Life after Tarlov cyst surgery

My daughter had TC surgery done in K. City, on May 19th 09 by Dr Fiegenbaum. I think he is one of the handful of Nueros in the country who knows how to do the surgery. Most neuros told her that Tarlov cysts do not cause any problems. WRONG!! We had a benefit for her in May that brought in a lot of money or so we thought. Her money is gone now, she has applied for disability, they drag it on. She can't work yet, as she still has post op pain, it could take up to a year to be pain free if ever. How do you get the government to listen. I read not to long ago that any one with a rare disease would get disability in about two weeks, this has been three months. Does any one have any ideas of how we can get this going. She needs help bad.
Yes, Tarlov Cysts disease is a rare disease. The pain still keeps her on her back most of the day.
Thank you Irma65

Edited September 2, 2009 at 9:50 am

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Hi Irma

I am so sorry to hear your daughter is still suffering so much pain, as I had heard this Dr has gotten people up and back to work quite soon, and I was thinking of coming from Australia to see him. Can you tell me how much the surgery cost??? I am so sorry it is taking so long to get any assistance, this seem to be a problem in the US, but not so much here, but then again we don't have Doctors to do the surgery.
I wish you luck in getting some help for disability and am sure others here will have help for you.
Give her my love and I know the helplessness you are feeling.

Maggie xxxx

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Dear Maggie2300
I still strongly suggest Dr. Frank Fiegenbaum of Midwest Neurosurgery, Kansas City, MO for your surgery. The surgery bill was $82,000, hospital was $100,000, doctor bill was 50,000. I believe those numbers are close. Tammy told me what they were, however insurance won't pay that much. They tell them what they will pay and they have to settle for that amount. Do you have insurance? My daughter is still worried about how much she will have to pay out of pocket, not too much if she can't work. You better not worry about the cost, you have to have it done. Just get all your medical info and send it to the clinic then the doctor will call you if he thinks he can help you by seeing the MRI's. He then will set up an appointment for surgery. You do it all in one trip. You go down on a Monday have a consultation and then on Tuesday you will have surgery, you have to stay in KC for about a total of 10 days, you see him before you go home and that is it. He just needs to see MRI's at 3 month intervals for a year. You must remember that the surgery works different for everyone, relief could be 3-6-9-or 12 months from surgery. You may be left with nerve damage, Tammy had nerve damage going in already, because she had these things since 2004, but couldn't find a doctor who believed that these were the cause of her pain.
You can get the phone number of the clinic from the Tarlov Cyst disease site.
Lots of luck, I will pray for you. Irma09

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I'm so sorry you are so stressed with finances while your daughter still suffers. I'll pray for you all.

I too am having surgery with Dr. F in October; I'm am very concerned about the complications after. My only discomfort is sitting. He says it will only get worse if I let it go. I teach school so stand all day. Why can't your daughter stand much? Why is she still on pain meds? It's been 3 months! Did she have any other complications besides the incision area? Did she have back aches? I put this off for months worried about the future. My problems seem so small in comparison to yours--sorry to whine, but it's just been on my mind so long. Thanks for reading. Loisrose

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hi everyone, i think all our questions are up front on our minds however first come first, irma, best wishes for an even speedier recovery for your daughter as well as your family. this takes so much out of more then just the person suffering with the tartov cyst (me).

i applied for social security disability (i'm from mass) back in 2001 when all this horrific pain started up for me (actually it started in 2000) and the tarlov cyst was so very new to the medical field as well as to us people back then that i was denied, yet my pain was so very noticeable and way past a 10+ (sadly enough) a year later, and after an appeal, i was approved. they do approve you back to the date you first filed so please do not let this go and re-file or just give up. your daughter deserves the help (and the peace of mind as well)

she should or could even be eligible for medicare of some sort. it is unreal the way we are treated when we are down and out. we do not have much lower we can go so it as if they start to kick us. keep you chin(s) up and dont give up the fight. we are all here for you and ignore those who are not, life is too short.

i had my tailbone removed in 2005 thinking it would help and it actually did but only for 7 months or so due to prior nerve damange. my tarlov cyst is only 3cm so not so so big but it is embedded into the bone and i can hardly stand up long enough to feed my cats (2 girls), brush my teeth and get my am coffee without wanting to laydown again and/or have to cry in pain.

keep us posted and i welcome any new information as well. irma i'm also hoping she is getting help with prescriptions also.

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Hi Lois Rose,
Tammy has the most problem sitting. But, as far as pain, it is different than before surgery, but still hurts bad, some days worse than others. She is going to a pain clinic the end of this month, so far they have not done her any good. Injections in the spine only cause weakening of the spine. They never helped her. She is getting some relief from Physical therapy right now. We will never give up hope. She is too young to live such a horrible life.
Irma 09

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Thank you for caring Destiny. The only people that you can really talk to about this disease are those who have it or are caregivers. So it is important that we have this link. God Bless, Irma 09

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Hi Irma
Thanks for the figures for the amount of the surgery etc. I have already sent all my info to Dr F about 3 weeks ago and am still waiting for a reply, but from the figures you mentioned it would be impossible to come and have the surgery anyway as my health insurance doesn't cover anything outside of Australia, and unless I could get the government to help out, which I think is impossible I just will have to live with the pain, as I was diagonosed in '92 and have already had several surgeries which have only made things worse. Hope your daughter gets better soon, I have heard great things about her Doctor so I will say a prayer for her

Maggie

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Maggie, I wish I hadn't shared the numbers with you. You really need to have the surgery. You need to get on social security disability, then they have to pay, or as I said before they will make a deal with the doctors hospitals etc. and only charge what they want to pay, what is fair and customary. Tammy's insurance company told her that. You will have a miserable life if you don't go. I say that only because we still believe that Tammy is going to get better. The recovery is different for everyone. Oh please don't give up. I feel responsible for telling you about the cost. Please take care of your self. It is an awful disease but a lot of people get relief much sooner than our girl. There was a 65 year old woman at the hospital who had surgery day before Tam and she appeared to be fine. I went and talked to her and she was wanting to go home. She had no pain????? Who can figure!
Please, reconsider. In the name of Jesus Christ, Diane

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Hi Diane

Don't feel bad about telling the costs, I am on a disability pension now, but this is only for Australia and won't pay any costs out of the country, I know I should give it a try but it would also be at least a 30 hours flight there and home and as you know with the sitting issue this is a big problem as well, as I am concerned that even if the surgery worked and I found the money having to fly so far home would undo all the good work, I am keeping my fingers crossed that Dr F may know of a surgeon in Australia that may have checked out his surgery and may be able to do the surgery here, then I would have no cost problems, but also all my cysts are now filling the whole sacrum and this makes it more dangerous to touch, probably why I havent heard from his,hope he is thinking about a solution. If he could come up with something to help maybe I could help all the people in Australia who have no hope at the moment.
Many thanks for your caring
Maggie

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Dear Maggie,
I am so sorry to hear about your insurance situation. The government really needs to get involved as long as they look at the ones that really need it first. They won't, they will make sure that all the big shots are set first. In my opinion they already are. You have been dealing with this for so long, as my daughter it was in 2002 that she was off work for quite a while with a "bad back". Then in 2004 an MRI revealed the tarlov cysts, but her family Dr at that time did not think they were important at all. Well, then last year when she went first out to Baltimore Maryland to John's Hopkins Clinic, where a reknown doctor there told her what they were and that they were symptatic, but he wasn't well enough to do the surgery. Can you believe that. Our youngest daughter paid for the expense of that trip, the only thing good that came out of that was that we knew then we had to keep searcing. Tarlov Cyst Foundation is where we found out about Dr. Fiebenbaum in K. City.
Yesterday, my daughter had a bad set back, she had been trying to go to work maybe 3 hours at a time, and then she would get groceries, go to her therapy appointment. Well, I guess that was too much. She ended up in ER last night to have a shot of Toradol which is a muscle relaxer. It got her through the night, but today she can't even move without extreme pain. It is like we are back to before surgery. We pray and pray as this is all we can do and of course believe that God will relieve her this pain in his own time. It is so hard. She is almost at 4 months out of surgery. But she had a lot of cysts, two that he didn't even treat. She had nerve damage going in and it has only gotten worse since the surgery. Ya know, it's like you just can't see the light at the end. Oh, I am sorry rambling on, but as I have said before only people or family of people with this disease know how horrible and dibilatating it is, and you really understand the pain and anguish. I ask for all your prayers once again.
Irma 09 from Iowa

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Irma, That is terrible to hear, has she contacted Dr F to see what may have gone wrong??? I think maybe she should still take it a bit slower as I know when I had my first surgery in '92 I was really stupid looking back as I thought by 6 weeks I was feeling great and started going straight back to my normal dutes and was good for about 2 months then things started to unravel big time. Hope things improve soon.

Maggie

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Maggie,
Dr. Fiegenbaums staff now say that she probably went back to work to soon. I wish they would just tell you not to go back to work until you have no pain, or six months, or something other than, it is different with everyone, just do what you think you can do. We know now that she did push too hard last week by working 3 hours and then going to therapy walking the dog etc. Now she is down on her back again like before surgery. I think I will be going over and staying with her for a while again. Please pray for us.
Diane, Iowa

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hi again everyone, i was un-sure where else to post this here so i thought, this is a good start.

i do not know if any of you are part of the national pain website however it would benefit many of us if we could get more people to sign the petition on the website below. just click (or copy and paste) the link and please scroll down and go to the sign the petition near the bottom of the page on the right hand side.

i'm also sending this to my entire email address book as well as you nice folks. the more the merrier. sadly enough, today is a down day for me (happy to have a laptop).

http://www.painfoundation.org/take-action/conquering-pain-together/

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Good Idea Irma, think you should do all the hard stuff for a while yet
Maggie

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So sorry to hear you are in a bad place today, just take it easy will you and let yourself have some down time, we all need it time to time

Cheers

maggie

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When was the Mexican surgery?

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Linda Miller (IMNRN) of this group wrote me, " I can't imagine that Dr. Feigenbaum charged the outrageous amount you are saying. His charge for my surgery was $5000, and my insurance did indeed pay it. "
I don't understand the discrepancy???

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Irma -

Just at closing time at the post office yesterday, I sent Dr. F the past 23 years of my life attempting to live with Tarlov cysts to get his opinion. Then I read your post and I'm back from scared to terrified. He may respond that he cannot help me, or he may say he can do the surgery. A YEAR OF POST OP PAIN??? Where is the light at the end of the tunnel? Especially for your daughter??? Hope to hear from you.

Feesing

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Maggie -

I didn't know if you have visited www.tarlovcystfoundation.org or not. But I got this doctor name from their "Find a Doctor" page:

Australia

Sheridan, Mark (Neurosurgeon)
St. George Hospital
Goulbourn Street, Liverpool
Sydney, Australia
Phone: 02-9601-6100
02-9598-5555

Hope it helps,
Feesing

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Dear Tarlov2,
I haven't heard of a surgery that cheap in about 40 years. Now, I was stretching when I said Dr, F charged 100,000. but I looked the bill up and it was 82,000. It doesn't matter anyway. Ins. will do their thing and what is left I guess she will spend the rest of her life paying off. Irma

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