update on boy am I new at this

[Karla83401]

I picked up a copy of the MRI report that listed the tumor as "moderately large" with measurements of 1.4x1.1x1.1cm in one area and 8x6x4mm in the smaller area. I took the report and films to the neurosurgeon. He said that the tumor was not as large as they stated that it was more along the line of a medium size tumor but he felt that it should be removed. He said that he does not do this type of surgery very often (we are in a very rural area) and recommended that I go to a place called The House in California to have it removed. Does anyone know anything about this place? We did discuss using the gamma-knife but since my COBRA insurance ends in about 16 months and a tumor could negatively impact my ability to get a different insurance so surgery seems like my best choice because it is growing so rapidly. So now I am open to any suggestions or ideas.

Thanks for your time,

Karla

[Joef]

haha .. thats not a large tumor .. and you Dr. is telling you the right thing!! .. "House" in LA is the top AN place the world !!
(at least for surgery) ... its where I had mine done! there are lots of messages about house here .. do a search...

[Battyp]

You def. want to go somewhere who sees these things more than a few times in their career.  Where do yo live?

[Karla83401]

Hello again,

I live in Idaho Falls, Idaho which has a population of about 60,000 in the town and close to same in the surrounding county (I think). I will do a search for the House on this website. Does anyone know how the figures reflected on the MRI report convert to mass? Is there a formula? Thanks again for all the help and support. Karla

[Battyp]

Karla from what I've read on here you can send your reports to the house for a phone consult.  I know moffitt in tampa offered the same courtesy but I didn't have time to wait on things.  I wish I had time to send my films to house to get their opinion I think it would have been interesting. 

[ppearl214]

Hi Karla and welcome!  We dont' bite unless required!

I can share with you that I used House Clinic as a microsurgery 2nd opinion. I sent my MRI (on CD format) to House. Dr. Brackmann has followed up with me on phone and email with his thoughts about my situation.  There are many here that have had surgery there at House Clinic and if you read amongst the board here, you will find many that share their thoughts and experiences with House Clinic.

Are you near the WA state border by chance? 

Hang in there. As noted previously, you and I have AN's that are deemed "smaller", so there are plenty of options out there for treatment. Please research carefully, ask questions and know that we are all in this together!

Again, welcome.
Phyllis

[Karla83401]

Hi Phyllis,

Thanks for the words of encouragement. I do not live really close to the Washington border but I am alot closer to it than Los Angles. My AN is smaller that I was originallly told however they are very concerned because of the amount of growth that occurred over 2 1/2 years. It went from being a tiny speck that they thought was just a cord abdormality to its current size. They said that this is quite rapid growth and that it should have only grown about 1.5mm per year. Also the onset of any symptoms was so sudden. Besides the growth rate of the tumor I am also looking at the fact that I will be taken off of my late husband's health insurance COBRA in about 17 months. The other agents that I have talked to say the tumor would be considered pre-existing and therefore would not be covered under any new plans. That scares me because I have three children from ages 2 to 16 still depending on me.

Anyways the doctors here are going to work with the doctors at the House and see if we can get me in by the end of May. That way I can finish this semester and not loss that time in school.

Once again thanks to everyone for writing....it helps so much to talk to other people about this. Needless to say all six of my children are freaking out as are the rest of the family. It seems that I am the only one who is remaining calm. I am sure they are freaking because my husband died of a very rare heart disease in a matter of 2 weeks after he got sick. Anyways I feel that I will come thru this fine, I just want to make the best decisions that will have the least negative impact on my children.

Thanks,

Karla

[ppearl214]

Hi Karla,

Glad to help. Know that we are all here for you... in a heartbeat!

Curious. I know Stanford has a great program there as well. Would that be easier traveling for you from ID/WA State line to Stanford?  I hear that they have a fabulous program out there as well. Just a thought.

Hang tough! you are not in this alone and we're all here to help look out for you and each other!

Phyl

[Battyp]

Karla,
  Pleae know I feel your pain!  My husband died froma brain tumor and I've been raising my son alone so this whole thing did an emotional number on him!  Counselling helped get him through the rough spot but I know emotionally he's still fragile. 

My biggest fear is losing my health insurance as I know I'll be uninsurable after all this. 

Do you collect social security widow benefits?  Depending on how much you get you could be eligible for medicare.  When I applied for ss disabililty last week they said on disability you get medicare after 2 years (it's the interim 2 years that has me biting my nails!) 

{{{{{{{{{{{{{{{BIG HUGS}}}}}}}}}}}}}} To you and your children.

[Karla83401]

Hi Battyprincess,

I love your name! Thank you for the words of support and understanding. It is hard enough being the remaining parent of a child/children whose other parent has passed away, and then to have to tell them that you have a something like this going on makes it even harder. I want to pick each of them up in my arms and protect them from any more hurt, yet I know that I cannot protect them from their fears about lossing me after what happened with my husband. It has shaken their faith in the medical profession so deeply. 

I do collet survivor benefits for myself and the two youngest children (but not the 2 year old because she is a grandchild) but that will decrease when my son turns 18 in a year and then will reduce again when my daughter turns 16 in the 3 years. Did you apply for disability because of the AN or was it for a different reason, if you don't mind me asking?

This health insurance stuff is what scares me to death because in addition to the tumor, they decided that the increase in white leisons on my brain are from MS. This on top of stage three asthma and reflux I think that I may be a hopeless case for further insurance.

You are lucky that your son was willing to do counseling. My 12 year old has refused counseling (I think it is because she is afraid to touch the pain) to the point that she has many of the symptoms of Post traumatic stress disorder. She even has panic attacks that show up in high blood pressure, labored breathing and rapid heartbeat. The was cause is the fact that my husband collasped at the lunch table and died suddenly right in front of the children. It is hard enough to lose a parent but to lose them when you are a child and with no warning is so horrible.

Well that should do for my therapy session tonight. Thank you for being such a good therapist to talk to. This site and all the people in it make life easier at this point.

Thanks again,

Karla

[Battyp]

Karla I'm sending you a reply to your regular email...

[matti]

Karla and BattyP - You are both amazing women and an incredible source of inspiration. Thank you!

matti

[thecakes]

  I read that your husband died, how tragic.  I am so sorry to hear this.  What did he die of? how old was he?  and how old are you? I guess I have so many questions,  I'v wondered how I could survive without my husband, he's my rock.  I know life will go on but it would be diffucult

[Karla83401]

Good Morning Cakes,

My husband died of myocarditis and doctor screw up (at least in my opinion). He got ill very suddenly and was transferred to a hospital out of state for "better" care. Three days after he arrived they decided that our local doctors had messed up and released him. I begged them to keep him, I argued with them, all to no avail. So I brought him home. Six days later we were having lunch with our two youngest children when he collapsed and died. That is why I am determined to make informed decisions when it comes to this tumor and do what I think is right.

My husband was 45 years old when he died. I am now 47 years old, we were only about 4 months apart in age. I know how you feel about the thoughts of losing your husband. Michael (my husband)  was/is my other half, he completes me. Even though he is not physically here, I feel his love and presence all the time. People think I am crazy (maybe its the tumor) but I am every bit as married to him today as I was the day he died.

I have survived his passing because of the love and support of family and angels put around me by the Lord. I have made it my goal to live my life in a way that would bring pride to my husband and to raise our children in a way that would be pleasing to him. I am even going to college full time partly because that is something that he really felt that I should do, I am also going because I want a higher paid job before I retire.

If you don't mind me asking, is it you or your husband that has the AN. I try to read most of the posts on this web site but then I can't remember everyone elses situation.

Thanks for asking about us and letting me ramble/vent about my life.

Karla

[Battyp]

Karla what are you going to school for?  (forgive me if I'm repeating myself).  Like you it's been 10 years since my husband died and we weren't together under the best of circumstances but I loved him in spite of his faults and still miss him at times.