Brain Tumor Removal

[spiral813]

My husband was diagnosed in 2006 with a brain tumor.  He was followed until 2008 when he neurosurgeon didn't take the health insurance we had.  The neurosurgeon told him to come back when he changed his insurance.  In 2009 my husband lost his job and also his health insurance.  He has worked very little since then.  For the past 6 months or more I've noticed a difference in my husband.  He has become very forgetful and has had problems remembering things.  This past Sunday afternoon he had a seizure and fell face forward on our floor.  I called 911 and the paramedics took him to the hospital in our town.  They did a CT of his brain and said he had a large tumor and he needed more care than they could provided for him.  So he was sent by ambulance to an adjoining town to a large trauma hospital.  He was sent to ICU where he stayed from Sunday night until Tuesday (Christmas night).  I took the old films of his previous scans with me to the hospital.  The second hospital did more testing and determined that the tumor was 5 times the size it was in 2006.  He is now on dilantin.  The neurosurgeon that is treating him this time is not the same one as from 2006.  This doctor told us the tumor needs to come out.  Since we do not have health insurance, the social worker at the hospital is trying to get us some assistance.  My husband was discharged today.  The neurosurgeon told him yesterday that the surgery would be done as an out patient surgery.  My question, is this common to do surgery on the brain as out patient surgery?

[rumpled]

Wow. Sad story that the admitting doctor was a dud - and glad you found a good one that finally helped.

Yeah, sadly there are types that are repeaters... sorry your hubs has one. I suggest that you fight to get the best radiation possible. Different types have different long term effects (possible). Gamma seems easy at first since it is one visit and it is pushed since it is older and cheaper - but sadly, it is a larger dose all at once so... most that I know can have more long term effects. Cyber knife takes longer to get but it is a tad bit more accurate and seems to have less longer term effects for those that have it. The newest type is proton beam and it is most sparring of healthy tissue (the beam does effect, on the others, whatever it passes thru, so think about that).

So please do research and I hope your husband continues to improve.

[spiral813]

I just wanted to update everyone.  Hubby awoke on January 6 with a severe headache.  He had it all day long and the pain meds he was taking wasn't touching the pain.  That evening hubby's sister and I took him back to the emergency room.  The ER doctor was shocked to find out that hubby had been in the hospital for four days and nothing was done to him.  He called the admitting doctor who felt the same way.  They admitted him back into the ICU.  I asked the admitting doctor if we had to use the same neurosurgeon as the first time.  He said it was my call.  I told him no.  He said "good call.  I will find you a good neurosurgeon."  He did indeed find us a good neurosurgeon.  He had surgery on Wednesday, January 9th.  He stayed in the ICU until Friday, January 12.  He was discharged on Saturday, January 13.  He went back to see the neurosurgeon last Thursday to have the 36 staples removed.  He is doing very well.  He is still on dilantin and he still can't drive.  We go to see the neurologist on January 30th and hopefully find out if he can stop the dilantin and when he can drive.  What a difference a good neurosurgeon makes.  The tumor was a cystic meningioma. It was the size of a lemon and non-malignant.  The doctor says he has a 85% chance it will return.  Should it return he will have to have radiation.  He will have to be followed every 6 months with a MRI.

[rumpled]

It does help to get a lawyer - I used one. You have a better chance, I think, at a first approval. The paperwork is complex and I found it overwhelming - here you are sick and the stuff is nuts. It is a lot of work and there is constant follow up (as there should be!) so you have to make sure you stay on top of it.

Yeah there is a 3 year wait for medicaire but the medicaid should hit immediately. Some states can have longer times for decisions - some take shorter times. It all depends on the number of applicants and as well the strength of your application.

[spiral813]

We started the process of social security disability the first part of December.  I have all his medical records except from the hospital visit recently.  I have all the old films with reports from 2006 to 2008.  I took them with me to the hospital so they could compare them.  I have left messages with the hospital social worker and sent her an email Friday but haven't heard back from her.  I'm thinking about hiring a social security disability lawyer to see if she can speed the process of him getting social security disability.  We were told it would take six months when we applied.  The case worker at the hospital told us that every paper she received would be forwarded to the social security disability office.  She also told us that if he gets social security disability he would automatically get medicaid. That will help but we need the help now.

[rumpled]

Yeah that is a big one and worriesome. You may also want to see if the expert here will consult on it by reading the films and see if he knows anyone who can take the case.

TBH has good points - records help. I would also contact cancer hospitals as they may have programs to help you.

[tiredbuthappy]

whoa. that's crazy. if the mass is really that big (not unheard of to have one the size of a fist but that's BIG).

You are in a tough position. Sounds like you will have to take what you can get, if you can get something. Absolutely disgraceful if you ask me. But hopefully there's someone who can help you. Reach out to the hospital social workers. Maybe a local cancer support group or association that can give you guidance? I kinda making guesses here. Definitely sounds like this needs to be taken care of ASAP. In the mean time, you have to get as much information as you can. You need to be prepared to present your husband's medical facts as soon as you do get an appointment. Go back and get copies of every scan that he has had. If you call the facility you should be able to get a CD of the scans and the radiologist's report. this will give you details on the mass. Be sure to get your husband's full medical records from the NS he saw in 2006. Also try to get any records from this most recent episode.
Due to the rapid progression, you should be armed with all of this information. It will also empower you and give you something to do while you wait to see if he qualifies. Any mention of the type of tumor? I'm assuming they thought it to be benign, at least in the initial findings, if they allowed it to be watched.

[spiral813]

Hubby's diagnosis on his discharge papers shows it as a brain mass.  He said they told him it was the size of a hand.  Don't know if this is accurate since he is having memory issues.  It is located on the left front side of his head.  I called the neurosurgeon's office for a follow-up appointment today to find out they don't see patients that don't have insurance.  I also found out today that he didn't qualify for the county health care plan.  We have too many assets.  You are not allowed more than $6000 for two or more people in family.  So at this point I don't know how, when or where the surgery will be done.  We are still waiting to see if he qualifies for medicaid disability.

[tiredbuthappy]

do you know the location and size of the tumor? I have heard of same day brain surgery, but it is not common. If the tumor is large enough to cause problems and seizures, I wonder if it is feasible in his case. If the removal is via endoscopy, then maybe. If it is a craniotomy, then I don't see it as realistic.
If they are suggesting radiosurgery like cyberknife or gammaknife, then it is possible.

[rumpled]

I am sorry that your husband was forced to wait so long for treatment.

There were options like the National Institute of Health - they have clinical trials (that give surgery and follow up) and angel flights and some university and cancer hospitals have charity programs set up for those that need critical treatment. There wasn't any surgeon that took your insurance? You could have also battled insurance for an expert if none were available and they would pay.

As for the out-patient, if the tumor is being removed using an endoscope, then yes, they often let the patient out fairly quickly. The surgeon has a good field of view to see what is removed and the incisions are small, reducing complications.

He will still have a recovery period, but he should be at home instead.