Many issues. interstitial cystitis, Ibs, Highblood pressure, confused and Frustrated.

YoyoyoMo,nica · Post by **YoyoyoMo,nica** » Mon Oct 29, 2007 6:01 am

I have been suffering with Extreme back pain off and on for 11 years. This last year seems to be pretty chronic. I cant seem to bend and When I sneeze or cough or laugh in a standing up position somtimes I fall. I pray I am near a wall or chair or somthing to help hold me up. I have to do alot of wall walking (with my hands) just to get around. I have disc issues in my spine in the S-5 L-1 and L-2 regions. I have been in PT off and on for 3 years. I just got my MRI in March. I just got to see a surgeon for the first time. He is very highly recommended. and he is NOT quick to put me under the knife. BUT I was a BASKET case at that appt. He said "all I see is a young girl in alot of pain and I dont know how to fix u" I Cried even harder. I have a LONG list of docs to see and I have fulfilled some of those appointments. I had a colonoscopy. I was scared and the result was a pretty good case of IBS. He removed some polyups and one of them was just in time. I have been laxitive dependent for 30 years. He took me off of all of that. And placed me on a HIGH fiber diet. I had a episode last weekend and ended up in the ER. I got flushed out and now this week so far so good. Now I have went to the Gynecologyst to rule out Endometriosis. Well I was told I have this too. But she also thinks I have interstitial cystitis (ic). I have a test done November 19th That if it comes back positive It might be the cause of some of the back pain. If this dosent help then I have to have a discogram if that is positive then I am faced with spinal fusion. This really stinks. And it is killing me day by day.

They want to put me on cymbalta But I dont have insurance and I cant afford it. I have had to turn down lots of differnet meds cause of no insurance.

Has anybody had treatment for IC and or a hysterectomy Had any relief in back pain?
Has anybody had the spinal fusion and came out good?

Dana Gann · Post by **Dana Gann** » Mon Oct 29, 2007 6:26 am

Living in pain for so many years can make you feel like you're going crazy not to mention the severe depression it causes! My spine was broken in a car accident between L4 & L5. I was only 32 years old. When that happened, my pelvis shifted at a 63 degree angle. The tip of my spine was protruding out of my back. I can't tell you the pain!!! Anyway, long story short, I had a very radical anterior/posterior spinal fusion done with a lot of instrumentation (8 hour surgery). 2 cages, 2 rods, and coils holding my pelvis in place. Getting ready and going thru the surgery was the scariest thing I've ever gone thru in my life! But when you are in pain like you are, for such a long time, you really don't have any good options but to have the surgery. My spinal fusion surgery was the best thing I could have done! Even though I was in pain from the surgery, the horrible pain I was in was immediately gone. If they have to take bone for the fusion DO NOT let them take hip bone. They used my hip bone to fuse me, and 7 years later I had to have total left hip joint replacement because of it. That surgery was a lot harder to recover from than the spinal fusion was. My hip still gives me problems and I don't want to see you go thru that.

I hope this info helps you make the right decision for yourself.
Dana

YoyoyoMo,nica · Post by **YoyoyoMo,nica** » Mon Oct 29, 2007 3:06 pm

OH MY GOODNESS Dana. You are a walking Miracle. Girl I am sure your pain was much much more then mine is. I hurt just reading your post. Thank you so much for the tips. I am so glad that my doctors are taking the time to rule out every possible thing before putting me under the knife. You are the first person that I have known that has said that fusion helped them. But in your case U really had no choice. I dont know if I have choices, yet. I am hoping to get some answers soon.
thanks for replying, I am just awestruck about your story. U are a miracle.
Monica

Debbie1111 · Post by **Debbie1111** » Mon Oct 29, 2007 3:48 pm

MoNica, I'm so sorry you are having to go through so much!

I had a double disc fusion in 2001 due to two bone spurs flattening out my spinal cord, I also had bulging discs. The surgeon fused C5-6-7 together. (Upper cervical neck area.) I was living with the pain, the bigger fear was potential paralysis at some point. If I hadn't had it done, and was in a car accident, they told me it was a very real possibility that I could become paralyzed.

I had several MRIs, about 2 years apart. They knew I had the problem, but said it was too soon to operate. On several different occasions, I had bursitis in both shoulders that came very close to a frozen shoulder and had a lot of PT. When I started having pain and tingling down my arms, I went back for the second MRI. And, from the point I had my last MRI until surgery (about 1 month) the problem had gotten much worse.

The areas of the spine are very different in their treatment, but mine was a success. I won't say I wasn't afraid, I was terrified, but the alternative was even worse. And though it sounds scary having 3 discs fused together in the neck, I have lost very little rotation because of it. Only the dr. can tell.

I do see a chiropractor now. I have another bone spur growing, but so far he is keeping it at bay by doing adjustments. One thing I do know from this experience, when you have fusions, at some point in the future, the disks above and below cancan have problems.

Take one step at a time, one problem at a time, it's all you can do. At least they have identified this problem, so it gives you something to work with. A goal to achieve and get past. I wish you the very best.

Debbie

YoyoyoMo,nica · Post by **YoyoyoMo,nica** » Fri Nov 02, 2007 1:40 am

OH MY Debbie, Are you glad that U did it? Do u feel better? I am sooo afraid of doing a fusion for the simple reason is I can make other things worse. I didnt realize that U can make disks below and above have problems. This is discouraging.

Is it better to just be in a wheelchair? it sounds good to me. That might be a option soon.

See my Picture? This is me at youth camp. I have volunteered all of my time for 3 years in a row. I SOOO LOOK FORWARD TO CAMP. But I have gotten worse. And I will be no good to them anymore soon. I have been a Pathfinder co-leader for years. WE were very active in Youth group till this last year. I LOVE KIDS. It has always been a mission of mine to make sure the kids feel always welcome and a part of our church. This is about the only time I can feel really strong and anxiety free, is when I am doing somthing for the kids. I love to Hike, bike, walk, skate, skateboard,

and be with my family and children. I can hardly work anymore. (daycare) It involves lifting kids. My life feels like it is going down the toilet.

Dana Gann · Post by **Dana Gann** » Sun Nov 04, 2007 10:01 am

Monica,
Sorry it took so long to reply. It's hard to find everything we've put out there.

I have been truly blessed in spite of it all. I would love to hear from you as you go thru this process. I will support you no matter what you choose to do. I KNOW YOUR PAIN!

God Bless,
Dana

~*schnauzermom*~ · Post by **~*schnauzermom*~** » Sun Nov 04, 2007 10:10 am

<A HREF="http://www.lilly.com/products/access/di ... html#PPARx" TARGET=_blank>http://www.lilly.com/products/access/di ... l#PPARx</A>

This is the link for Eli Lilly patient assistance program. You may qualify for meds through them. Different drug manufactures have different requirements. I hope you can feel better soon.

YoyoyoMo,nica · Post by **YoyoyoMo,nica** » Wed Nov 07, 2007 6:00 am

Thank u for the tip Liz. I wish I could feel better. I feel like I am beating a dead horse. I will give that a try. How have u been?
Monica

~*schnauzermom*~ · Post by **~*schnauzermom*~** » Thu Nov 08, 2007 3:43 pm

Monica, Thanks for asking. I do hope you are feeling better. Hope the kids and your honey are well too.

I know it is tough when you feel as if a truck ran you over. I try to tell myself that it will be better, keep that positive self talk going. I have been hanging in there. Got Barium toxicity and am seeing a Toxicologist (our water/air quality here may be the cause) and I saw a new endo and have orders for more blood test for the thyroid. Par for the course. School has been quiet busy too and I am tired. All in all things are not at all that bad, so I will take it.

Hope you faired well with the PAP people at Lilly.

lifeinchaos · Post by **lifeinchaos** » Fri Dec 07, 2007 7:27 am

I feel for you. I also have IC, IBS, endometriosis, herniated L4-5 and now something going on with my neck. I had the procedure to diagnose the IC - it was no sweat! The IC can be treated very easily it will never go away but there are oral meds and/or meds they treat internally in your bladder. the best med when the ic flares up is pyridium - it sort of numbs the bladder. don't worry it does not make you lose control. It just changes the color of your urine - be careful it will stain. My mom had spinal fusion it worked great but she damaged it again and is going for the silicone disks. They are fabulous and should have been used a long time ago for people. I take the most wonderful fiber and vitamin supplements for my IBS as well as for the other cronic infections I used to get. I now only have 1/10th the problems I used to have - except for the back problems. hang in there and be strong!