My life has changed totally

Theresa -

Posted 2008-11-30

My name is Theresa and am a 53 year old female and I have suffered for two years with pain starting in my coccyx. I was already going to a Rheumotologist who just gave me a cortisone (kenolog - long lasting) shot right at the tailend of my coccyx (just blind shot.....I showed him exactly where the pain was). Anyway, the first shot lasted for about six months. I was working at the time, sitting most of the time. After the first six months, I started needing a shot every three months.

Well, the pain started spreading upward until the pain was from the tip of my tailbone to my lower lumbar disc. One cortisone shot was no long doing much so I sought help from my Internist Dr. and he sent me to a Rehabilitation Dr. who works with Neuro Dr.'s and a Pain Management Dr. Anyway, he ordered a ganglion impar bloc and caudal ligament using fluoroscopy. He also did an injection in the lumbar region because I have arthritis there. In three days I had absolutely NO pain. I haven't felt that good in years. He used a numbing (temporary) medicine and kenolog cortisone. Eleven days later I was in the ER with an electric nerve coming off the right side of my sacrum down my leg into my foot. I told the ER Dr. that I had to catch a flight out that Tuesday and to please help. He gave me a cortisone shot, a pain shot and a prescription of Perocet to take on the trip. Also, a Medrol Pac to start the next morning. Next morning I felt great and my trip was wonderful.

After about ten days from the block, I could feel the nerves (ganglion impar) start to come alive and ache. Prior to the block, I had put a pain patch on for 17 hours and took it off because I still could not sit down. No pain, but it felt like I was sitting on a baseball. The Dr. put me on Lyrica for the electric nerve and has ordered another pain block exactly like the previous one. So, my first block was on Oct. 20 and my second will be on Dec. 2.

I am not healed yet by any means, however, I feel as though some questions have been answered. First, I know now this is inflammation of the ganglion impar nerves. Since my last block I ache and the pain is much, however, I don't feel I have gotten back to the swelling I was before. I still have to take pain meds, use Flector Patches for the lower lumbar disc and I also use Voltaren Gel and pill form (need prescription for both).

My life has changed totally. I was feeling great before with our last child being a senior in High School and was looking forward to a bright future for my husband and I. This has definitely been a detour. Had to quit my job over a year ago because I couldn't sit anymore. I was constantly "flared up". I cannot sit in anything soft and forget the cushions. I sit in hard, straightback chairs for short periods of time. If I eat out, I have to sit at a table with chair rather than booths. At home, I sit at kitchen table with staightback or lay on my left side in bed or on floor to watch TV. I'm trying to cope.

So, now after this block this Tuesday we will see how long it will take the pain away. I see my Rheumotologist the beginning of Feb. and I will discuss with him any options I might have for inflamation control so all of this won't get out of hand. It may be out of control by the time I see him and it may not. A daily regime of cortisone is not an ideal solution but neither is being in pain and not having a life.

Hang in there all of you that are suffering from this. There has got to be viable solutions and as long as we can read what each others experiences are and solutions, we are one step closer to having our lives back. Good luck to all and I will update later.

Update, 2009-01-11

I meant to update after the December 2 nerve block but this is what's going on. On the second nerve block the pain Dr. decided he was going to go in the S1 joints since most of my pain at the time was the upper sacrum and lower lumbar. I was really disappointed in the beginning, as the sheet they gave me upon leaving the hospital stated maximal results would not be seen until 6-12 days. Well, it took 3 weeks for me and the recovery was rougher than the first one just going into the ganglion impar nerves, lower on the spine. Anyway, the sacral area still is painful. It is painful more on the right side and the electric nerve is still there. It came back 5 days after this block. Again, this electric nerve was courtesy of the first block! I can get REALLY frustrated if I dwell but I am depressed I cannot work or sit like a normal person.

I am seeing a new Pain Doc this Thursday and he uses Radio Frequency method. Not sure exactly how he does this point I don't hardly care. I know there are suppose to be different kinds so I shall see.

I went to my 4th visit to a Chiro this past week. Doing stretches but after this last adjustment by nighttime all those nerves in my sacrum were killing me! I'm thinking I won't go back....I don't need more pain added to pain but I will continue the stretching just because if feels good!

Everyone, Keep the Faith and if anyone knows a Dr. near Birmingham, AL, let me know!

Update, 2009-08-29

Hello All. I wanted to finally update and let you know all the money, time, total focus, on trying to get relief. I swore to myself I would have something done by the end of 2009. Since my last update was the nerve blocks, I will start there.

Second pain block, the Pain Doc went into the si joints in sacrum. Pain lasted a good two weeks and NOTHING. I called and let his nurse know and they say this is all he can do to help. He stated to me he has another patient with the same problem and she just wants the coccyx removed. Anyway, after that I tried a sacrum wedgie which a lot of people on this site has tried. I ordered online and it did help somewhat and I am sitting on it now in a straight back, kitchen chair. This, however, is not solving the problem.

I made a trip to Jacksonville, FL to see Dr. Keller ((see Doctors and specialists in the USA, Florida). Very nice Doc. I thought FOR SURE it was the joint holding the coccyx to the sacrum so I had a pain block (awake....not bad) done at the Hospital Dr. Keller works. Did absolutely nothing.....came home and was discouraged. Called Dr. Keller's office and told his assistant the ONLY thing that ever gave any relief now was the 1st Ganglion Impar Block for 10 whole days. She called back and said Dr. Keller advised me to have another Ganglion Impar block. Well, that's where it gets complicated here in AL. My rheumatologist asked in his hospital (who I am not in that system and I want to change after all of this ordeal) and anesthetist doesn't know what that is and never even heard of it.

So, I, from the request at the hospital who doesn't want to see me anymore (they no longer have to worry about that AFTER yesterday) sent my records to Mayo Pain Clinic in Jacksonville. Only for evaluation. I am trying to get an appt. with a new pain doc to get me thru until I can get a solution. Yesterday, I spent 7 hours in ER just for a shot to break the cycle. Also gave me cortisone shot with Medpack, plus pain shot. Took pain to level 3. Dr. Keller is the ONLY ortho doc I have seen. Now my sacrum, right si joint and right hip is a problem. My si joint in my sacrum has popped out. My rheumatologist (great doc) gave me a shot right in that joint but to no avail. I would REALLY like to have a dr. in my state (AL) because I don't have funds to fly all over the world.Anyway, also I went to visit in Atlanta, Bryan Ruchin (see Doctors and specialists in the USA, Georgia) and he internally manipulated the coccyx. He said it was lying the left side. It didn't take away the pain. In fact, afterward that joint KILLED me for a few weeks. Ice. I have a call into him now about going to the next step, however, he has not returned the call as of yet. I am sure the MD is in another state.

So, far now, I am looking for another Ganglion Impar Block (hopefully, from new pain doc) and will go to Mayo. Please e-mail me if anyone with this problem has gone to Mayo Pain in Jacksonville, FL.

Thank you, Jon, for this website. What a calling and I appreciated all e-mails about experiences and treatments. Will update again after Mayo visit.

Update, 2010-10-03

Well, I believe the last time I posted was at the end of 2009 and I was going to Mayo Pain Clinic in Jacksonville, FL. I'll start from there because everything else I have done prior to this has already been posted. OK..... FORGET MAYO CLINIC. I saw a Physical & Rehab Dr. who was a jerk. He informed me that nothing was wrong with me and that if my coccyx needed "adjustment" I should just go back to the person I saw in Atlanta and get it "adjusted". A total waste of time, money and worse, hope. So, I felt I had done it ALL by now. The only relief I have had in these past several years of incredible pain was when I got the Ganglion Impar block. However, they are the ones that sent me to Mayo because they released me saying they could do no more for me.

Then, come Feb. of 2010, my husband and I were driving over to New Orleans to see a friend of his and I became very ill with a chest cold. I called my Dr. (I have asthma) & she called me in a cortisone med. Not a blast pack but a double blast with includes cortisone... 60 mg. for 2 days, 50 mg. for 2 days, 40 mg. for 2 days, etc. until I ended with 1 10 mg. for 2 days. I was doing exercises for an si joint (hypermobile) that stayed out continuously for months. Anyway, on the 3rd day of taking cortisone, I realized I had NO PAIN.... I was shocked because I wasn't expecting it. It stayed that way until about the 3rd or 4th day OFF the cortisone. All I have been doing since is taking my pain pills, taking Voltaren & using Flector Patches because pain starts at the tip of my coccyx up to my lower back.

What this showed me was that the ONLY 2 times I've gotton relief was when I used cortisone (an anti-inflamatory). I have talked to my Internist Dr. and my Rheumatologist. They would rather me take pain meds which don't even work unless I take 2 and then that lasts only a few hours NOT sitting. I am like most of the sufferers that have spent TOO MUCH time & money trying to be evaluated by Dr.'s that don't understand the severity of the pain!

I bought myself a new VW Bug and I plan on a trip alone next week. I have cortisone from my Pulmonary Dr. for my asthma....I will start it 2 days prior to my drive. It is a sad state of affairs when Dr.'s would rather you burn out the receptors in your spinal column with pain meds. than to try & find a way for me to take cortisone for relief. I know that both drugs are double-edged swords.

My pain has GOT to be inflammation because the only relief I have EVER experienced was while cortisone was being used.....for the Ganglion Impar block and me taking cortisone orally for a chest infection.

That's it!!! I am now 56 yrs. old and this still RULES my life. My son who works for an airline has begged me to go on all of these free, wonderful, airline trips to places all over the world and I CANNOT do it. No way I can chance that! I'm still waiting for the miracle to happen! If my miracle cure comes, I will definitely post!!

Theresa D.

For now, that's it!! I will continue to read updates & pray that we ALL find sweet relief from this indescribable pain! To all, keep searching.

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