Upcoming surgery, any advice? (now 7 weeks post-op)

Taunya - taunyarose@yahoo.ca

Original posting, 2005-08-21:

It all started after my first day of classes in September 2004. As I went to lie down in bed I noticed a sharp pain when I put pressure on my lower back, not thinking much of it I just turned off the light and went to bed. The next morning the pain had become progressively worse. Commuting to school and sitting through classes just furthered my discomfort. The pain continued to increase and I had extreme difficulties sitting and walking. My tailbone was throbbing; I had pain in my right hip and groin. After calling the doctor my Dad and I went to emergency, only to find out they didn't know what was wrong and medicated me with Demerol to ease the pain. We proceeded to see various on-call doctors since mine was away and had x-rays, and ultrasounds that were coming back negative. I was also prescribed antibiotics and an anti-inflammatory in which neither provided any relief. Two more trips to emergency and the doctor found I had a pilonidal cyst by my tailbone. The next morning I went to another doctor for a second opinion. I was scheduled for surgery that night.

Following the surgery all seemed well, my incision was healing quickly. I was to be back to my normal life soon. Unfortunately the pain never seemed to dull, even after my incision had completely healed. I still experience severe tailbone pain especially when sitting or walking for a period of time, my right hip and groin area are continually aching, my lower back is very sore and I have difficulty with my bladder. I went back to my surgeon and he told me I might be a slow healer, and to be patient. By Christmas I was out of patients so in January I went back to him. He was unable to explain why I was still experiencing so much pain and proceeded by ordering a bone scan for me and referring me to an orthopedic surgeon. In between all of this I was seeing my family doctor for pain management. His stance on my pain was that it would naturally go away and there was nothing physically wrong with me. I continued to see my family doctor regularly since my specialist appointment wasn't for a year. Given that I was in school I need help getting through my days because sitting was such a problem. I started taking various narcotics. I went from anti-inflammatories, to Tylenol 3's, percocet, oxycontin, and finally on an increasing dosage of morphine. I also was prescribed amitriptyline. In the meantime I was still having a really hard time keeping up with school. The medication made it difficult to complete my school work and the sitting was too much. I ultimately had to finish school early, I lost my job and my whole life was rapidly changing.

I started to see a chiropractor who tried to help alleviate my pain but ended up telling me there wasn't much he could do. The same happened with a physiotherapist I was seeing. It seemed as though I was getting no where and no one could explain my pain; this is when my parents and I decided we needed to try and find a doctor privately. We went through an association called Medcan that has their own assessment team of doctors. They didn't have a doctor that could help me so, they referred me to a doctor who could. This is how we came into contact with Dr Lithwick. This was about the same time I became familiar with the coccydynia website, which is extremely helpful since I can read personal stories from patients of Dr Lithwick. It took 4 months to see Dr Lithwick and I couldn't wait to hear what he had to say. At first he examined me and obtained the history of the past months. I had x-rays immediately that found I have an abnormality on my tailbone and a degenerative disc. Dr Lithwick first wanted me to stop taking the morphine and try a coccygectomy pillow instead of the ring I was using. I was also told to use a heating pad frequently throughout the day for 5 minutes at a time. He then ordered a CAT scan.

I had no idea how dependent I was on the morphine and it was exhausting trying to adjust without it. I initially tried to slowly decrease my dosage but I would just keep taking an increased amount. I finally had to get rid of it and just stop cold, and my body was not impressed. I had withdrawal for a couple of weeks consisting of nausea, vomiting, hot flashes, and the chills, headaches and increased pain. The benefit to all of this was I finally felt a little piece of myself come back instead of being out of it all the time due to my high dosage. I had my CAT scan and waited to hear from the doctor. In the meantime I needed a way to cope with the pain since morphine was out of the question. I joined a gentle healing yoga class, which is difficult but helps the rest of my body move. I have tried acupuncture but found little relief. I have found being in the water helps relieve pressure, so I stand or float in the water when I can. Currently, I am reading about therapeutic touch.

I went back to see Dr Lithwick for the second time; since, there was little relief from switching pillows and using the heating pad, he recommended using a different anti-inflammatory. Unfortunately, I had a reaction to the medication and had to stop taking it. The third appointment I had with Dr Lithwick we discussed surgically removing my tailbone and I have decided to have it. My surgery is September 6th and I am so nervous and yet anxious to get my life back.

If anyone has any advice and/or strategies about having their tailbone removed I would really appreciate hearing from you. I also am having difficulty getting off my amitriptyline, has anyone else experienced problems with this medication? Also if there are questions about my story feel free to email me.

I hope this helps some of you sufferers out there because your stories have helped me!!

Taunya

Update, 2005-10-30:

I just wanted to update my story for all those who are considering surgery. I am about 7 weeks post-op. The progress is slow but it's there, I am definitely learning to be patient.

My surgery went well and being in the hospital wasn't near as bad as I thought. I shared a room with another woman who had her tailbone removed the same day, so we were able to share and laugh over the silly situations our sore bums had brought us. (Hi Heather)

The pain after the surgery was definitely intense. I was prescribed Percocet. I stayed on that for just over a week and switched to Advil (which I am still taking). I was out of the hospital in two days and was glad to be on my way home.

I took the suggestions from many of you to sleep on a cushioned couch to help me stay on my sides during the night, which worked well. Thanks! In the beginning, walking and standing were very difficult but I have come a long way.

Now for the Good News!!

I now can walk for about 45 minutes and stand for just over an hour. I also started sitting about a week and a half ago. Initially it was a couple of minutes and has become about 10 minutes 3 times a day. I can sit and eat; I am thrilled. I still use a coccygectomy pillow and I can't lean back at all but I am sure it will all come in good time. Lying on my back is uncomfortable but I can for about 5-10 minutes. I have also started weaning off of Amitriptyline, 3 weeks ago. I am decreasing 5 mg a week, and so far I have only suffered from headaches.

My incision healed up very well and can't even see the scar, I am really pleased about that. The pain in my groin, hip, and disc area has not ceased and I am still having problems with my bladder. My tailbone area is still too tender to start working on the other issues but at least one is a work in progress!!

I heard this quote on Oprah and felt it fit my and many of our situations: "I know my journey isn't complete but I am nowhere near where I was before". -Wynnona Judd

If anyone has any questions feel free to email me.

I have made an appointment with a doctor who practices Rosita Arvigo. Has anyone tried it? I would love to hear from you.

Taunya

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