Surgery after nearly 10 years of pain

Sandra - sandrabatescraig@hotmail.com

Original posting, 2004-08-15:

My problem with my tailbone started 10 years ago this coming September. I was doing some upgrading in word processing at a neighborhood adult education centre preparing myself to go back in the workforce. Our son was 5 years of age. In only a few short weeks my tailbone started to hurt everytime I sat down. Eventually I was referred to an Orthopedic Surgeon. Xrays were taken and the answer I received was that I had a chip-fracture of the tailbone. Over the next 10 years I went for physiotherapy, laser treatment, chiropractor, 2 more Orthopedic Surgeons - all to no avail. I was offered cortizone injections all along but refused. I believe it is only a temporary fix and hated the idea of a needle in my bone. Also I heard you could only have a maximum of 3. Why bother.

Finally my family doctor suggested I get onto the internet and look under Physicians and surgeons - there had to be a doctor somewhere in Toronto (nearest large city to where I live) who will remove your coccyx.

My terrific 15 year old son found this website and I was able to get an appointment to see Dr. Norton Lithwick in Toronto. He looked at my old x-rays, examined me and had new x-rays done right then and there. By the time I walked out of his office I was scheduled for a coccyxectomy surgery (removal of tailbone surgery). That was May and I had my surgery August 10, 5 days ago.

I am 51 years old and prepared myself for a tremendously painful and long recovery. By the day after surgery I was down to 1 - 500 mg dose of demoral every 3-4 hours. Today, I am going 8-9 hours relatively painfree. I'm cooking for my family, doing laundry, climbing stairs (right away) and feel like having a glass of wine. But, I think I will wait a few more days till I'm totally off any meds. I get my stitches out on August 19 here in my home town and I see Dr. Lithwick in 6 weeks. Thank you Jon for creating this website. I'm a new person.

I would also like to refer/recommend Dr. Lithwick (see list of doctors). He's a wonderful gentle gentleman and did a marvelous job of my surgery.

Update, 2004-10-03:

I just had my 6 week check-up with Dr. Norton Lithwick and he is very happy with my progress. I see him again in 3 months. I can return to work now, but am going to take another month to get stronger and a few things done around the house.

I am relatively pain-free now. If I do too much I may feel a sense of being swollen or a tightness in the surgery area. My incision is completely healed. Sometimes my lower back and hips hurt, but that is probably because I lay around too much and when I do sit for any length of time I tend to favour the surgery area because it still hurts to sit normally. I can sit switching from one cheek to the other or right up straight for a few minutes. No pain pills for about a month. I strongly recommend this surgery to anyone suffering with this. My experience was a good one and I'd do it again in a flash.

Update, 2005-02-20:

It has now been just over 6 months since my surgery. I was unable to keep an appointment with Dr. Lithwick last month due to a work commitment. I now cannot see him until March 24.

I am still experiencing some pain (not unbearable) particularly if I sit too long and always after purchasing groceries. I don't know if it is a combination of pushing the cart, hauling the grocery bags in and out of the car, into the house and then all the bending it can take to put everything away. But, I am always sore for a few days after.

The pain is different from before the surgery. I don't seem to have pain around the bone anymore. It is more across my whole backside. My incision still feels tight and swollen sometimes.

My husband and I just returned from a 2 week vacation in Cuba. I stood for the 3 1/2 hour flight going down (other than take off and landing). On our return flight, I took a Demerol 1 hour prior to take off and sat the whole flight. Was that a mistake!! Once the Demerol wore off, I was in pain for about 5 days. While in Cuba, I could only lay on my stomach on the beach loungers. Needless to say, I spent a lot of time walking the beach. I ended up with a beautiful tan but also an irritated heal spur. I can't seem to win.

I sometimes feel I'll never be back to normal.. Dr. Lithwick said 4 - 6 months recovery. I'm past that and still unable to sit for more than a few minutes. I have a special cushion for my car which works really well for about an hour. I have to sit completely straight up so my lower back and butt do not touch the car seat. But that cushion does not work in any other chair. I sometimes stand for a meal still. Depends on my day.

I still do not regret having the surgery. It's a different pain I have now. Hopefully it is the nerve endings and soft tissue still healing. That's what a few nurses have suggested. They say that can take a year or more. Especially at my age. I still take extra strength Advil (ibuprofen) a few times a week It seems to work quite well.

Update, 2005-04-03:

It has now been almost 8 months since my surgery. I saw Dr. Lithwick last week. My progress is a bit slower than he expected and/or hoped for and is therefore prescribing physio therapy.

I am feeling much better though. My pain is mostly only when I sit too long, or sit on a chair that is not firm and upright. Hopefully the physio and the odd massage here and there will help. My feet are a problem now. I stand so much (and have for years), now I have a heal spur. Orthodics are helping ease this somewhat. Will update again after a few weeks of physio.

Update, 2006-02-05:

Looking back on my story, I was so optimistic at first. It has now been 17 months since my coccyxectomy and I am worse off than prior to surgery. I believe I have exhausted all my options. I have finished 10 sessions of a "warm water aquated program" geared to people who have had bone surgery or arthritis, 50 physiotherapy sessions, 6 massage therapy sessions and I am now currently seeing a chiropractor twice weekly. He is an hour away from where I live, it costs me $39 - $50 per visit I was referred to him by my physiotherapist because he is one of only 3 people in southern Ontario who has this laser machine. It helps heal soft tissue damage, nerve damage and scar tissue. The nerve damage that caused substantial pain across my buttocks has improved, but unfortunately the feeling of an open wound deep inside where the incision was is still there and very painful. Especially if I have been sitting for any length of time. I have had approximately 12 laser treatments so far, plus he does an adjustment to my back at every visit. The improvement is slow, but there is some relief.

My surgeon, Dr. Lithwick, stated at my last visit to him that I may have to be opened up again. Why, I do not know. He already removed 3 portions of my coccyx. He also stated that I may need a cortizone injection. I'm not ready for that. It frightens me.

The only place I can sit somewhat comfortably for a longer period of time is in the drivers seat of my car with my V-shaped foam cushion. I still have to sit straight up with the majority of weight on my thighs. Both my feet now have heal spurs and I also experience a tremendous amount of pain across the top of my feet and shooting into my toes. Boy, am I a mess.

My husband has been my rock. He is so patient, understanding and helpful around the house. I feel so bad that I am not the wife and mother I'd love to be. Living with this pain day in and day out has been hard on my whole family. I hope that at some point I too can say I'm at 80%, but at this point, it doesn't look too promising.

Sandra

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