Traveling for ADR to another state

[kennethhoff]

I have had back pain (L5-S1 disk herniation) for 13 years. Like many, I have tried just about everything. So far, I have had a few good stretches, but my life is more about managing pain than anything else.

I have tried to put off any surgery until the every end, which is pretty close now.
Deciding on having ADR surgery, who, where, etc... has been very difficult. I live in NC and am not happy with the experience levels of ADR surgeons here. I am thinking about traveling to the Texas Back Institute to see a Dr Blumenthal.

I was wondering if anyone would care to post on their experiences with having their ADR and having to travel to another state. Advise, recommendations, things to for (and look out for), costs, etc .....

I wish there was someone close who I really trusted, but I get a feeling I am only going to get one chance at getting it done well/right. I have considered other centers/doctors up north, but I hear TBI is excellent as is Dr Blumenthal (and Dr Zeegers).

Any advice is appreciated. Thanks!

Ken

BTW - I have many MRI's all confirming L5-S1 (other disks are Ok), tried about every medication ever made, physical therapy, and so many therapies and alternative therapies it's hard too count. I am on SSDI (since 2004), a 49 yr old male, and whose real love is volunteering with our community health center.

[Harrison]

Ken, thx for finding us and posting (and for your kind post about the DVD too). Can you tell us a bit more about your L5-S1 disc? Is it unhealthy in terms of disc height; is it darkened and desiccated on the MRI studies? Have you had various MRI studies since 2004, and read the reports that track the rate of degenerative changes?

Generally, people whose conditions are limited to one affected level do well with their recoveries (like me), but there are always exceptions. One question and concern I have for you is the risk of waiting; e.g., the affected area:

- it could do nothing;
- it could continue to degenerate;
- it could continue to degenerate and autofuse in acceptable manner (in terms of biomechanics) and allow you to function;
- it could continue to degenerate and autofuse in unacceptable manner.

So, perhaps these are questions you've already discussed with your doctor? Whatever the case, disc replacement or fusion may be a good choice if you are indicated for either. Of course, my bias is motion preservation with the proper qualification.

[sahuaro]

Hi Ken:
I traveled from Tucson to LA for cervical ADR and hope my thoughts will be helpful. TBI may have arrangements with a nearby hotel for reduced rates.
Some hotels will offer a reduced rate if you are there for medical purposes.
The IRS allows some deductions for the person who accompanies you--I don't remember all the requirements.
We stayed in a suite at the Residence Inn because it included a kitchenette and a separate room for my husband to sleep and hang out. We were in LA about ten days--but you may need to stay longer for lumbar surgery.
We have been back to LA twice for follow-up and I do not have to return unless there is a problem. All pre-op labs were done at home as were some follow-up X-rays, and all went smoothly.

I did not have any problems during the flight home--but again, mine was cervical. I hope someone who has had lumbar surgery will chime in with suggestions about that.

I note that you are in North Carolina and wonder if you have considered some places that might be closer than TBI: NYC, Yale?

Again, I hope these thoughts are helpful. If you have more specific questions or concerns, fire away!

[annapurna]

One correction, the IRS only permits you to deduct the cost of medical professionals that help you. We've checked a few times and family member traveling expenses don't count unless they are professionals.

Biggest suggestion about traveling for surgery: plan to travel very light on your return. Use used books that you can leave behind. Buy a few sets of cheap clothes from Goodwill or similar and leave them. Ship stuff home that you wouldn't need to get home. Whatever you need to make hauling stuff around when you return easier. Even if you have a family member hauling your stuff around, reducing their load makes it easier for them to pay attention to you on the return trip and makes it more likely you will not feel strained on your return.

[2cool4U]

We drove 180 miles for my L5-S1 ADR. The ride home 4 days later was terrible. I felt every bump on a poorly maintained state highway. My wife stayed in a hotel next door but spent most of her time sitting with me. I insisted that she get out of the room for a while just to get some rest several times. I made sure she did not feel the need to stay overnight with me. It can be taxing on those with us, too, to be away from home helping manage a sick family member.

Otherwise, once home things were as with other patient recovery stories on here as far as the ADR portion of my health has gone.

Hope others chime in, I know many here have traveled up to thousands of miles for surgery.

-tc-

[laid up doc]

there's a guy at hopkins who does ADR - i saw him a couple of wks ago and am not wanting surgery yet - his name is Dr Kebaish, highly recommended by ppl on the east coast...

[wally]

Originally Posted by laid up doc

there's a guy at hopkins who does ADR - i saw him a couple of wks ago and am not wanting surgery yet - his name is Dr Kebaish, highly recommended by ppl on the east coast...

I'm in DC and have been desperately looking for someone familiar with ADR. Can you post any more details or contact info for him?

[laid up doc]

No problem...

Khaled Kebaish 410.955.3376

highly recommended by a friend (he fused her mother at multiple levels) and by my pain dr here in DC. i didn't go into the nuts and bolts too much b/c i'm trying a new RF procedure before considering surgery. i just wanted an opinion - he said i would have to have a anterior fusion vs ADR depending on result of facet block. i have a hard time believing my facets are too bad for ADR - i'm 32 with 1 level disc disease!

[Kirk]

Originally Posted by wally

I'm in DC and have been desperately looking for someone familiar with ADR. Can you post any more details or contact info for him?

Dr. McAfee in Baltimore is highly regarded as well.

[kennethhoff]

Harrison -

Thank you for replying, and also to my prv. message. Let me update:

The original injury to my back was 1997. After having a nucleoplasty in 2003 (after years of everything else), a very difficult recovery, and other personal and family issues, I decided to live with the pain and manage to do the best I could. This January I re-herniated the disc. I have been incapacitated about 4 times since then for about a week each, had a new MRI done, and am re-thinking ADR.
I found what appears to a very good place and doctor here in NC: Triangle Orthopedics and Dr David Musante. He got his medical degree from UVA, is both a neuro and orthopediac surgeon, did his fellowship at the Texas Back Institute and trained under Dr. Guyer and Dr. Blumental.

I met with him for my first meeting last week. He discussed the MRI and options. The MRI shows all disks, levels, etc ... fine except L5-S1 where the disc is dark, herniated, dessicated, and more degenerated. He recommended an ADR in a new clinical trial where a person would either get a Freedom ADR or a ProDisc ADR. The other choice is a fusion.
This would take place at the NC Hospital for Special Surgery.

I have Humana insurance and they do not cover ADR's. Dr Musante also said like you, the disc is showing the very beginning signs of auto-fusion on one side. He said I meet all the criteria for a ADR, but he needs to check to see if I meet the 3mm height criteria. He believes so, but will check this week with me.

So if I meet the criteria, I can do the clinical trial ADR and have most costs covered by the trial, have a fusion with most costs covered by Humana, or wait and let it auto-fuse. As I said I am 49n years old, relatively in good health, thin, don't smoke/drink, little exercise, and on pain meds (oxycodone 7.5mg 4-5/x per day).

My fear is if I don't do anything, it can take time to auto-fuse, maybe another 10 years who knows. To me that adds up to continued pain. But I have a feeling any more time of letting it go will eliminate any chances of a ADR, maybe even a fusion at worst.

I called TBI and believe it or not, Dr. Guyer himself called me back and gave a very good recommendation about Dr Musante. Dr Musante himself seemed well trained, intelligent, answers any questions, and told me he had performed about 100 ADR's. I never asked how many Freedom vs ProDisc ADR's he did, which I will. He also explained that at L5-S1, even fusion is a good choice because there is little movement at that level, and all my other levels are fine. He saw no problems with my facets, and I remember even prior facet blocks years ago elsewhere did no good.

So I am meeting Dr Musante this week to see if I am a candidate for the ADR, and then I have to decide. The hardest part is recovery I think. I want to be off pain meds, not worry every time I walk if I can make it or will my disc give out, etc .... on the other hand, will a ADR leave me in worse condition. It's a tough choice, but times a ticking.

Anyway, anyone's thoughts are appreciated

Peace,
Ken

Originally Posted by Harrison

Ken, thx for finding us and posting (and for your kind post about the DVD too). Can you tell us a bit more about your L5-S1 disc? Is it unhealthy in terms of disc height; is it darkened and desiccated on the MRI studies? Have you had various MRI studies since 2004, and read the reports that track the rate of degenerative changes?

Generally, people whose conditions are limited to one affected level do well with their recoveries (like me), but there are always exceptions. One question and concern I have for you is the risk of waiting; e.g., the affected area:

- it could do nothing;
- it could continue to degenerate;
- it could continue to degenerate and autofuse in acceptable manner (in terms of biomechanics) and allow you to function;
- it could continue to degenerate and autofuse in unacceptable manner.

So, perhaps these are questions you've already discussed with your doctor? Whatever the case, disc replacement or fusion may be a good choice if you are indicated for either. Of course, my bias is motion preservation with the proper qualification.