United Brachial Plexus Network, Inc.

Hopefully I'm not violating any rules, but this is the only forums I could find regarding brachial plexus that had any activity.

I found a lump on my right side, above the collar bone (basically right on top of the first rib). We thought it was a lymph node, so the ENT visit got scheduled and then a CT scan. The CT scan was not helpful (indeterminate mass), so then a FNAC was scheduled (fine needle biopsy with ultrasound). The Radiologist kept triggering the nerve, so after the third try, he stopped and conferred with the ENT and they suspected a neuroma of some sort. Fortunately (or unfortunately) they got enough sample to confirm a Schwannoma.

So I'm seeing a neurosurgeon who said this is VERY rare, and that they just had a doctor retire after 40 years whose only seen 20 of these. I'm still waiting for the MRI (insurance company issues and all that).

I had some pain and numbness/tingling BEFORE the needle biopsy but it got much worse AFTER the needle biopsy. I'm on gabapentin now (300 mg/day, and just increased to 600 mg/day)

In the meantime, I'm hunting around for docs that specialize in this. I'm in Albany, NY.
I've got some names in NYC, Syracuse (Upstate Medical) and Rochester, but also finding a doctor that's in my network (United Healthcare) is interesting to say the least.

I've been researching quite heavily and have pulled a lot of scientific abstracts (I don't have medical access to the full articles) and it seems:
a) Yes, this is rare
b) If you have pain/numbness, then the tumor should probably be removed rather than let it wait (slow growing, and all that)
c) conflicting answers on needle biopsy. Some studies said this can increase the chance of post operative issues (ie, worse pain, neurological deficits, etc.).
d) Finding a skilled surgeon with experience with THIS type of tumor and location is key to successful post-operative results
e) I couldn't find anything where anyone had permanent loss of limb useage. Mostly seemed to be a few instances of artery severing (it's right next to the clavicular artery), but in all cases, that was repaired fine.

I've contacted Dr. Nath in texas, and got a call back right away, but then I found out that like in 2005 or 2008 he was cited by the Texas medical board for 20 cases of unnecessary surgery on children for BP injuries.

I've checked Johns Hopkins, but because I'm in NY, I cannot use their mail 2nd opinion service, and it doesn't look like they take insurance at all.

Anyone else ever have one of these tumors on their BP in their supraclavicular region? Seems like a lot of what I found are patients with these in their neck/spine or axillary (armpit?) region.

Thanks!

--Kevin

Dr Belzberg at Johns Hopkins:

http://ubpn.org/resources/medical/medic ... view=entry

Dr Wolfe in NYC at Columbia's Hospital for Special Surgery:

http://ubpn.org/resources/medical/medic ... view=entry

http://www.hss.edu/physicians_wolfe-scott.asp

Please keep us updated Kevin. We learn from every post.
Carolyn J
LOBPI/75

Will do, Carolyn. STILL waiting for an MRI. Talk about incompetence. Insurance company denied the pre-auth, sent me a letter stating the physician has withdrawn the request for the MRI. Needless to say I was a bit ticked off. Called the doctor, they said they have NOT withdrawn the request and that they were waiting for a form from the insurance company because it was mis-coded, and they still hadn't gotten the form.

I called the insurance company, they said it had been approved (on the same day the denial letter was dated) and they didn't know anything about a denial letter.

Then the doctor's office goes to schedule the MRI and the radiologist says they got the wrong body part (not upper arm, but needs to be neck/cervical), so they need to get ANOTHER pre-auth. I've been waiting like 10 days for THAT and now it turns out it's because they're trying to get the insurance company to CHANGE the existing approval and put the right code in. AUGH!

In the meantime, I'm 99% sure that Dr. Wolfe doesn't take United Healthcare (I already contacted HSS previously). I haven't contacted Johns Hopkins (their website indicates they don't take/accept any insurance, so not sure if that's a viable option). The doctor listed isn't in my provider network anyway.

I've got some names over at Rochester, NY (University of Rochester) for a Dr. Huang (who is listed in my provider).

So we'll see. The current Neurosurgeon I'm seeing will be present during the MRI, so I'll pepper him with questions as to what he's found with consulting with other local physicians and possibly examining consulting with "outside" physicians.

In the meantime, gabepentin seems to be helping, I'm working up to 600mg/day now. Hopefully that'll be it, but I can do 900mg/day they said before having to get re-visited.

Still not sure if this is a blessing or a curse. On the one hand it's not Hogdkins/lymphoma (even though that has a high cure rate--even at stage 4), vs this benign tumor that's so rare, hardly anybody knows about it and the "success" rates are all over the board. I'd hate to have a permanent nerve deficit (pain), but can't really find much on recovery rates,etc. since I don't have access to the medical publications (only the abstracts). And it seems to vary so much (where the tumor is at--neck, spine, axillary, etc.) how big it is, etc. etc.

At least I won't die from it (although technically there's a 1-5% chance it's malignant, but I think only a tumor removal and full biopsy would show that--not sure if an MRI would show that or not).

--Kevin

*Heart* and ((((HUG)))) , Kevin.
Good Luck. You are not alone, Ya know.
"Gramma Carolyn J
LOBPI/75

Just wanted to give an update. My surgeon in Albany, NY refuses to operate/remove the tumor and would rather pump me full of pain meds. I THINK it's because they are inexperienced here with this type of tumor. When I asked how many of these has he removed, he was very vague, and just kept saying "less than six".

Ok.

However, he referred me to Dr. Allen Maniker @ Beth Israel in NYC (I'm seeing him October 4th) and I found a Dr. Jason Huang in Rochester, NY (appt. on October 8th).

We'll see what each surgeon says after reviewing my case and I'll post back the results of what the consensus is.

Okay, so here's the scoop.

Dr. Maniker seems to be the more knowledgeable of the two (he's a little older, and has done more of these). Dr. Huang pretty much echo'd everything that Dr. Maniker said (mostly).

Basically: If you are having pain/deficit then the tumor should be removed.

Dr. Huang is moving to Texas Jan 1st, so I've decided to go with Dr. Maniker.

Tentatively scheduled for Oct. 23rd.

Oh, and there's apparently a SECOND tumor on the BP as well (below the collar bone). Joy. We won't know if it's really schwannoma or what until operating, but either way it should come out. I'll see how bad a shape I'm in with two scars and whatnot.

As long as I can use my arm/hand, and I don't have WORSE nerve pain, I think I can accept the consequences.

Hang in,"monis", we're pulling for you...& sayiing a prayer to for you too.
You are not alone. Thanks for your update and please keep us updated when you can.

(((((HUGS)))) HEAL!
Carolyn J
LOBPI/75

Well, had not one, but two tumors on the BP. Dr. Maniker removed them yesterday (10/23/13). I've got good hand movement, grip, but upper arm weakness. I can barely move my hand to my mouth or 45 degree angle. But they don't seem concerned by that. Not sure if it's nerve damage due to the surgery or muscle that they had to cut through.

Followup on 11/1/13 for incision, so I'll grill them then.

Hopefully it's not nerve damage.

Hi all(Mjonis),

I have a similar story and am worried about the outcome of my left arm after surgery. mine was originally thought to be an enlarged lymph node. A fine needle biopsy was done and shot horrible pain and shocks down my arm when the lump was touched. Results came back inconclusive and another biopsy was scheduled. The second biopsy apparently found abnormal cells. there was some added discomfort after both biopsies as new weird feelings emerged like i slept wrong and woke up with a sore shoulder, some pin pricks are also felt. I was referred to an ENT and he got me into an MRI. the Dr called and said I have schwannoma of the brachial plexus. I am now worried about my arm and what my chances are of it returning to normal and getting better.

Is everything okay with you Mjonis?