I am new here, so I'm not sure where to start. To make a long story short, I am a 43 year old woman who was diagnosed with a very large Tarlov cyst (about the size of a lemon) in my sacral spine in July 2008. For several years I had been battling bowel and bladder problems, and my urologist finally ordered a CT scan in his frustration. That is when the cyst was first discovered. I had a failed surgery in December 2008, where the surgeon was unable to remove the cyst nor cut off the spinal fluid supply. Basically, I had surgery for nothing and have been worse off ever since. I searched for more information and another neurosurgeon to see if I had any other options. I found Dr. Feigenbaum in KC and sent him my records. After reviewing my info he has recommended a second surgery to try to accomplish what my first surgeon was unable to do. He also found some other problems (tethered spinal cord and a pocket of trapped spinal fluid behind the cyst in my tailbone area) that need to be corrected. He is confident that he can help me.
Here is my problem. My recovery from the last surgery has been slow and grueling, and I don't know if I am willing to take the risk of another failure this soon. But time is of the essence, because I have nerve compression and bone erosion as well. And the longer I wait it will just get progressively worse. So I really don't feel that I have a choice.
Is there anyone out there who has had a failed surgery, but then a second successful surgery? How did your recovery from the first compare to the second? And I would especially love to hear from anyone who has had Dr. Feigenbaum as their neurosurgeon. I have to make this decision soon, and I am very hesitant--but I am also barely functional. Any info, advice or encouragement would be appreciated.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Second Attempt Tarlov Cyst Surgery
- By Stephanie3084
- Posted October 6, 2009 at 12:29 am · 11 replies
- In How my disease has changed my life
- Shared with the public
Explore topics in this discussion:
11 replies
- Oldest first
- Newest first
- By Maggie2300
- Posted October 6, 2009 at 5:11 am
- Report post
Stephanie
Have you tried going to Tarlov cyst foundation web site, there is a Yahoo site with a group of people who have had surgery with this Dr and I am considering surgery myself, I think this would be a good starting point for you to get a lot of opinions which may help you.
Good luck and let me know if I can help more.
Margaret
- By irma09
- Posted October 6, 2009 at 9:35 am
- Report post
You have to keep fighting. Believe there is a better life. Our prayers are with you.
- By hobo
- Posted October 6, 2009 at 1:09 pm
- Report post
I can not advise you in any way.I am sorry this is happening to you. I just wanted to say Hello and I will be praying for you.
I am around if you want to talk.
Let us know what you decied.
- By mbooth
- Posted October 7, 2009 at 10:25 am
- Report post
I had surgery with Dr. F. He is an incredibly gifted surgeon. I have to say, I'm about 80% better since my surgery 2 years ago. I do believe I am still healing.
I also have Fibromyalgia, so my pain will never go away completely.
If you would like to talk about this, email me privately with your phone number, or I will give you mine and we can talk about it. That goes for anyone who would like to talk.
Love, Hugs and Prayers,
Mary B
- By feesing
- Posted October 9, 2009 at 9:31 pm
- Report post
I am considering to send my records to Dr. F myself. A local surgeon operated on my tarlov cysts in 1993. Afterwards, and ever since, I've been in 24/7 chronic pain. Since then when I try to get a new doctor to help, they all say there is nothing they can do for me. I found Dr. F and I've tried to find just ONE negative thing, but everything I find is positive. Those who have braved the surgery say that they still have a small deal of pain, but an immensely amount less than before his surgery. They all would do it over again.
- By TNACgal
- Posted October 10, 2009 at 3:41 pm
- Report post
Stephanie... I know of several that have had 2nd surgeries and are doing better. have you visited any of the yahoo support forums? There are several for Tarlov cyst disease. The one called Straight Talk tarlov cyst is actually owned by a lady that had 2nd surgery success. You can also visit the Tarlov cyst Disease Foundation for support: www.tarlovcystfoundation.org.
I hope you get the answers that you are looking for.
- By shanondorah
- Posted October 15, 2009 at 2:54 pm
- Report post
Who did surgery #!... was it a Tarlov cyst specialist???
- By Stephanie3084
- Posted October 15, 2009 at 3:31 pm
- Report post
Thanks everyone for the encouragement and the info. I have spent many hours on the Tarlov Cyst website, and researching on the internet to get some answers. I still haven't joined any forums, mostly because I don't have much time on the computer and I haven't had the time to sign up for a discussion group.
Tentatively, my surgery is scheduled for late November/early December, as long as my insurance approves it. When they give the go ahead, we will set a specific date. Like I said before, I am not thrilled about going through surgery again, but I feel like I don't really have a choice at this point.
To answer the last question, my neurosurgeon who did the first surgery did not specialize in Tarlov cysts. He is a top notch adult & pediatric neurosurgeon in the midwest. He was very knowledgeable about Tarlov cysts, but had never operated on one. He has done around 6,000 surgeries on other types of spinal cysts, just not a Tarlov cyst. He consulted with other neurosurgeons and felt confident that he would be able to take care of my cyst. He was just in over his head after he got in there and couldn't do what he thought he would be able to do.
I didn't know about Dr. Feigenbaum at that point. And I am rather shocked and surprised that I was not referred to him in the first place, since we only live a few hours away from Kansas City. Hopefully, my first neurosurgeon will spread the word now in the medical community here in my city.
Stephanie
- By cyndiloo67
- Posted October 16, 2009 at 10:32 pm
- Report post
stephanie,sorry to hear you are in pain;my prayers are with you....i hope you dont mind sharing your symptoms ,i picked up my films today and im also looking for a doctor. i havent been diagnosed yet ,they say my tailbone has degeneration,but i swell and have pain like there is somthing there.ihope you the best please keep us informed.
- By CTDJR2008
- Posted October 18, 2009 at 12:59 pm
- Report post
I don't know the doctor you stated but I do know a lot about Tarlov cysts and their affects. I have a large one at te base of my spine that causes problems. Have you ever been evaluated for a connective tissue condition? You said you were near KC-MO, there is a Connective Tissue Disorder Clinic in St. Louis. Feel free to write to me for more information at talla@aol.com .
Jon R.
- By irma09
- Posted October 19, 2009 at 9:35 am
- Report post
Dear Stephanie,
I'm sorry you have so many problems in your spine. Perhaps al these things would have come about anyway. My daughter had the TC surgery in May 09 with Dr. F. I think the surgery went well, but now she is just starting to recover from a "setback?" from August. Her back was weakened from the surgery. She had a gruellingly slow recovery, and by the time August came, she decided to go to work no matter what. .......Well, she was down on her back Sept. 1st, and is in rehab center ever since. But, this is where we now know she should have been after the surgery. What we are hearing from the therapists is that surgeons just live in this little box. They know how to do the surgery, well very few know about this one. They do not offer any advice as to what to do a few months down the road. If the surgeons would just get a group together to work with the patient if they have a rough time I understand there are a few out there that just recover, well that is not the norm. Therapy is bringing her back to us, but it is so slow. Tammy still says she would have the surgery again, because the MRI's look good the four bad cysts are gone. She feels bad for the people who are afraid to do it, but if they don't they will just "rot away" in her words. Just have the surgery. Dr. Frank knows that part of it, but if you have any problems afterward, know that you have to find good therapy team. We were lucky, the therapist working on Tam has treated TC's before and helped those people. So...... he will help Tammy as well. Just remember, the surgeon alone is not enough. You need a good pain doc, and a good therapist, and a loving family. Diane from IA
Add to the discussion