Monday, March 12, 2007

Good/Bad News


The good news is I don't have Kidney Stones. The bad news is I now have been diagnosed with Sacroiliitis. I've had Scoliosis, most likely since I was 14, which is curvature of the spine. When I grew up parents did not know what to look for in a child with Scoliosis as its not painful when growing up. Now days they test for it in some schools and parents are more keen on the subject.
The doctor sent me home today with pain pills. Right now I am doing research on Sacroiliitis. Although I'm relieved the pain is not kidney stones I am now concerned with how much Sacroiliitis is going to effect my life.
I will be going for second and third opinions. I wish I could go to Dr. House! If anybody reading this is familiar with Sacroiliitis and/or Scoliosis please comment and tell me about it. The more firsthand information I can learn the better.

10 comments:

Riverbrat said...

Gosh, sorry to hear about your Scoliosis. Jim and I both know kids who were discovered to have this but I don't know of any adults right off hand or what to do about it. I think if I were you I would research it also and maybe see a couple of doctors for different ideas on what to do about it. I wonder if it is too late to go the back brace route to try and keep it from getting worse or reverse it.

Jim said...

I'm thinking about you and hoping things take a positive turn.

You've probably already found this, but in case not and in case you might find it useful:

http://www.back.com/causes-inflammatory-sacrolitis.html
The link to find a doctor: http://www.back.com/findadoctor.html
I typed in just Alaska and got a list of 10 doctors (most or all in Anchorage) who might be resources for your other medical opinions.

Again, I'm thinking about you and sending all the best wishes.

FishTaxi said...

In my research I found that sitting for long periods of time aggravates it. So, I moved my computer set up to now I stand up straight and surf the net.

I believe I have CBS (computer butt syndrome)!

Its been a long winter:)

onthebus said...

Gosh poor Fish Taxi...I'm wishing you well. I don't know anything about sacrolitis. I had terrible sciatica for a couple years. So I know back stuff. Lot's of acupuncture, highly recommended. Rest. Even when you think you are resting you are probably not resting enuf! And though I sometimes choke on the word because it sounds new agey...positive thought and prayer. It works! Lot's of love and healing sent your way.

Anonymous said...

Does this mean you can drink beer again? Seriously, I hope you feel better soon. Jimmy

FishTaxi said...

Thanks everybody.

Jimbob - I heard you on the radio last night. Where else in the world does the radioman talk to you but on Whole Wheat Radio out of Talkeetna, Alaska! Thanks for the links internet buddy:)

Jimmy - Popping pain pills so I better not have any beer(:

Onthebus - I'll check into accupuncture. We do have a lady who comes to Valdez once a month or so. A friend quit smoking with accupuncture!

Riverbrat - Too late for a brace for me. Who knows if the scoliosis and the sacroliitis are even related. The scoliosis never bothered me. The sacroliitis feels like a cracked pelvis. owie-owie

Niki R. said...

I never heard of this either, and I didn't know you had anything when you were younger. Is it a progressive thing? Please take good care of yourself and don't trust the doctors and don't trust their drugs. Are we sure this isn't caused by Haarp? (heh)I'm praying for a swift recovery so we can make big plans for this summer!

Barb said...

Oh Kathy I've never heard of either of those ailments.

I'm having problems staying on this site so I'm just going to wish you a speady recovery and you're in my prayers

Anonymous said...

First I heard of scoliosis was in college from the HPER lecturer, who used me as a subject and I found out I had a medium case. It has not interferred greatly with my life, as I hope sacroiliitis does not with yours!

ElmasnoJ

TundraDawg said...

Some advice from my sister (who has been diagnosed with just about every spinal disease/disorder):

Medline and SpineUniverse are pretty reliable sources of information. Sacroiliitis is rarely diagnosed these days. If you have not had an MRI, it's really important to know what's going on in there. I have degenerative osteoarthritis in my lower spine. I have had two large synovial cysts at L 4-5 (one on either side), and a completely ruptured disk. There is considerable desiccation of the two disks above that one. That means that instead of having a gel filled cushion, I have a brittle, more wafer-like disk that will actually crumble and release pieces into the spinal canal. The problem behind the problems is called spondylolithesis, which is a big word for joint instability caused by the arthritis. The vertebrae are moving in directions they were never intended to move. This causes the facet joints to leak fluid into the canal, which forms the cysts.

I have a mild degree of scoliosis and am quite bow-legged. Since I am 55, these were not detected when I was young and they could have been helped. I'm sure my body's ways of compensating have contributed to my current situation, but this is what I have to deal with.

I have had two "failed" back surgeries in 13 months, and am due for a third surgery next week. The first two surgeries were not incompetent, so much as they were incomplete: the doctors who performed them did not have the training to look for the ultimate cause of the cyst or ruptured disk they were treating.

My very best advice to you - and I congratulate you on seeking multiple opinions! - is to consult the very best specialist you can find, before doing anything. I first saw a good local orthopedist, who removed a spinal cyst. Then I saw a good local neurosurgeon, who performed a microdiskectomy and laminotomy. Now, I am in the hands of one of the top neurosurgeons in the country, Harvard trained, who does nothing but spine surgery, using minimally invasive procedures whenever possible. He will be doing a fusion of that joint, using the best techniques and materials available. Unfortunately, a lot of his patients are like me: they see him as a last resort, and he gets to fix someone else's screwup(s). With each spine surgery you have, your chances of the next one being successful are reduced, due to buildup of scar tissue and general trauma to the nerves. Mind you, I have now been in severe pain for two years and have lost my job and most of my quality of life.

Consider the doctor's age when doing this. Experience is important, but an older doctor may not know the latest technology to help you with the least trauma. My current neurosurgeon is at Rush hospital in Chicago, which is about 1-1/2 hours from my home. He is probably under 40, incredibly bright, and passionate about his work. He does not need the money from my surgery to pay for a nice new facility (like some of our local docs). He does research in spinal outcomes (the results of spinal surgery). The only thing I don't care for much, is going to a large city hospital. I prefer the more personal atmosphere of our local facility. However, the quality of my surgery is critical to how I am able to live the rest of my life.

Beware of doctors who are in a private practice, especially if they have just built or are building a new facility, or they young enough to still be paying off student loans. My husband had a "minor" foot surgery last year and got staph A. at Christmas; the doctor on call did not even have him go to our local emergency room. By the time he was seen in the doctor's office, Paul lost part of his foot (the bone was completely infected and had disintegrated) and needed a second surgery and six weeks of IV antibiotics. We later found out that the surgeon was performing up to nine surgeries per day. Ask the doctor, or one of his staff, how many surgeries he does in a day, or a week, and what his infection rate is. Too bad if he is offended.

Since your spine is involved, I would recommend researching online until you find a top quality neurosurgeon who will consult with you. Mayo has great doctors. U.S. News does a special issue each year on the top hospitals for various health problems, and that issue should be available online or at your public library. If necessary, be willing to travel to get the best opinion you can. Make sure you ask questions. Bring someone with you who can also gather information and impressions. If you need surgery, try to have someone with you who can watch out for you when you are out of it.

The other thing I learned - and this was a hard lesson - was that doctors will send you to physical therapy (which is fine) and when you say you're still in pain, they will come up with a name for it and tell you they have done all they can. The suggestion is, it's all in your head, and you're a whiner or a hypochondriac. Guess what: when physical therapy caused me more pain, and it didn't go away after ice/heat/rest/anti-inflammatories, there was a real reason for the pain. Listen to your body. I have yet to be wrong, even when I would have preferred to not have another surgery to deal with.

I wish you the best of luck with your search. Don't give up! But don't go for the first "sales pitch" you get from a surgeon.