Case Study # 26 Lori Carlberg and the Story of Her Jugular Foramen Schwannoma

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@yahoo.com

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Case Study # 25: Rachelle Magill and The Story of Her Orbital Schwannoma

Hello everyone!  We are pleased to bring you our 25th case study, this one the story of our friend Rachelle and her battle against an Orbital Schwannoma.  This kind of Schwannoma is an extremely rare one, and Rachelle was kind enough to share her story so that we would have a 2nd Orbital Schwannoma Case Study in our online archive.  If you would like to read our other case study on this subject, click the link at the end of this article.

We sincerely thank Rachelle for sharing her story, and hope that it is of use to those who are struggling with this same kind of Schwannoma.

Best to you all, Neil Myers - page coordinator
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1)  How old were you at the time of your diagnosis? 

Age 45

2)  Do you have any history of Schwannomas in your family?

No history in my family, but I was diagnosed with a lazy left eye as a child.

3)  Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis? 

My left eye started bulging in 2003 and it was suggested it could be a thyroid condition.  I went to my primary care doctor who did not agree it was a thyroid condition since it was only one eye.  The primary care sent me for an MRI and the eye surgeon thought it was a hemangioma  and it would fall right out.  During the surgery he found it was a schwannoma and removed part of it.  Since it was in my left eye orbit pushing my optic nerve, he was worried about removing more since I could lose my vision.  At that point it was just being monitored.

Over time, the schwannoma grew and then I could not close my eye all of the way.  The lower lid was being pushed out in the inner corner so one could see the redness of the inside lid and my eye was painful due to not being able to close.  The time had come for a second surgery.  This was in 2015.

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) 

 A Y shaped piece of bone in the left corner of my eye was removed (part of where the eye brow is and the top of my cheekbone to where they meet the temple) and the schwannoma was partially removed, it was explained it was like peeling an onion.  The bone was then put back in and that was that.

The second surgery was done the same way as the first as far as access to behind my eye.  I now have a new surgeon since my original surgeon retired.  The new surgeon said she used a device like a Q-tip to remove the tumor since a knife is too risky due to the optic nerve.  She likened it to an ice cream cone with the pointed bottom lying sideways (which would be the back of my eye socket) and the material behind my eye ball being like sticky jello in the cone, and trying to remove tumor.

After both surgeries I had peripheral double vision in the left eye but it was dramatically increased with the second surgery.  I had glasses with a built in prism after the first surgery but had to get a Fresnel (stick on) prism for my glasses after the second surgery.  The Fresnel was difficult since it diffused light in strange ways and made it difficult to see well.  I had strabismus surgery in 2016 to correct the double vision as much as possible.  I have only a small built in prism now and I can function much better.

I have had a significant amount of occipital nerve damage and pain as a result of the first surgery.

My second surgery was deemed successful but the swelling in my eye only decreased to a point.  The MRI I had 6 months after the last surgery (2015) showed the tumor grew back to almost the size it was prior to the second surgery.  It is lying in a little different place so I can close my eye all of the way but I will be having my next MRI on Friday since I have to have one every 6 months along with visual field tests.

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?  

Go to a doctor who has done this type of surgery before and one who is a neuro-opthamologist.  Don’t waste time by going to someone who has no experience since your vision is at stake.  Don’t be afraid to get a second opinion and don’t hesitate to go to someone else who may be more qualified.  The first surgeon I saw gave me a difficult time about getting paid by my insurance, so I found someone else, even though I believe he was a qualified surgeon.  The waiting game is a good idea but I got to the point where I could no longer wait for the second surgery.  I probably could have waited longer to have the first surgery but I agreed to it since the doctor thought it was a hemangioma, not a schwannoma.  But I still felt better knowing what was in my head after I found out what it was from the first surgery, and that is was not cancer.  If you don’t feel confident with the opinion you have gotten, consider contacting places like Johns Hopkins or Cornell Weill who will look at a condition without seeing you.  It is out of pocket costs and you have to get paperwork, etc together, but those options are available.  I considered this route but since I live in the Boston area and can be at Massachusetts Eye and Ear Infirmary inside of ½ hour, I decided against it, especially since I had seen the surgeon I decided not to use-I considered him a first opinion.  I also feel at this point I know I will have surgery if I cannot close my eye or a condition like that happens.  Other than that, I wait and get monitored.  The recovery is awful so as long as I can see, I am waiting.  I was also told if my double vision gets worse, I can have strabismus surgery again without schwannoma surgery.

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) 

The positive things from recovery have been working with a good pain clinic and PT and OT to learn how not to have as much pain and how to set up my desk at work, etc, so the pain and double vision doesn’t interfere as much.  As I stated earlier, the strabismus surgery was very successful but all is not perfect and my eye is still protruding.  But I am much better than before.  The most difficult too was waiting for the swelling to go down so I could get new glasses.  I am fortunate to have an optometrist who will spend a lot of time with me to prescribe glasses.  Many people do not know that an opthamologist cannot write a good glasses prescription since they do not really work with the movement of the eye, only eye diseases.  An optometrist specializes in eye movement.

 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) 

 I am not able to do what I was able to do before.  I cannot drive for as long of a period of time since it takes more concentration to be looking in one direction (like straight ahead) for a long time.  I cannot exercise the same due to the fact that I get off balance with the double vision and also with some of the nerve pain.  I get exasperated more easily because I cannot do what I was once able to do, but it is more from the pain than the vision.   I also cannot read for as long of a period of time as I used to be able to.  And I cannot sleep in the same positions as I used to since my eye bulges.  But I am not any younger either (I am 59), so that too has something to do with it. 

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Here is the link to our other Orbital Schwannoma Case Study:
http://schwannomasurvivorsandfighters.blogspot.com/2015/05/case-study-16-susan-hicks-and-story-of.html

And if you'd like to speak to Rachelle, you can email her at: Jerseygirl057@aol.com