). After the call Dr. Edward Hanley agreed to see me the following morning and even schedule the surgery for the day after. (I didn't know if the surgery were going to be for the piece of bone infected or the whole coccyx, neither him, he needed to see me.)

July 11/2013 - We came to Charlotte, Dr. Hanley saw me, said that this abscess would take 2 years to close by it self (bad doctors, those prior ones), and that he would open, clean the infection and take it all out, meaning the piece of bone that was infected and the rest of my coccyx. I was so happy, but since English is not my first language I asked again to be sure, and he confirm yep, all out tomorrow.

July 12/2013 Friday, Day of the surgery, I was nervous, of course, I couldn't stop playing with my hands and hair. Then I went for surgery and woke up in a lot of pain, but they gave me pain meds as much as I asked and put ice on my butt what helped a lot, then I saw my husband, ate, drank juice and was so so happy to think about my new life!

Dr. Hanley said right after the surgery that my coccyx was detached from anything, that the 2 pieces of my coccyx were floating and looked dead, lack of blood I guess. No wonder I had so much pain.

To go back the hotel was fine I was laying down in the back of the car, however getting out of the car and walking to my room seemed impossible, but we managed, we means me and my husband, also getting on and off the bed was trick for the first 2 or 3 days, since the Dr. advise me to not seat down for 3 weeks.

I bought the rise toilet seat, best thing ever, great tip from this site. The grabber also. The only drawback was that I couldn't pee by myself after the surgery, so it cost us a few trips to ER.

Regarding pain, I think first and second night I put ice on the incision and that was the worse time, after that I'm doing really well.

Today is the 17th of July 5th day of surgery: I saw Dr. Hanley he took a look at my wound, the nurse changed the dressing and they said that everything looked nice and that I could go back to NY and my general surgeon could take my stitches out.

I'm taking antibiotics and being very careful with infection since I already had it before the surgery, so I have more risk than normal. Also taking my pain meds which I decrease from 16 mg of hydromorphone ER to 8 mg throughout the day, 4x 2 mg.

I've been walking 15 min a day outside and a bit inside the room, yesterday I walked 20 min, today I walked more than 40 min, we went to the mall for ice cream, I felt sore after but laying down solved the problem.

I'm feeling so much better than I thought I would. I only feel pain to go to the toilet, which is decreasing also.

I'll update after but I would like to encourage those who are good candidates to go for the surgery, and those who were told are not a good candidate to really try to see the right doctor and find out if you are or not. After I went to so many and I've heard it all, that it was depression; that it was chronic pelvic pain, that it was muscle disorder... And it was more simple than expected, the doctors that were awful and I'll write them a letter, BAD DOCTORS they need to know.

For me, Patrick Foye (see Doctors and specialists in the USA, New Jersey) was no help at all. I went there and spent 6 hours (in pain), he plays a video for you, make his interns look at you, does x-rays, and at the end he said that I had coccygodynia, but I was not a good candidate for surgery because I had pain on my hips already??!! All without examining me himself! And he told me there was nothing he could do apart from injections, which I was already receiving from my pain doctor.

Keep looking for better doctors don't give up.

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