Another Newbe!

phylly · #1 (**permalink**) 01-21-2009, 05:14 AM

Hello,
My name is Phylly and I am also from the "other " site. I had prodisc surgery a little over a year ago L4-S1. I did fairly well in my recovery except for my sciatica which never improved. i always felt that I had a back problem and another problem jointly so when my back improved the sciatica and leg pain did not.

My surgeon, Dr. Delamarter, did a foraminotomy 6 months later to try to decompress the nerve in my leg. Although the sciatic problem is a little better the back pain came back like a vengeance. My challenge now is to find out what to do next.

I saw Dr. Patrick Johnson at Cedars recently. He felt that I had a mechanical problem and would need to fuse the discs. He asked for a myelogram to look over area where I have so much pain from the surgery. I just received the report and it looks like I have numerous bilateral nerve root sleeve cysts at levels all along the lumbar spine.

I was most concerned about my sacral spine since so much pain is in that area but the report does not go below S1. I hope that the films show that area. I have another appointment with Dr. Johnson in two weeks to ask many questions before having this fusion (or not). I am also meeting with Dr. John Regan, Dr. Delamarter, and a local Dr. to discuss all my options.

Any input on what to ask would be helpful. Would anyone know why I would have a mechanical problem? Bending over repeatedly ( daily activities) brings on extreme pain. Could the cysts be compressing the nerves instead of the discs causing problems? Would I need a fusion if the cysts were removed? Could there also be cysts in the sacrum causing the mild cauda eqina symptoms I have? I have never heard of root sleeve cysts and it seems I have a lot. Could they have come from the other surgeries? They did not show on the last CT Myelogram that I had last April. Anyway, I do not know if cysts are something that most people have and ignore and just write in reports as filler. I was pretty surprised to see so many. Does anyone know about cysts???

I had a complete spine myelogram due the problems in my neck (prior fusion), and my thoracic spine. I guess it will be interesting to get many second opinions.

Anyway, this is my story. I am happy to hear so many familiar voices. I feel very lucky to have this site as a support and resource. Thank you all so much.
Phylly

Softball.Princess · #2 (**permalink**) 01-21-2009, 05:21 AM

Hi there,

welcome to the site. I am pretty new here as well and unfortunately have absolutely NO CLUE about any of this stuff other than I am suffering myself with pain/numbess etc.

I did notice in your history that you fell on ice. I did that myself a month ago and have been having some symptoms that I can't seem to get my dr to look into.

Anyways, I just wanted to welcome you to the site and to let you know there are some AWESOME people here who will be able to help you with the questions that you have.

Take Care,
Softball.Princess aka Raneah

phylly · #3 (**permalink**) 01-21-2009, 05:31 AM

Raneah,
Thank you for the welcome. When I fell I broke my coccyx but did not know that then. it shows now on my films. Little did I know that it was the beginning of the end and I still wonder if my tailbone moves too much sometimes when I sit.
Can you get an xray of your tailbone to check it out? I am not sure there is much to do with tailbones but it might be good info to know if it's broken.
Phylly

Gil Denis · #4 (**permalink**) 01-21-2009, 02:31 PM

Hi Phylly

Welcome to the cool site.
I also cracked my coccyx when i was climbing off a roof and the ladder kicked out.
Landed on top of the ladder right on my

Xrays and rest seems to be fine.

Gil aka Mango

Terry Allen Blackburn · #5 (**permalink**) 01-21-2009, 10:19 PM

Hi Phylly:

Is anyone left over on the other site?

I am sorry you are still struggling some. On the other hand, I also hear some improvement from previous postings as well. It sounds like you are not entirely pain free but, better than previously.

I am hopeful that we can have a nice supportive place to hang out and care about each other in the process of discovering ourselves and what will make us better.

Hang in there Phylly.

Terry Newton

mmglobal · #6 (**permalink**) 01-21-2009, 10:32 PM

Why do you suspect cysts?

I've had several clients with them and have spoken to many top surgeons at length about them... getting VERY different impressions.

If you are in So. Cal... why don't you meet me tonight at the seminar in Manhattan Beach? I'm the tall guy who's wincing because my upper back and neck freaking hurt! (OK, that will be about 1/2 of us there, except for the tall part.)

Seminar Wednesday 1/21/09 Manhattan Beach, CA

phylly · #7 (**permalink**) 01-22-2009, 04:30 AM

Mark,
Sorry I can't make Manhattan Beach.
Terry, I am trying to get my act together and make an educated best guess at my next step. It is nice to be here.
I went to a Dr. today who said cysts were not an issue? He did say that he would like to try to take out the prodiscs. He has taken out about 5. He sent me to his vascular surgeon who also said not a problem to go in again from front. I am leaning toward this. I need to get my life back and I think a fusion (first removing the discs) would be great if they can do this. I am ready to sign up and stop running around to different doctors. Maybe I should get one more opinion?
Anyway this is the latest of the news. Big decisions in the next few weeks.
Phylly

Justin · #8 (**permalink**) 01-22-2009, 04:39 AM

Hey Phylly,

I didn't see your thread until now. Good luck with your decision(s) in the next couple of weeks. Keep me posted. BTW, thanks for posting your experience in the myelogram thread.

I'm off to bed...
We'll talk soon!

Quote:

Originally Posted by phylly

Mark,
Sorry I can't make Manhattan Beach.
Terry, I am trying to get my act together and make an educated best guess at my next step. It is nice to be here.
I went to a Dr. today who said cysts were not an issue? He did say that he would like to try to take out the prodiscs. He has taken out about 5. He sent me to his vascular surgeon who also said not a problem to go in again from front. I am leaning toward this. I need to get my life back and I think a fusion (first removing the discs) would be great if they can do this. I am ready to sign up and stop running around to different doctors. Maybe I should get one more opinion?
Anyway this is the latest of the news. Big decisions in the next few weeks.
Phylly

phylly · #9 (**permalink**) 01-23-2009, 02:12 AM

I met with an orthopedic spine Dr. yesterday in my area who I had seen before my ADR's and I liked him a lot, He wants to try to take out my Prodiscs. I met with his vascular guy who said "NO problem". I know that fusing over the discs is much easier. Should I risk taking out the discs? I hate the idea of fusing over them especially with all the problems I have. I would love any opinions on this. THIS IS A HUGE SURGERY!
Phylly

mmglobal · #10 (**permalink**) 01-23-2009, 02:26 AM

Phylly,

I've been involved in several revision cases. We should talk. How many L4-5 keeled ADR's has the guy removed?

phylly · #11 (**permalink**) 01-23-2009, 02:37 AM

He said 5. I know it is not a lot but I went with the Dr. who did over 700 prodiscs and did not do well. I would love to know more about the revision surgery. I am scared to fuse over the prodiscs. The vascular guy was awesome. I know they love to operate. What would you do????

phylly · #12 (**permalink**) 01-23-2009, 02:43 AM

sorry this this disjointed but I do have bladder issues. will this become worse without surgery?

mmglobal · #13 (**permalink**) 01-23-2009, 02:49 AM

Each revision case is unique and there are no hard and fast rules that apply.

Have they talked about CT-angio to get a clear picture of your vascular situation before a repeat abdominal surgery at L4-5?

What are they trying to accomplish by removing the discs... will they also do posterior surgery or will they do a stand alone cage with screws from the front?

phylly · #14 (**permalink**) 01-23-2009, 03:43 PM

Yes they will do posterior and either bone or cage in front. I am confused about the risks of the vascular surgery. They seem extremely confident that they will try to remove the discs but may not be able to. The will support front and back. It is a more difficult surgery but I am also scared about leaving the discs in? I will ask about Ct-angio but I just had a complete CT scan of the spain. Will that show anything else. I am so healthy otherwise.
Phylly
Phylly