Hello everyone! Today I am pleased to present our 26th Case Study, this one the story of our friend Lori Carlberg and her jugular foramen Schwannoma. This is another kind of rare Schwannoma, and we are so very grateful that Lori took the time to share her story. She has been through quite a struggle - and she has been kind enough to share her story in the hopes of helping others. Thanks so much to Lori for sharing her experiences! - Neil
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1) How old were you at the time of your diagnosis?
I was 39 when I was diagnosed
2) Do you have any history of Schwannomas in your family?
There is no history of schwannomas in my family
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
My schwannoma is located in my jugular foramen.It affects cranial nerves 9, 10 and 11. I had terrible headaches mostly on the left side of my head. The pain would start in my neck and travel up through my head and would just ache and pound and nothing helped it. I could barely get out of bed, I would constantly vomit and the pain was just too much for me. My husband was in Iraq at the time (he is active duty Army) so my daughters who were 14 and 17 at the time had to take care of me. My oldest took me to the emergency room and long story short, they couldn't find anything wrong so just loaded me up with painkillers. I didn't care at that point. I just wanted to sleep and be pain free. The painkillers basically knocked me out for 18 hours a day. When I was awake the pain was still there. My daughter took me back to the ER the next week. They did CT scans, blood work and still nothing. They told me to see a neurologist. I went the following week to see a neurologist and he immediately sent me for an MRI. That is when they found out it was a schwannoma.
4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)
I have had 3 craniotomies. The first one was Sept of 2009. My schwannoma is dumbbell shaped so part is in my head and the other part is my neck. When the surgeons first went it, they were going to try to get the whole tumor but they only opted to get the top part. After the surgery the surgeons told me in order to get the whole thing, they'd have to cut my facial nerve, cut my auditory nerve (then I'd always be deaf in my ear) and I may possibly need to have a feeding tube because I could have swallowing issues. I actually felt pretty good after that surgery. I had been going for bi-annual MRI's to keep an eye out for regrowth. In 2011 they found it growing back (it grows back like a fluid filled cyst which causes problems as in headaches and head/neck pain) My neurosurgeon said it was time to operate again so he did in the summer of 2011. The following spring the tumor was growing back again in that fluid filled cyst. I then had the cyberknife performed to see if the radiation could finally get rid of it. All seemed well until the summer of 2014. I started getting headaches again and I just wasn't feeling myself. I told my husband that I think the tumor is causing problems again. I ended up in the ER twice in the same week. 5 days later, I had my 3rd craniotomy. It's been a long road. I just had an MRI yesterday to check the growth. I've been having head pain again so I'm not sure what's going on. I would say my surgeries have been successful but in my instance my tumor keeps coming back in cyst form which causes problems with cranial nerves 9-11.
5) Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?
As far as questions go, I feel I asked my dr's quite a few questions and my dr's were very open and honest about what could happen. Because my tumor is in such a rare spot, a lot of different things could go wrong. There are so many nerves that could be affected. I would just tell people to ask any questions whether you think it's a dumb question or not. Make sure the dr's tell you what exactly to expect when you are healing. That's one area where I don't think my dr's were clear about and of course I had no idea what to expect. It's not fun recovering after brain surgery. But I've had 3 now so I know exactly what to expect. On a side note, I have dealt with a couple issues that happened during my surgeries. After my first surgery I started having problems with my shoulder. Come to find out, they think it happened because of the way I was positioned for so long. After my 2nd surgery, my voice started getting very weak. They nicked my vocal cord during surgery and now I have a paralyzed vocal cord. So, there are always other things that you have to be careful about during these risky surgeries.
6) Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you? (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)
I have definitely made a positive recovery but I feel like I'm still dealing with it 8 years later. I am a positive person so I try to look for the good in everything. There is a good chance I will be having another surgery but I totally know what to expect now. I'm always in ICU for 5 days after surgery then they let me go home. The first 5 days are NOT fun. I want to get out of the hospital so badly. It's so hard to sleep there and it's so uncomfortable. After I come home, I have another rough 5 days. I try to start weening off the painkillers about then. Painkillers and I don't mix well. They usually make me nauseous so I try to get off them as soon as possible.
7) Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)
For the most part, I'm able to do everything I did bt (before tumor) I try to avoid roller coasters or anything that could hurt my neck. I feel my neck isn't strong and since I still get headaches/head pain frequently, I shy away from activities that could make it worse. I may always have part of this tumor in me unless the dr's decide to try to go in and remove the entire thing. In that case, I'd be deaf in one ear and possibly have facial paralysis and swallowing issues. I really hope that never happens. In the meantime, I enjoy my life fully everyday. I think God for all my blessings and even my hard times. It is what makes us stronger people.
Lori Carlberg
beachmama2005
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