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Pster
01-24-2008, 12:29 PM
Now that the forums have moved I feel like I'm telling SOO many more people about things.... don't know why - it feel like there are more people here than at the other boards.... silly I guess.

Anyway - we had the appmt with the oncologist. He didn't really tell us anything new. But I guess, as another dr giving us his opinion, he reiterated what had been said before...

Basically....they can't tell what the tumor is with any real certainty unless they do a biopsy - and they can't do a biopsy without an operation. If dh is going to go that far as to have the operation - then they might as well be removing it. The oncologist also thinks it probably is a schwannomma. (FYI: since I can't describe it....

A schwannoma is a kind of tumor (http://www.reference.com/browse/wiki/Tumor) originating from the Schwann cells (http://www.reference.com/browse/wiki/Schwann_cell). The insulating myelin sheath (http://www.reference.com/browse/wiki/Myelin_sheath) which covers peripheral nerves is produced by the Schwann cells. Hence, one kind of tumor originating from the Schwann cells is called a schwannoma. Schwannomas are very homogeneous tumors consisting only of Schwann cells. The tumor cells always stay on the outside of the nerve, but the tumor itself may either push the nerve aside and/or up against a bony structure (thereby possibly causing damage). Schwannomas are relatively slow growing. For reasons not yet understood, schwannomas are mostly benign (http://www.reference.com/browse/wiki/Benign) and less than 1% become malignant

The tumor dh has is I think at his L5 or L4 vertebrae. The sciatic pain he has had is because of the tumor pressing on the nerve, those 2 discs being blown out, and a lot of inflammation in the area.

Dh has recently started having large areas of numbness in his upper thigh - the oncologist think this recent problem could be the result of the tumor growing. He also tested dh's reflexes and found a weakness or lack of reflex in his right leg (which is new). Sooooo..... since his problem seems to be getting worse in his leg - he will prob be going to Shands for surgery. We dont' want to put this off in for fear of the nerves in his leg being furthered damaged.

All that being said... I am not sure if the dr's know yet if the tumor is, say, a ball that is "next" to the nerve and is pushing on it that way - or ...if it is part of the nerve sheath and is therefore mixed in with the nerve. If it is in the nerve sheath - that is whole new big problem because then if they have to cut it out - he may lose use of his leg. So - I don't know if they'll know what they are fully dealing with until he actually has the operation. And we won't now for sure "IF" the tumor is benign until he has the operation and remove it and can then do a biopsy.

That clear as mud? I'm going to be calling Shands today to try and set up a preliminary appmt to meet with a spinal surgeon.

I really, really appreciate everyone's advice and thoughts and prayers. It has meant a lot to me. It's been a tough road - lots of ups and downs. Right now I think there is a good chance that it is benign...but every dr has said - nothing is ever for sure. So we are cautiously optimistic! Once it's time for the operation - then I can worry about something new - "where" the tumor is located. But I'll wait and see with the surgeon has to say...

:)

Karin
01-24-2008, 12:34 PM
Praying for you, your dh and your family. I'd focus on the fact that these are usually benign, because that's promising news.

Jill, OK
01-24-2008, 12:34 PM
Thanks for the update...continuing to pray, here.

Keep your chin up!

Sharon in SC
01-24-2008, 12:38 PM
thanks for the update, Pster. I have been praying for your dh since your post over at the old boards and will continue to do so.....

8FillTheHeart
01-24-2008, 12:40 PM
I'm so sorry for what you both are going through. Would you mind sharing your dh's first name? I would like to add him to my prayer list, but Pster's dh seems too impersonal for such a serious prayer request. ((Hugs)) to you. Prayering for stength for you as well.

Pster
01-24-2008, 12:47 PM
thank you all

- dh's name is Tim.

Jodi-FL
01-24-2008, 01:08 PM
you nailed each of your girls to a tee.

I would go for the surgery. They can always decide what to do/not to do once they open him up, and see exactly where the tumor is pressing. I know this is way scary, my dh had neck surgery for something very similar 16 years ago. he was in the hospital and being in Lancaster County, they served him red beet eggs and roast beef as his first post-op meal. He was starving, of course, so he ate it all quickly and yup, you guessed it, it all came up within 15 minutes.

So, make sure they don't feed him too quickly at Shands. I'd be concerned about the increased numbness he's experiencing. It's a tough decision, but you really don't have much of a choice. We'll keep praying here---keep us updated.

thinking of you often,
Jodi

Serendipity
01-24-2008, 01:09 PM
I'm so sorry that your Dh is ill and that you and he and the children are probably under a lot of stress. :( I will be praying for all of you.

sdWTMer
01-24-2008, 01:19 PM
I'm sorry that you are having all this uncertainty right now. I am going through this right now w/ my dad -- will he or will he not have his leg amputated? I know that it is hard not knowing!

Hang in there. Thoughts and prayers your way! Btw, my dh name is Tim too!

Jackie in AR
01-24-2008, 02:50 PM
(((Pster)))

Try to focus on the positive - that the Drs. think it is most likely benign. That is a very good sign! It is never easy, though, when we have a loved one who has to go through surgery.

I'll continue praying!

shell in SC
01-24-2008, 03:22 PM
I know how stressful back surgeries can be on everyone in the family. DD had a major back surgery last year and I remember how much I worried about complications. I will pray that the Lord guides all the medical personnel involved and brings a peace to your family!

shell

Melora in NC
01-24-2008, 04:42 PM
Praying for you and your dh. My dh had a dermoid cyst (which is a weird but benign growth) partially removed from in his spinal cord (they couldn't get it all out because apparently it was sticking to the nerves?) at Shands in Gainesville, FL by a Dr. Patrick Jacob about 5+ years ago. You are wise to have it seen to right away. The doctors at Shands (well, at least Dr. Jacob) are very good.

Mama Bear
01-24-2008, 04:45 PM
Pster -- I am so sorry for the heck you're experiencing. Even if everything's ultimately "fine" it sure is a rollercoaster ride of stress, isn't it? I'll be praying and looking for updates. Tell your dh he's being lifted up.
Hugs to you all.

Pster
01-24-2008, 05:04 PM
Melora -
I have to contact you - will do via private message - but that is the doctor that we were recommended to see! I am very eager to find out more about what you thought of him & Shand's in general.

Thank you for posting & sharing!

Melora in NC
01-24-2008, 05:08 PM
Melora -
I have to contact you - will do via private message - but that is the doctor that we were recommended to see! I am very eager to find out more about what you thought of him & Shand's in general.
!

Please do! I will be pleased to answer any questions that I can! I was going to suggest that you e-mail me but didn't want to seem "pushy."

Kathy in MD
01-24-2008, 05:40 PM
nt

JudoMom
01-24-2008, 05:54 PM
Thanks for the update, Pster.

Andie
01-24-2008, 06:00 PM
I'm glad you updated. Will be praying!

Jenny in Atl
01-24-2008, 06:04 PM
Sending you good thoughts. An illness is never easy and you just wish it would go away. Like the others have said, think positive!!

Tammyla
01-24-2008, 06:14 PM
Sending out more hugs and prayers.

GVA
01-24-2008, 06:31 PM
I know that you feel overwhelmed and the tendancy in these situations is to want to get at the "truth" ASAP, but I'd recommend that if you can you see at least three surgeons before going forward with the surgery. I know that your DH probably has contacts that can help that way, but there's nothing like sitting down with different ones on YOUR case to see what they propose and to hear why they are going to do things. IMHO no spinal surgery is trivial, and you deserve a full understanding of the issues and options, no matter how "small" a specialist says it is.

DH has had six back surgeries now with a total of four surgeons for mechanical problems (the last one was done a pair of surgeons), and one of my closest friends has had four spinal surgeries herself for genetic spinal tumors and is facing brain surgery soon. Only one of those ten surgeries was it a case of exactly what the doctor thought with recovery exactly as expected, and in both cases there were mistakes made by doctors who were dealing with complexities they really weren't competant to handle. Go with the best you can find who truly knows his/her stuff and MORE.