8 weeks post op in California - Wow what a ride!

Neil in CA - ndrofca@gmail.com

Posted 2010-06-06

I'm 51 years old man living in the San Francisco Bay Area in California. Nearly 7 years ago while driving to work one day I started to develop a pain in my left flank area of my lower back. For the next 6 years, the pain would come for a short while and then go away. As time went on it got worse. Looking back it always seemed to come on after sitting. Such as in the car, in my chair at work or while watching TV. Also, because of the pain I developed a serious case of anxiety. So doctors gave me Xanax. For those 6 years I went into ER rooms many times in excruciating pain begging for something to make the pain stop. For a few years Doctors thought it was GI related due to constipation problems too. So I had several exploratory tests such as many colonoscopies, standard endoscopies and even a camera endoscopy. All came back clean. All the while I was being given many drugs to try and fix the problem. Thing was, the doctors had no clue what was wrong. Before you know it my life started to suffer. I was beginning to miss a lot of work. It was effecting my marriage and I was becoming a very mean person.

In the beginning of 2009 is when things got bad. By then I couldn't drive without having serious episodes of pain and anxiety. I avoided traffic congestion at all costs. I always drove in the right lane just in case I needed to pull over and stop ASAP as panic attacks were happening daily. By then I was missing a couple days of work a week. In May of '09 my life was headed towards ruin. My wife and I split up and she and the kids moved out. The stress from everything happening at the time seemed to be the breaking point for my pain. It was now constraint all day and all night. 24/7. I asked to go out on disability at work and they kindly allowed it. Doctors were still not able to find anything. I went to see a Psychiatrist who said I was very depressed and started me on some new drugs. Some for pain, some for depression, but all bad for you. I hated being alone and in pain. By July '09 I went to stay at my parents house. My mother and stepfather put me up and helped me through some of the worst time I've ever had on this earth. I started having serious pain attacks and was admitted into the hospital several times for a week at a time through August '09. I even spent a week at the renowned Stanford Hospital in September '09. MRI's, CAT scans, blood work, you name it, they did it. But they couldn't find anything. They released me after a week and I went straight to a Chiropractor which didn't help either. My doctor (at that time) requested I go see a Physical Therapist. So I did. Using ultrasound she was able to finally get my back pain to subside. It appeared to be a major muscle in constant spasm. I was elated. This was great news. Did she just cure me? She then had me walk the treadmill for 20 minutes. Then, while walking the treadmill I started to feel a terrible pain right at the sacrum/tailbone joint. I went home and tried to rest it away. Still there. Now I had a new pain which seemed as bad or worse than the back flank pain. I couldn't sit or lie on my butt without severe pain. The Therapist insisted I continue to walk the treadmill. The pain continued to get worse. I had to stop PT. By now everything aggravated the pain.

After seeing a few more Doctors, an Acupuncturist, another Chiropractor, a Psychologist and 2 more PT's I was at the worst time in my entire life. The pain was beating me. I couldn't tell what problems were be caused by the pain vs. the drugs. I truly wanted to be put out of my misery at this point. Now I was on Ativan, Valium, Remeron, Diluidid, Morphine liquid, Cypro, Naproxin and Ambein to name a few. I had the shakes really bad on top of terrible sacrum/tailbone pain!! I was a mess. By now it's Oct. '09. I just found the coccyx.org website where I started to compare my problems with others. Seemed like I had to now convince a doctor of what I found. But it seemed most doctors don't know (or care to know) about the tailbone. But in reading the many stories online I found many others had the same types of experiences I was having with the medical professionals and lacking what I needed most. Support and compassion. I called my health care provider and demanded to see another Doctor. They suggested I see a Doctor of Osteopath. He suggested a pelvic adjustment which helped my throbbing pain subside immediately from 10 to 5. It really helped me during some of my worst pain and I saw some hope. But unfortunately after a few more adjustments there was no more success. So again, I moved on. By now I'm on the internet all the time looking for answers. I woke one morning with terrible ringing in my ears. It's still with me today. Looks like I've developed Tinnitus from all the drugs I'm taking.

After another DO doctor I found myself again in a hopeless state. I saw another PT. She agreed I had something wrong with my sacrum/tailbone area. But she tried a sacral adjustment that sent my pain through the roof. I stopped seeing her and spent 2 weeks in bed. By now it's late Dec '09 and I was on the internet searching for an answers all the time. I came across a website of a very debilitating and painful lower spinal disease called Tarlov Cyst. In reading I found this condition was missed the majority of the time by Doctors and caused the type of pain I was having. I sent my story to the President and Founder of the Tarlov Cyst Foundation, Mrs. Reta Hiers. She so graciously called me one night and we talked for hours about everything. She was the first person to provide me the compassion, understanding and wisdom I so greatly needed by now. I also joined a couple Tarlov Cyst forums. I read some stories that just hit home so close. So to rule out a Tarlov Cyst I requested my primary Doctor to please take a detailed MRI of my sacrum/tailbone area. With some hesitation he granted my request. But the radiologists report came back and said nothing looked wrong. No Cysts, nothing at all. I was again severely let down and depressed. I started to get foreclosure threats from my mortgage company. But I couldn't worry about that. Losing my house seemed so minor compared to my health problems. I was ready to try anything. I could feel the pain right there and yet Doctors said they saw nothing. I was certain I had a Tarlov Cyst. It was suggested to me by other members of the forums to send my MRI out for independent consultation. A member gave me a list of a few good Doctors that provide this service for a fee. So I did. I sent out my most recent MRIs on CD along with a letter.

This is where it gets very interesting. Within a few weeks I had a phone consultation with Dr. Khoo at the Los Angeles Spine Clinic. He said he found several things going on with my lower spine. And recommended I go see a Dr. Kim at UC Davis spinal clinic in Sacramento, Ca. Dr. Kim recommended I have an SI Joint injection on the left side as that is where the predominate pain was in my lower pelvic area. So I had the injection. It seemed to lower my pain enough that I went to see a new PT. One that specialized in Myofascial Pain Release. After a couple of really good pain treating sessions she decided to try and adjust my sacrum alignment and tailbone. After just a little bit of pressure to adjust them my pain went through the roof. The PT felt bad by what she had just done to me. I had to stop sessions as the pain was terrible again. It was that day and that PT that made me realize the problem had to be with my tailbone. So I called Dr. Kim at UC Davis and asked him if I could be seen by their Coccyx Doctor. His name is Doctor Rudolph Schrot (see Doctors and specialists in the USA, California). Interesting enough he is also recommended on the Tarlov Cyst Find a Doctor site too. I found UC Davis to be in a whole different league than any other hospital, clinic, doctors office I'd ever been to. The doctors and staff are all friendly and caring. Doctor Schrot looked at my MRI's taken earlier in Dec and found I had a few abnormalities with my tailbone and the joint where it connects to the sacrum. He also believed my tailbone to be longer than most. He gave me a shot of painkiller right at the sacrum/tailbone joint to help diagnose the location. Sure enough my pain went away. From all these indicators the doctor recommended surgery to remove the tailbone. His nurse Mandy helped comfort me during this incredible moment. I cried so much that day. I was elated. The day had finally come. My problem was diagnoses and a solution was possible. WOW. Before leaving I was fitted for a coccyx cutout cushion. I felt like I was important again. They treated me like I was.

My surgery was planned 1 month out for April 5th 2010. During that long month of time I was in contact with Dr. Schrots medical assistant Mandy. She was so supportive and understanding. She kept me positive in my thinking and encouraged me to think about life after the surgery and how wonderful it would be. On April 5th I arrived at the UC Davis Hospital in Sacramento at 5:30 AM. After going through all the processes of pre surgery I was wheeled into the O R. I remember nothing after that. I woke up in recovery and eventually went up to a room. I spent nearly 4 days in the hospital due to a slight complication. For some reason I could not urinate. It happens I'm told having to do with all the meds and the location of the surgery.

1 week post op my pain was fairly bad. But it was a new pain. I took my pain meds which helped a lot. I slept on my side for sure.

2 weeks post op my pain got less. Taking less pain meds.

4 weeks post op. Pain seems to have been cut in half. So low I stopped the meds.

8 weeks post op. My pain is nearly gone. I take no meds and I find myself forgetting I had surgery or a bad tailbone.

I am currently only dealing with one other problem and I just found out today it may be related. If you'll recall I said I started having ringing in the ears. Well it's developed also into pressure and fullness in the head. I have vertigo episodes and dizziness too. I have found the atmospheric pressure changes make it worse or better. I just got back from the mountains where it had gone away at 6000 ft. Got back home at nearly sea level and its come back. When the weather changes and a cold front comes in, it gets bad. I found out today there is a link between spinal type problems and tinnitus and CSF pressure. I will update this story when I know more.

Well that's my story. I know it's long but I felt if I gave the timeline many of you could relate on how long one can suffer while trying to get diagnosed. Maybe something I did will help you get help sooner. It took 7 years to get diagnosed and 1 month to then have the surgery. If this helps one person resolve their pain problem quicker I would be so happy.

Please feel free to contact me at the email address above and I'd be happy to help in any way I can.

Neil in CA

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