Post-Op Care, if you went out of town for surgery

[LizAN]

If I go to House to have my surgery, what will my options be if I need post-op care, say for a CSF leak, or I need a gold weight or a nerve graft?  I won't have an established relationship with a local or semi-local neuro-tologist or neurologist.  (I have seen the ones in Austin but did not feel confident in them, since my ENT had referred me to House.)

Dr. Slattery doesn't think it's likely I would need to deal with these things at all, but he did say a CSF leak would probably not necessitate a trip back to LA.  I don't have a clue who I would go see here in Austin for a CSF leak, and I don't know how the surgeons in Houston or Dallas would feel about taking me on, when I was not one of their surgical patients.

Are CSF leaks common enough that a local neurosurgeon could be trusted to deal with it?  What if it's not at the incision sight, but the fluid is leaking out of my nose?  Does that necessitate going back in through the ear canal (I'm having translab)?

Anybody dealt with this?

Liz

[LakeErie]

I am no expert on CSF leaks, but did have one from the nose that resolved on its own. If leaks do not resolve on their own, other conservative options are employed. A spinal tap can relieve the ICP -IntraCranial Pressure - and reduce the flow from the leak allowing time for the leak to heal. If that doesn't work, a lumbar drain is placed while hospitalized the reduce ICP for 5 to 7 days affording longer term chance to heal. If the leak is at the incision, pressure bandaging is applied before any spinal taps If these options fail, reoperation is a possibility.
Conservative measures usually work.
One thing to remember, after tumor removal, the tumor bed is heavily irrigated. That water can lead to "fluid" drips from the nose for a couple days following surgery. So don't immediately assume you have a CSF leak if your nose drips a little.
Again, the more experienced your surgeon is, the less likely the chance for CSF leaks. IF there is a leak, they often can resolve on their own, or respond to conservative measures. My assumption is that post-op care for a leak can be arranged anywhere and you would not be required to return to LA. Also, the leak would probably be apparent before you left House. Good luck

[lrobie]

Liz,

I have an appointment scheduled with my PCP to discuss my surgery with her and to ask her who she would suggest I see if there is a problem once I return.  I believe I was told by House that they have a list of doctors who they work with throughout the U.S. that they might recommend you contact if there is a major problem.  My husband has this same concern.

Lisa

[LizAN]

I believe I was told by House that they have a list of doctors who they work with throughout the U.S. that they might recommend you contact if there is a major problem.

Thanks, Lisa.

I wondered whether they had a local referral list.  Hopefully, I won't need it.

Liz

[JAndrews]

CSF leaks are not that common with House Ear. Stick to the post-op plan. They are excellent.

[nftwoed]

Hi;

  If HEI uses the abdominal fat graft to seal the skull burr hole, I wouldn't anticipate a CSF.
  Seems a qualified neurosurgeon anywhere, wouldn't have trouble dealing with a CSF if one should occur.

[lrobie]

I talked to Dr. Friedman today and he said if a major complication occurs once you've returned home, they have a list of colleagues throughout the U.S. that they can refer you to.  He said this rarely happens though.

Lisa

[LizAN]

I am no expert on CSF leaks, but did have one from the nose that resolved on its own. If leaks do not resolve on their own, other conservative options are employed. A spinal tap can relieve the ICP -IntraCranial Pressure - and reduce the flow from the leak allowing time for the leak to heal. If that doesn't work, a lumbar drain is placed while hospitalized the reduce ICP for 5 to 7 days affording longer term chance to heal. If the leak is at the incision, pressure bandaging is applied before any spinal taps If these options fail, reoperation is a possibility.
Conservative measures usually work.
One thing to remember, after tumor removal, the tumor bed is heavily irrigated. That water can lead to "fluid" drips from the nose for a couple days following surgery. So don't immediately assume you have a CSF leak if your nose drips a little.
Again, the more experienced your surgeon is, the less likely the chance for CSF leaks. IF there is a leak, they often can resolve on their own, or respond to conservative measures. My assumption is that post-op care for a leak can be arranged anywhere and you would not be required to return to LA. Also, the leak would probably be apparent before you left House. Good luck

Thanks, LakeErie,

How does the fluid get from your skull base to your nose?  Would that mean there is a leak in the dura?  Where is the dura breached in the translab procedure?

-Liz

[LakeErie]

 LizAN:
du·ra ma·ter  audio  (dr mtr, mä-, dyr) KEY

NOUN:

    The tough fibrous membrane covering the brain and the spinal cord and lining the inner surface of the skull. It is the outermost of the three meninges that surround the brain and spinal cord.
- American Heritage Dictionary

The dictionary definition indicates that breaching the skull to reach the tumor would breach the dura. The CP angle itself contains C-S fluid.

In my case, retrosigmoid approach, after the craniectomy the dura was incised, then retracted, and the tumor subtotally removed. After removal the incised dura was reapproximated ( repositioned.) Unlike most neurosurgeons, my doctor does not use sutures on the dura, he wants no perforations at all. Therefore the dura may leak until the incised parts, which are initially uneven with each other, settle into place.  My CSF leak did resolve as he predicted.
It is my understanding  that the fluid that leaks from the dura finds its way to the hollow air cells in the skull to the sinuses or the eustachian tube, and from there to the nose. You may want to research this aspect yourself as it is just my understanding. Hope this helps and good luck.
PS - With skilled surgeons the leaks are more and more rare.

[ppearl214]

Hi;

  If HEI uses the abdominal fat graft to seal the skull burr hole, I wouldn't anticipate a CSF.
  Seems a qualified neurosurgeon anywhere, wouldn't have trouble dealing with a CSF if one should occur.

Unfortunately, the part I highlighted in red/bold above is a difficult statement.  As we know, each treatment option is unique onto itself and regardless of who/which facility does the surgery, there is no guarantee that one facility using ab fat graft for the burr hole is minimal compared to another treating facility, although the rest of the statement is correct.

CSF leaks can be more common than noted as many surgical (and radiation, as well!) patients have endured them over the years that I have witnessed here on the forums (been here for 7 years). For those that report, patients have recognized the issue right away (nose drips, salty taste, etc) and the treatment teams have been able to handle right away.  It's understanding what to look for and report it to the treatment team right away.

That is the tough part of deciding to go out of town for a procedure.  You want to be able to go back to your treating team to have them evaluate any post-treatment potential issues... and yet, if they are a distance, even though there may be someone local that they communicate, the surgeons are the ones that know you "intimately" by doing the "hands on" treatment (ie: could see what was going on inside).  Very difficult decision as to travel or not.  You will know in your gut what team is best for your own, unique situation.... and listen to your gut... it will guide you.

Sorry, had caffeine this am.
Phyl

[james e]

I live in Georgetown, thought about House, and the follow up distance was a problem, so I had my surgery in Houston at Methodist Hospital right next to Rice University. Dr Vrabec was my doctor and I recommend you have an interview with him prior to going to House. I had a few follow ups and Houston is a lot closer than LA.

James

[CHD63]

Just have to balance this out here.  I had all of the same questions before flying across country to LA for treatment.  I was assured that post-op complications were quite unusual, but if they did occur, the vast majority of them occurred within the first week post-op.  That is why HEI recommends you not plan your return flight/travel home for at least 10 days post-op.

Thankfully I had no complications, but Dr. Friedman also assured me that they would put me in touch with someone nearby who would handle any late developing problems.  Actually I am being seen on a regular basis by a neuro-otolaryngologist (three hours drive from my home) who is happy to follow me.  In fact I had an appointment yesterday ..... mainly to monitor the Ponto abutment site (he said it looked "beautiful"  ) and to evaluate any symptomatic reason to order another MRI (had a clear one in November).

I still feel the remote possibility of post-op complications is not a reason to choose a nearby treatment center.

Just my two cents.  Clarice

[LizAN]

I live in Georgetown, thought about House, and the follow up distance was a problem, so I had my surgery in Houston at Methodist Hospital right next to Rice University. Dr Vrabec was my doctor and I recommend you have an interview with him prior to going to House. I had a few follow ups and Houston is a lot closer than LA.

James

Hi, James,

How many follow-up appointments did you have with Dr. Vrabec?  How long did you stay in Houston after your surgery and how many times did you have to go back?

Liz

[LizAN]

I appreciate everyone's comments on this issue.  It's a tough decision, as you all know.

Twenty months ago, I went back to work, after having been disabled for several years.  For a year and a half, I spent what extra money I earned on alternative health care, trying to maximize my strength so that I could keep a job.  In January, through no fault of my own, I got laid off. I was fortunate to land a new job within a couple of months, but we have no savings. Given that I'm going to be unemployed again for at least a couple of months (assuming they don't actually fire me tomorrow, when I tell my brand new employer that I have to take a couple of months off), we have to watch every penny we spend.

You would think it would be easier for me to travel to Houston, but our cars are not particularly road-worthy.  We would probably have to rent a car each time we drove down there.  I realized yesterday that by taking a day off work (I'm hourly) and renting a car to go down there to see Vrabec a couple of times for preliminary appointments, I'd be spending the money that could be put toward the airfare to LA.  I'm sure Dr. Vrabec is great, but I have to drive to Houston just to talk to him.  The office won't answer any of my questions until I see the doctor, whereas  I can call Dr. Slattery to set up a free phone call any time that I need to ask questions.  If I actually lived in Houston, it would be a no-brainer to go see Dr. Vrabec, but he is three hours from here, not just a drive across town.  Without a road-worthy car, and having to take time off to get there and back, it becomes an expensive trip.

My biggest concern is having the fewest complications and recovering absolutely as quickly as I can get back on my feet.  I have to go back to work ASAP or we are in deep DO-DO.  This is a pre-existing condition and my disability insurance won't cover it.  I have to have the absolute best in medical care.  Vrabec may actually be the best, but I don't feel like I can risk the money for the trip, just to find out how I feel about him.

<Very Big Sigh>

Liz

[pjb]

I appreciate everyone's comments on this issue.  It's a tough decision, as you all know.

Twenty months ago, I went back to work, after having been disabled for several years.  For a year and a half, I spent what extra money I earned on alternative health care, trying to maximize my strength so that I could keep a job.  In January, through no fault of my own, I got laid off. I was fortunate to land a new job within a couple of months, but we have no savings. Given that I'm going to be unemployed again for at least a couple of months (assuming they don't actually fire me tomorrow, when I tell my brand new employer that I have to take a couple of months off), we have to watch every penny we spend.

You would think it would be easier for me to travel to Houston, but our cars are not particularly road-worthy.  We would probably have to rent a car each time we drove down there.  I realized yesterday that by taking a day off work (I'm hourly) and renting a car to go down there to see Vrabec a couple of times for preliminary appointments, I'd be spending the money that could be put toward the airfare to LA.  I'm sure Dr. Vrabec is great, but I have to drive to Houston just to talk to him.  The office won't answer any of my questions until I see the doctor, whereas  I can call Dr. Slattery to set up a free phone call any time that I need to ask questions.  If I actually lived in Houston, it would be a no-brainer to go see Dr. Vrabec, but he is three hours from here, not just a drive across town.  Without a road-worthy car, and having to take time off to get there and back, it becomes an expensive trip.

My biggest concern is having the fewest complications and recovering absolutely as quickly as I can get back on my feet.  I have to go back to work ASAP or we are in deep DO-DO.  This is a pre-existing condition and my disability insurance won't cover it.  I have to have the absolute best in medical care.  Vrabec may actually be the best, but I don't feel like I can risk the money for the trip, just to find out how I feel about him.

<Very Big Sigh>

Liz

I have to admit I am partial to HEI....their expertise and the great outcomes speak for itself.

Best Wishes,