I was recently diagnosed as having a schwannoma or NF tumor on my upper left arm. It is on the underside of my arm - not really noticable unless I flex my muscle, then it bulges out and is very noticeable. I found the lump last winter and my doctor wanted to rule out possible breast cancer so I had a mammogram which turned out negative. My next step was an MRI and I was diagnosed shortly thereafter. I was never really given a definate diagnosis as to which type it is. We don't have very many neurosurgeons where I live and I haven't had good follow-up with the one I have been seeing. I just went through nerve testing nearly two months ago and I have still not heard back from anyone regarding the diagnosis.
I am starting to have pain and "shocky" sensations with this tumor. I am very worried about my future. I am a single woman supporting myself and I worry about the possibility of this getting worse. I am looking into switching doctors as I am not getting a good response or clarity with the current neurosurgeon I have been seeing.
It was suggested that I may need to have surgery to have it removed but I would have to arrange to have time off and finances could be a problem.
Any words of wisdom or just some kind words would be greatly appreciated. Thank you
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New to this - any advice?
- By dogzmom42
- Posted August 30, 2009 at 12:09 pm · 8 replies
- In Schwannomatosis
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Pain Neurofibroma Paralysis Breast cancer Schwannomatosis
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- By CindyLouWho
- Posted September 1, 2009 at 9:17 pm
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Sorry I may be confused but was this diagnosed as a schwannomas or a neurofibroma? What did they call the tumor specifically and how was it diagnosed....was there a biopsy? Neurofibromas are comprised of many different cells and features and schwann cells are one of them. However, Schwannomatosis and NF1 are distinct, totally separate disorders and on two different chromosomes. NF2 and schwannamotosis are both on chromosome 22. People with schwannomatosis tend not to show the standard pigmentation signs that we see in NF. If you have CALS and especially if you have the axillary freckling then you would more likely be a candidate for NF1. If it is a neurofibroma then those can occur even in the non-NF population and would not in itself make a diagnosis of anything. Folks with schwannomatosis typically do not develop the dermal tumoring that we see in NF. If it is schwannamatosis then in a significant number of cases it takes a segmental form where only a certain area of the body is affected so hopefully that will be the case. Pain is the most significant aspect of schwannomatosis. There is now genetic testing for all forms of NF.
Sorry for the 20 questions.
Cindy
- By dogzmom42
- Posted September 2, 2009 at 10:41 am
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I think it is a schwannoma, that is what one doctor referred to it as. The first doctor I talked to called it a nuerofibroma or schwannoma so I wasn't sure.
I figured that is why I would get on here and talk to some people who might know more than what I have been told.
From what I have seen on the internet, I think segmental schwannomatois is the correct diagnosis.
I have an appointment coming up next week to discuss the pain which has now become more intense by the day.
When I was diagnosed last year, I thought no big deal. Now that I am having some symptoms of the tumor it's now becoming a big deal and I'm scared.
Thanks for responding and I thank you for the information.
- By mnmtassano
- Posted September 22, 2009 at 10:44 pm
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Hi! I just had my 2nd benign Schwannoma removed from my (r) brachial plexus/axilla. The 1st 1 was removed almost 4 years ago by a cardiothoracic surgeon. The tumor was the size of a small lemon & was attached to an artery & ulnar nerve. Towards the end it caused me significant pain/numbess in my neck/arm/fingers. My pinky & thumb finger went numb frequently. Since the surgery, I still have some numbness in my arm. I just had surgery again (same spot) on 09/17/09. Tumor was pea-sized only & my recovery so far has been quite well. Surgery was done this time by the Chief of General Surgery @ Kaiser in Sacramento,CA. I wish you well & hope that it turns out well for you. >:)
- By DonderSchwab
- Posted September 29, 2009 at 8:16 am
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Hi, I was diagnosed in 1996. I also have the tumors on the inside of both upper arms. Over the last 15 years I have developed sharp pains in my upper body, mostly in my arms. Other pains are dull and shocky like you say. My pain has gotten to the point I need to do something about it. Have an appointment tomorrow with pcp and will asked to be referred to a neurologist. My tumors are growing on my spine but we have not had a ct scan or mri since 1996.
- By jelm
- Posted September 29, 2009 at 9:46 am
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Hi dogzmom! Waiting to find out sometimes is half the agony! Isolated schwannomas can/do occur in the absence of NF. It sounds like you may have had an EMG/NCV 2 months ago and are still waiting for the results. Sometimes no news is good news, but I would keep pushing for answers and make sure there's a clear understanding about the location of your schwannoma if indeed surgery is recommended.
I'm no doctor here, and no two people are the same. I've seen recommendations for and against surgery. My son has 2 quarter sized presumed schwannomas(NF2) in his left forearm (not externally visable) his neurosurgeon said these 2 are attached to sensory nerves and surgical removal would likely take away his forearm sensation. We left them alone...still there.
He had a left upper arm radial nerve schwannoma (not externally visable) that caused left hand paralysis, and complete wrist drop, including fingers. A few surgeries and 14 months later/ 3 tendon transfer has given him nice use of his lt hand again and he's right back playing 6th grade football without complaints. I would keep pushing for answers and make sure you feel confident in the physicians recommendations on how to proceed. Good luck!
Julie
- By nelly004
- Posted November 2, 2009 at 5:04 am
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Hi
I am also new to Inspire and also trying to find out any info i can about Schwanomatosis so totally sympathise with you! My husband had a Schwannoma tumor removed from his left optic nerve in 2004 and has 2 other tumors 1 on a left gluteal nerve and another on his right thigh nerve. We saw a surgeon here in New Zealand who was very blunt about the possibility of my husband loosing sensation in his right lef and muscle in his right gluteal. He suffers from pain like you describe as "shocks" Schwannoma tumors are known as slow growing tumors my husband has been walking around with these "shocks" of pain for over 6years now. He isn't on any pain relief but after work he has a steamy hot bath which seems to give him some relief.
- By jerecare
- Posted November 2, 2009 at 6:59 am
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People like to talk about themselves. Wow.
First, I would not get all caught up in the dx. Funny the outcry about not wanting to be labeled, more than a label, whatever then people turn around and try to label everything.
Second, if insurance is an issue, do you belong to a close-knit church? I just read an article in ChristianityToday about how the Amish eschew insurance but come together to pay medical bills. Consider joining them. I am :-) Also, most hospitals/doctors will work with you on payment arrangements. My parents, then myself, paid $25/mo. on the balance of hospital bills.
Third, don't get scared. Any dog person knows, one must be strong to have dogs. So, consider yourself strong and capable.
Fourth, get humor.
Fifth, get active and your mind off the pain. Warble: "Haven't got time for the pain..."
You are more than a dx.
- By dogzmom42
- Posted November 3, 2009 at 9:28 am
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Thank you everyone for your advice and support.
I have been feeling really good lately and I am done with the doctor's visits for now.
I was a bit taken aback by jerecare's response to my post so here is my reply to him:
I don't know if your post was meant to inspire or encourage me but I felt the need to respond. As far as people wanting to "talk about themselves," this forum is for like minded people with a common bond. That is why I came here. Other than my family and a few friends, no one knows I have this. I certainly don't go around whining about it or "labeling" myself as a person with a disorder. If you read my post, you can see I was recently diagnosed and I was scared (somehow the word "tumor" brings about fear in a lot of people, yes?) but after doing a lot of research and talking to other people, that calmed any fears I may have had.
Financially, I am OK. I do have insurance but as you know, there are still co-pays and such and I have kept up that just fine. I have paid it all with my own money - no help from anyone. Part of the reason why I was worried was because of the fact that I do pay all my own bills and if I take time off for surgery, that would concern me.
As far as being strong??? Honey, you have no idea. I have been through a lot in my life but if you were to meet me or talk to me, you would have no idea. I do consider myself strong and capable, even get compliments on how strong I am. I have worked all my life, volunteered (animals are my passion, as you can tell!) I raised my son as a single, working mom - I could go on and on but I don't want to brag (lol)!
Get humor? Do you see my pic? That smile goes with me everywhere!
Last but not least, get active you say? Hmmmm, let's see, I love to walk my dog, take him to the dog park., etc. When I go to work, I will be working two AM sorts unloading boxes and then will work an an afternoon sort staging boxes - a very physical job. When I went to my doctor to show him my tumor, he noted I had great muscle tone! (ooops, bragging again!)
Anyway, I hope you don't take offense to this but I think assumptions were made when they shouldn't have been.
You and I are in no position to minimize anyone's concerns, pain, fears, whatever. Sure, I see some people with a host of medical problems who whine and complain, don't want to work because they claim they are "disabled" when they are just lazy and self-absorbed. There are always going to be people like that, it's a given.
There are also people who really do have valid medical concerns and are just trying make it day by day. Those are the people that inspire me.
Take care and have a nice day!
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