Newly Diagnosed Sacral Schwannoma

[bluelove10]

Hi everyone!

I'm so very glad that I found this forum. A recent biopsy just confirmed that I have a schwannoma from S1-S3 (more on the right side) approx 3.4 x 2.6 x 6.3cm. I've been to one neurosurgeon and one sarcoma specialist and both said we are going to do the "wait & see approach". My only MRI was in Dec. 2011 & they want to get another one done in June to see if it's growing. I'm not super excited about waiting, as I kind of just want this thing out, yet I understand that surgery can be pretty tough, too. They told me that the surgery would be 8-10 hrs & I could be in the hospital for 1-2 weeks after surgery. Is this accurate with any of your surgeries? My radar may be off, but it felt like they were trying to scare me out of doing the surgery (but they also weren't really giving me the option to choose, either).

I'm not in debilitating pain, but I definitely have a great deal of discomfort. Quite often I'll have throbbing pain/achiness in my tailbone, pain in buttox/sciatic pain in right leg, lower back pain (not everyday,but most days), nighttime feet cramps, and thigh soreness/achiness. I'm also having severe cyclical abdominal pain with low grade fever (but both specialists don't think the abdominal pain I'm having is related to the tumor).

I've been very healthy my whole life (I'm 29), so I'm not too familiar with having to go to see specialists, what questions to ask, etc. Any advice you can give would be great!!

Thanks in advance!

[kansasmom]

"They told me that the surgery would be 8-10 hrs & I could be in the hospital for 1-2 weeks after surgery. Is this accurate with any of your surgeries?"

That seems pretty accurate. My son's SCT was L1-L5 and his surgery was about 5 hours and he was in hospital for about 2.5 weeks. From what I have read, the sacral area is hard to access for surgery. The neurosurgeons I've worked with for my son have not been keen to operate until they think he would be worse off if they leave him. Also, they are not always able to get the whole thing out, depending on location and how the tumor relates to the nerves.

If you are not happy with the opinions you have so far you can ask Dr George Jallo for another opinion. He does this for free and just needs a copy of your MRI scans. Here is a link to his resume, which includes his email address: www.hopkinsmedicine.org/neurology_neurosurgery/cv/george-jallo.pdf

[bowtruckle]

Hi BlueLove,

I also have nerve sheath tumors (possibly schwannoma) in the sacral region - S1 and L5, on both sides of the spinal cord. My symptoms are very similar to yours (right sided sciatica, hip and buttock pain, weird sensory issues on my calves, pins and needles in the soles of my feet and sometimes a sore big toe & low back pain), and while not debilitating, they are causing me discomfort.

In terms of surgery, the first NS I saw said the operation would take "at least 6.5 hours" and thought I'd be in hospital about a week. I will be seeing another neurosurgeon (2nd opinion) at the Mayo Clinic in Rochester a week from today. I'm curious to see what he will say - but will definitely post an update to let you know.

Like you, I also have had abdominal pain (but without the fever), which is how I came to be diagnosed. The tumors were found when I had a CT Scan to check my appendix and bowels. Both the radiologist and gastroenterologist thought that the abdominal pain was not related to the tumors. But the neurosurgeon thought that the tumors were more than likely responsible for the pain. The CT Scan showed mild inflammation in several sections of my bowel and the tip of the appendix (but there was no sign of infection there), but a subsequent colonoscopy gave me the all clear in terms of inflammatory bowel disease.... So, I'm still none the wiser.

All I know is that because the tumors both extend extradurally into the pre-sacral space (dumbbell type), they could be compressing organs there. That may also be the case with you. It's something I intend to ask the NS next week.

The first NS I saw said that while there was no rush for me to have surgery, he felt that I would be better off having the tumors removed sooner rather than later - especially seeing as I am quite healthy now (so recovery would be easier) and that as the tumors grow and further compress organs and nerves, loss of bladder and bowel control would be likely. I'll see what they say next week, but I am leaning towards getting them out.

Is the NS you have seen experienced with the removal of these type of tumors? I know you saw a sarcoma specialist, but my understanding is that sarcomas are a whole different ball game - very aggressive, and often require a complete sacral amputation - which is pretty drastic stuff.

~ Kirsty

[bluelove10]

Thanks Kansasmom, I appreciate any advice/information I can get! This is all very scary and overwhelming at times.

[bowtruckle]

BTW - I second Kansasmom's recommendation to contact Dr. Jallo. I emailed him the radiologists reports (but didn't send MRIs) and he was very quick to respond. He's a great guy to do what he does without charge!

[bluelove10]

Kristy,

Thank you for sharing your story-it's comforting to know that I'm not the only one feeling this way and having the symptoms that I am! PLEASE do let me know how your apt at Mayo goes.

I had a CT done first also, and they too found bowel inflammation (which they too thought it was Crohn's) and swollen pelvic lympnodes. This scan is also where they found my mass. Had a follow up with an MRI to further investigate. Had a colonoscopy too, and was not IBD either.

The NS said that your organs in your pelvis (intestines, etc. we're strong and would push the tumor out of the way, and wouldn't cause any irritation (which I didn't necessarily think made much sense, but I'm certainly not a dr!). She also said there was a possibility that the tumor could stay the same size and not grow any further, so wait and see at the next MRI done in June.

I feel the same way sometimes. I think - I'm healthy now and would heal much better now. Also, if you wait until your nerves are being compressed you may not ever regain the sensation of those compresses nerves. BUT, then again, the intensity of this surgery certainly has me scared...

Well, I saw 2 dr.s-saw the sarcoma spec. first, then she referred me to the NS. She said yes, I've done many of these before, but didn't elaborate on a number or details (and I didn't ask further either). The NS is at the U of Michigan hospital, which is a very good hospital, so it gives me faith in what she is saying to some extent-just still not sure...a couple of more opinions would make me more comfortable, I think.

Bowtruckle-thanks for your advice! I am planning on doing that. It really is great of him to do this! Does he also give recommendations for Dr.s locally that I can consult with? Is it better for me to send a CD of my images (CT & MRI)? I don't have actual films (just a CD) so if I sent via email, it would have to be print screens from my computer which I'm sure would just work fine.

Thanks again everyone for your comments-it really helps!

Blue love

[kansasmom]

The last time I conversed with Dr Jallo he said he can take the scans through a website upload. If you shoot him a quick email I'm sure he'll explain what you need to do.

[Lisa2]

If you email and get Dr. Jallo's OK, he will send you the link. If you have problems with the upload, there is a helpline you can call and they will walk you through it. I was able to make initial contact, get ok, do upload, and get Dr. Jallo's opinion all in the same day! Good luck!

[bluelove10]

Thanks Lisa2 & Kansasmom-that helps! I'll let you know what he says. I won't be able to send to him till after work, as my files are at home.

[bowtruckle]

Hi again,

I wish I had known about the upload link for Dr. Jallo! That's fantastic. As it was, I only emailed the radiologists' reports because I had already sent my only CDs to the Mayo via FedEx - which wasn't cheap from Bahrain!

I would definitely contact him. I was concerned that I shouldn't be waiting until April for my second opinion (I was diagnosed in December), but he really put my mind at ease. Essentially, he said that unless I developed bladder control issues I would be fine to wait until April for the evaluation at the Mayo, and scheduling surgery in the summer would also be ok.

I thought you might be interested in an article I found on giant sacral schwannomas (you can download it for free from the following link: informahealthcare.com/doi/abs/10.3109/03009730903359674 ) They can grow to be pretty large! My thoughts are that the smaller they are, the easier they will be to remove - but of course I'll see what the NS has to say next week.

Have your symptoms remained the same for a while, or have they progressed? Mine have gone from the occasional hip/sciatic pain, to fairly constant pain in the last 5 months. This may be directly related to the tumor, or could be the result of 25 years' worth of uneven wear on my hip joint (I walk with one foot at an angle - I guess that is probably tumor related).

I'll let you know what happens next week.

Kirsty / Bowtruckle