New here, weirdly placed tumor!

[cecetalk]

Hi everyone!

My name is CeCe and I was just diagnosed with a very unexpected Peripheral Nerve Sheath Tumor in between my spinal cord and right lung! I was at Mayo Clinic, luckily and weirdly, pursuing about a year's worth of unexplained medical problems. Mayo is where I had the tumor removed last Friday (Dec 26) the day after Christmas by two neurosurgeons and a cardio-thoracic surgeon. All three ladies and all three BADASSES. It turned out to be a Schwannoma and it was pressing against the apex of my right lung and lying in my sympathetic chain. It partially involved my T1 and T2 nerves and was approaching the neural foramen.

I am 20 years old and have probably had this tumor a few years. When Mayo found it on a chest CT that was meant to look at a bunch of swollen lymph nodes I had, they went back and compared it to an outside MRI I had done in 2010 after a horseback riding injury where they also spotted the tumor. They were shocked when I said I had never been informed of a small tumor four years ago. It had tripled in size, now being about 3.5 cm at its longest part.

I had VATS done to remove the tumor and don't have sensation still in my right arm and some weakness in my hand. Hopefully with hand therapy it will come back. I guess my main questions are, has anyone else had a tumor in a similar place? What about being so young, any other young ones out there?! Also, how many of you have had recurrent tumors? They want me to check every so often to make sure I don't have anymore, is this the same for you guys?

Mainly though, I want to know what kind of symptoms you guys had with symptomatic Schwannomas or other tumors. My story is kind of complicated and the doctors don't know how much of what I was experiencing was caused by the tumor or if it was just an incidental finding. For about a year, I have had recurrent low grade fevers, frequent infections, skin problems, headaches, facial swelling, eye problems, chronic neck and back pain. Then, starting this past May, I started getting so sick I couldn't do anything. Couldn't exercise, walk my dog, ride horses, nada. And I am a super active 20 year old. just last December I was on a trip hiking an 8 hour volcano. I got vertigo, tachycardia where my heartbeat was constantly 100-170 at rest. All these physical symptoms gave me horrible anxiety. I felt like I was dying and no one knew why. Doctors felt that there WAS something wrong with me, they just didn't know WHAT. By September, I had lymph nodes pop up that were so big it was starting to be worrisome. They took one out in my neck but all it showed was atypical reactive follicular hyperplasia. I had digestive problems, was so tired I couldn't even think straight. Which is why we ended up at Mayo. And are so glad we did. I was diagnosed with POTS which they said COULD be the tumor because it was close to my vegus nerve and because it was in my sympathetic chain could account for the autonomic dysfunction. They still can't explain the lymph nodes and why I have so many "reactive" nodes. My supraclavicular nodes, mediastinal, hilar, several near my trachea, and more are all enlarged and big enough to be noticeable on CT scans. While removing my tumor, my surgeon did a mediastinal lymph node dissection because my pulmonary/chest ones were so inflamed and at the time she wasn't sure if the tumor could be something else so I think she wanted to get as much as she could while she was in there. They showed up benign like my others saying they were just reactive.

Has anyone had a similar experience? What advice do you have for a new Schwannoma survivor? I am recovering and will be for about a month. I haven't really found much elsewhere so I would be ecstatic to have some support from this community!

Happy New Year everyone.

[lw]

Hi Cece,

Your story is quite similar to mine, although my tumour is a neurofibroma. My first symptom, although I didn't know it at the time, was chronic severe chest pain. This started when I was 17 and got progressively worse over several years. Towards the end I was unable to sleep and had difficulty speaking due to the pain and pressure. When I was 26 I virtually lost the ability to walk overnight and at that stage sought urgent medical assistance. I had a MRI and a large tumour was detected, half of which was in my spinal cord, the other half was in my left lung and compressing my aorta. By this point I was unable to pass water and was rapidly deteriorating. I had emergency surgery and it was extremely traumatic. Although I had no pain in the early days post op, I was effectively paralysed and unable to walk for many months. Frustratingly enough I had come out even worse than I went in - I had more a lot more numbness and couldn't stand up unless supported at both sides. I never left my home for over a year and, for a long time, thought this was it for me. Six years on I can walk unaided but I'm still not fully recovered. However I am significantly better than I was before surgery now and, if you saw me in the street, you would never know I have limitations. It has been an extremely long process and my advice to anyone is to be patient and not look too far ahead.

The half of my tumour that was in the spinal cord was fully resected but the other half, until last year, was continuing to grow into my lung/heart valve. I was referred to a heart surgeon and have been told that I will need to be monitored periodically. At the moment surgery has been ruled out for the foreseeable future. I still get chest pain but, ironically, it has switched from the left side to the right (the left side of my chest and torso is now completely numb)! It seems from reading these boards that monitoring with MRI is standard practice for SCTs. Unless your tumour is part of a genetic condition it is unlikely that you will get anymore (this is what I've been told by doctors). Also, if the tumour was fully excised during surgery you stand a better chance as you won't have to worry about the thing growing again.

It is very early days for you, Cece, and you will continue to improve as time goes by. I wish you all the very best for the New Year and hope that you will stick around as this is the best place to go for information. And we are a nice bunch!!

Leah

[funnywalk]

I absolutely agree with LW. Kind, helpful and the best thing - we all know what we are going through. Very best of luck to you, FW