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Need Input......AGAIN!!!!!!
Hi , I am back again. I now have a lap top so I don't have to spend any time at the desk top....was very painful to try.

Ok, so here goes. In Montana and injured in 2007 at work. Initial injury stated as herniated at L5-S1 and slight bulging at L4-L5. Had microdiscectomy in 2008. Placed at MMI in June of that year and in July taken off again due to further pain. Found to have symtomatic Tarlovs in spinal area and sacral area. Now accepted as injury related.

So here is the problem. I did manage to find a surgeon who specializes in this area. There are only a few in this country and only one who is very experienced. He has been consulting with my surgeon here and call me the other day to say that if I don't have surgery to remove the Tarlovs I am looking at permanent disability and a life of eating pain killers. But his hospital is in Kansas City. They think they can get w/c to pay for the surgery and the hospital, but think that they won't pay for the traveling expenses or the hotel. I need an escort as well. I need to be in Kansas City two days before the surgery for tests and consultations, Four days in hospital and a further week at a hotel until I have final consultation before going home. All of this is likely to cost about $1500. I am waiting for a call from my attorney to see if there is any way to get this paid for as well. The surgeon said that the surgery has a %70 success. My own surgeon here won't touch the surgery since he feels that it is a nightmare scenario. I don't blame him. But I really want the surgery so that I can go back to some sort of normal life. At the moment I spend most of my days in a fog of muscle relaxants. I can't drive anymore because of this. I am totally isolated in most ways. Any ideas or has anyone here had surgery outside of their own state?
I know two people who traveled out of state to see the best available surgeon and WC paid for the medical care but not the ancillary stuff , no more no less than had it been done locally.

Having said that, have you found a Dr. willing to state that a Tarlov's cyst is work related ?
If you are speaking of KU Medical Center, I believe that have a hospital van to assist with transportation needs.

This would be of great help if you are out patient.

I would go to their web site.
No, it is Midwest Neurological. Shame. I do have three surgeons now who state that the Tarlovs are workplace injury related. One of them the independent review doctor that w/c sent my records to in order to get a statement that they are genetic....that one back fired on the w/c.

I can not see how I can possibly afford the flights and the hotel. I am hoping that because this injury is fairly new to the medical field...i.e. the research has been fairly new, and that this is a surgery not done in most states as yet. Kansas City is about the best you can get for this. There is another surgeon in California and I have someone searching on his credentials. I don't know exactly where he is, but my sister lives down there and it would be possible to stay with her if this surgeon is fairly close. Other surgeons who know of the nature of the beast try to drain the cysts and fill them with a glue type substance....which is not ideal since it is just filling the cyst with something else. Draining them does nothing since they just fill up again. The problem is that each cyst is actually a bundle of nerves as well and messing with those has their own set of problems.

As far as driving goes. That would pose other problems. I can't sit in a car for more than half and hour. And following surgery the bouncing would be horrific to deal with.
Kansas City is known for it's excellent medical care facilities.

I was sent to Kansas CIty for treatment of the skin cancer and of the knee.

Your attorney should be working on getting you accomodations and travel expense.

I would google the medical facility and see if they provide transportation.

Some of the non-profits may provide lodging in Kansas CIty.
Thankyou. What do you mean by non profits? Like the Y or something like that? The problem with that is that I still need someone to stay with me and go out for food etc. I know that after my last surgery I was completely out of it for two weeks...and this one is a lot more complicated and a longer surgery as well. And there are big chances that I will need to self catheterize too, at least for a while until those effects go away. Not looking forward to that one.

I called my attorney twice and only got a call back on friday late afternoon....and I was out. So I will try again on Monday and see what he has to say. I hope that he can do something.
I see your problem.

Your attorney needs to work on this.

I would think a rehab hospital might be a place you could go after surgery.

Some of the non-profits provide housing but not the care you will need,
The Others above have Given You Great Advice, and I Wish You the Very Best! When My Father had His Heart By-Pass in Pittsburgh, even though We Only Live 30 Miles away, My Mom would not Leave Pitts. until Dad Came Home. The Hospital had Small Apartment Type Rooms for Members of Families that had a Loved One in for an Extended Period, and I Believe it was Only about $20.00 per Night. You May want to Check on that, Maybe a Friend or Family Member can go with You, and You can Stay at the Apartment until You are Allowed to Leave. You also May want to Check with United Way, the Salvation Army, or a Church of Your Denomination for Housing Accommodations while There. As far as Air-Fare and Such, Hopefully Your Attorney can get You Approved via w/c for both Housing and Flight, if not try and Call Places such as Orbit or Southwest and let Them know Your Situation, They May give You a Reduced Fare, and I Remember Somewhere there is a Group of Private Pilots that will Fly People for Life Saving and Serious Surgeries for Free! So if You Feel this Surgery is for You, there should be a Way, with a Bit of Searching on Your Part to Get You There!! Hopefully Your Attorney can Save You All of the Trouble, and get the Ins. Co. to Approve it All!! My Very Best to You!!Wink
You may wish to contact Volunteers of America, it is highly possible, that they will help fund this for you. They may also help in setting it all up with you.


And you can also try looking into the others:


Even better, you should try and make contact with Anne Louise Oaklander, M.D., Ph.D:

The National Organization for Rare Disorders’ Medical Advisory Committee has announced that Anne Louise Oaklander, M.D., Ph.D will receive the Tarlov Cyst Disease Foundation’s grant for Tarlov cyst research.

Dr. Oaklander is an attending physician in Neurology and Neuropathology at the Massachusetts General Hospital and Associate Professor of Neurology at Harvard Medical School. She directs the Nerve Injury Unit, which she founded in 2002 at Massachusetts General Hospital, following her fellowships at Johns Hopkins. Dr. Oaklander works in the emerging field of nerve injury and neuropathic pain and is internationally recognized for her research, as profiled in Science and New Yorker magazines as well as in print and broadcast news media.

We are excited about Dr. Oaklander's research with the Foundation's grant and hope that her project will put us one step closer to improved diagnosis and treatment outcomes for Tarlov Cyst Disease. Dr. Oaklander’s publications should help educate the medical community and public alike about the diagnosis and treatment of Tarlov cysts.
Reply's are intended solely for informational purposes. They are based on personal opinions, experience, or research and are "not to be taken as fact or legal advice", otherwise, always consult an attorney or a doctor.
Cycler Wrote:I know two people who traveled out of state to see the best available surgeon and WC paid for the medical care but not the ancillary stuff , no more no less than had it been done locally.

Having said that, have you found a Dr. willing to state that a Tarlov's cyst is work related ?

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