Quote:
Originally Posted by Annette
Hi Barb,
I am 42 & this started 5 mo. ago. I do know that I had the cyst 3 years ago, but at that time, the physical therapist didn't make any big deal about it. Plus I didn't have any complications except for chronic lower back pain at that time.
Here's my point..........I don't want to get to the point to where it is disabling for me. I am too young for that. I still work & enjoy my job. I love working in my yard in the summer, taking vacations, etc. I'm trying to be optimistic about it. I do pray a lot & always seek God for guideance/direction/healing. I'm not giving up hope. I want to continue to enjoy life, travel, & enjoy my grandsons.
I am so sorry that the disease has confined you to your home. I will keep you in my prayers as well. I do know God is BIGGER than all things. If it's His will, He can heal each of us. God never promised us a good life here on earth. He did promise that each of us would go through trials. And with trials, it builds strength, our character & helps us to perservere another day and helps us to help others going through similar situations. Just like us. 
All the information you have provided has been helpful. Thank you. In the meantime, until we both find the right Drs. who are experienced with these cysts, I will keep praying for healing for both of us. You'll be amazed of what the power of prayer can do.
Again, thanks for all your info. & support.
Annette - IL |
Hi Annette and Barb,
I am 40 years old and was diagnosed in April with a large Tarlov Cyst that starts at my tailbone and has grown through the Sacral bone. I have been to 2 surgeons that will not touch this but both have instructed me to seek a surgeon that will. I went to a surgeon in Seattle last week and was told it was between 3 and 4cm in size (the biggest one they have seen yet). I was also told that I was a candidate for surgery but the risks involved are very scary. Basically, the decision is up to me and there are no guarantees. The surgeon's name is John K. Hsiang, MD, PhD and was recommended by another surgeon at Stanford. He's done 10 surgeries in 2 years and has a pretty good success rate but was very honest and told me that I could be that one that doesn't work out too well. Appreciated the honesty but not really what I wanted to hear. I am still going to check out Dr. Donlin Long at Johns Hopkins who is supposed to be the best. There is also another doctor in Kansas City named Dr. Frank Feigenbaum...both of them are my next step.
Personally, I am still able to work but the pain is getting increasing difficult to deal with. I have burning in my tailbone and sciatic nerve pain down both legs as my cysts is located in the middle of the sacram. I have been seeing a pain management specialist here in Portland, OR at OHSU. I am on 200mg of Tramadol daily and so far it has allowed me to keep working but that's about it. I am unable to exercise or really do anything other than sit or lay down.
I am continuing my search for the right surgeon as letting this grow any larger could cause permanent nerve damage to the bowl and/or bladder. As I find more information I will post the outcome.
If anyone out there has had the surgery, I would really like to hear what procedure was done and if it worked. According to the surgeon I saw last week, there is not much info and they are just now collecting data. Long term results of surgery are not available.
My thoughts are with you both and know you're not alone. From what I've been reading there are alot of us out there seeking answers.
Gabrielle
Portland, OR