Medical Question (Star Legend)

[BostonBoy2]

Early this year we booked. a Barcelona-Athens cruise with Windstar (Star Legend) for Sept. 2023.

 

However, in the interim my wife has been diagnosed with a meningioma - a type of brain tumor. 

 

The medical professionals at MGH say that it is small and is not growing/non-malignent. They advise "watchful waiting" before brain surgery, which carries risks.

 

However, my wife has had 2 (perhaps 3, we are uncertain about the first) seizures in the last six months. It was the second of these that led to medical evaluation and diagnosis.

 

Visits to the ER after 2 of these did not result in any "treatment" per se. She was dehydrated and was treated for that, alone.

 

She seems to recover from these seizures quickly - she is tired and a bit wiped out for 24 hours, but that's it.

 

So, I am trying to decide about this trip. We do have cancellation insurance, so the cost is not an issue. We also have evacuation insurance. However, she wants to go. And, we are are taking our daughter and her boy friend ( very serious), so cancelling would be a big disappointment.

 

The issue for me is what I would have to do if she had a seizure on the ship. She called Windstar and they told her that there is a doctor and two nurses on the boat, which is a bit reassuring. However, the idea of having to leave the boat to check into a hospital somewhere en route is frightening.

 

I'd appreciate any thoughts on this situation.

 

Thanks, in advance. 

[r&rd]

Only you can make that decision. But it sounds like you have thought this through and have your bases covered.

We traveled on the Legend twice with solo passengers having preexisting medical conditions that needed medical attention on the ship. In. In both cases the medical team were extremely helpful. They will always take the safest course of action. I would bring a letter from her doctor clearly stating the diagnosis and treatment so they are not sending you off the ship for diagnostic reasons.

When one of the people we were with clearly needed additional care the ship could not provide we were able to convince the doctor that sending her off alone to a hospital in Russia was not a good option. They allowed us to wait until Finland, informed the hospital we were coming, provided transportation to the hospital and wanted to insure that a family member would be meeting her in Finland. 
the second person needed to return home. The ship wanted to transfer him to a hospital which we knew was not needed. He signed a form refusing additional care. They escorted him to the airport and asked for the name and contact person who would be meeting him at the other end.

You are at least will be in countries where communication is possible and health care is good. You will never be far from civilization so the ship will not have to make major changes to the itinerary and need to make them quickly.

[Host Jazzbeau]

My wife was diagnosed with a meningioma 11 years ago, an 'incidental finding' before any seizures started, and the surgeons we consulted with all suggested having it removed sooner rather than later even though it was still completely self-contained.  We did, and all has been well since then.  OTOH someone we know discovered her meningioma only after seizures started and things did not go well for her.  I strongly suggest that you get a second opinion at a different hospital and consider immediate surgery.  [We rejected Memorial Sloan Kettering as uncaring and found a wonderful surgeon who is now at Lenox Hill: John Boockvar.  You might consider a quick trip to NYC to consult with him.]

[crilski]

I had an incidental finding of a meningioma tumor 3 years ago.  Even though, I was not having headaches, seizures, etc - I wanted the surgery to get it over with!  I know a lot depends on where the tumor is located.  Mine was in the area of the brain that involves language/reading/ comprehension.  I thought great - a retired teacher that can't read or write.  I had surgery in the midst of Covid.  I was in the hospital 3 days.  Some may find it hard to believe, but I had absolutely no pain.  I didn't look too cute with half my head shaved and 13 staples.  Friends that had knee replacements had more pain and recovery issues than I did.  I was told - no driving for 30 days - and had prescription for seizures.  I get an MRI once a year - and call it good.  It was scary -  but absolutely no after issues.  I have since met people that did PT or OT - post surgery - and now they are doing great!   I would have been ready to travel as soon as the staples were removed!  Hoping the best for your wife! 

[Host Jazzbeau]

49 minutes ago, crilski said:

I had an incidental finding of a meningioma tumor 3 years ago.  Even though, I was not having headaches, seizures, etc - I wanted the surgery to get it over with!  I know a lot depends on where the tumor is located.  Mine was in the area of the brain that involves language/reading/ comprehension.  I thought great - a retired teacher that can't read or write.  I had surgery in the midst of Covid.  I was in the hospital 3 days.  Some may find it hard to believe, but I had absolutely no pain.  I didn't look too cute with half my head shaved and 13 staples.  Friends that had knee replacements had more pain and recovery issues than I did.  I was told - no driving for 30 days - and had prescription for seizures.  I get an MRI once a year - and call it good.  It was scary -  but absolutely no after issues.  I have since met people that did PT or OT - post surgery - and now they are doing great!   I would have been ready to travel as soon as the staples were removed!  Hoping the best for your wife! 

You are right, there is no pain from the meningioma surgery (or the follow-up).  With modern scanning and surgical tools, the major risk is from the general anesthesia.  And the meningioma is highly unlikely to grow back (but MRIs are a good insurance).

 

After a decade the hardware securing your bone patch may start to push the skin up.  Before it breaks through, search for a neurosurgeon who is also qualified in Neuroplastic and Reconstructive Surgery to do the touch-up operation.  Right now there is only one in New York State:  Dr. Netanel Ben-Shalom at Lenox Hill Hospital in Manhattan [he just did my DW's follow-up surgery]:

https://www.northwell.edu/about/leadership/netanel-ben-shalom

 

[hamrag]

Wow, these last 3 posts are probably the most helpful I ever read on cc. You both deserve huge credit for your honesty and willingness to share personal experiences.

[6rugrats]

Speaking from some personal experience, I would cancel now and get treatment.  The cruise can be rescheduled and it will be something to look forward to.  This is an unpredictable and new thing; it’s not the same as having controlled seizures for years.  
I also would get a second opinion.  Good luck.

[DaMom]

On 8/7/2023 at 11:01 AM, Host Jazzbeau said:

My wife was diagnosed with a meningioma 11 years ago, an 'incidental finding' before any seizures started, and the surgeons we consulted with all suggested having it removed sooner rather than later even though it was still completely self-contained.  We did, and all has been well since then.  OTOH someone we know discovered her meningioma only after seizures started and things did not go well for her.  I strongly suggest that you get a second opinion at a different hospital and consider immediate surgery.  [We rejected Memorial Sloan Kettering as uncaring and found a wonderful surgeon who is now at Lenox Hill: John Boockvar.  You might consider a quick trip to NYC to consult with him.]

John Boockvar is a legend - watch the Netflix documentary series Lenox Hill, and the follow-up, Emergency NYC. I'm on the West Coast and I would fly across country to consult with this doctor. I'm so glad all has been well with your wife and hope that you've been able to continue cruising!

[MargotH24]

There may be a doctor and 2 nurses on board but there are no advanced medical facilities such as MRIs or CTs.  Windstar and their doctor might insist she leave the ship to have these if she had another episode.  Best idea would be to ask her regular doctor for advice.