Hello everyone! Today we are pleased to bring you our 22nd Case Study, this one from our friend Diane Schuler who was kind enough to tell us about her experience with having had a Cervical Schwannoma. We are very grateful to Diane for taking her time to share her story with us - we hadn't had a case study done yet on a single Cervical Schwannoma, so this fills a gap in our knowledge that was badly needed. Thank you Diane - and we hope this case study helps and informs those who need it! - Neil
PS. If you have a cervical Schwannoma and are looking for related reading, check out our blog "How Long Before I feel Better After a Cervical Schwannoma?". To go there click on this link:
http://schwannomasurvivorsandfighters.blogspot.com/2015/07/how-long-before-i-felt-better-after.html
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1) How old were you at the time of your diagnosis?
35
2) Do you have any history of Schwannomas in your family?
No, as far as I know I am the first one in the family to have anything like this. (Side note cancer runs in family)
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
Schwannoma was located at c2-3. Symptoms included periodic numbness in lower left leg. Sometimes mild like your foot falling asleep sometimes near extreme as in paralysis. That started around 2012 I believe. Symptoms would persist 2-3 months then go away. Then in Jan of 2014 I started getting an odd sort of double vision in my left eye. A series of tests starting with my eye doctor, and ultimately ending up with getting a head/neck MRI lead to my diagnosis. Tests included: EMG and Nerve velocity test on leg in 2012 and blood work to rule out stuff like lupus and Lou Gerigs, MRI on Head/Cervical with contrast, EEG (I have a personal history with epilepsy so there was a concern that it was returning) MRI on Lumbar and Thoracic with contrast to make sure I didn't have any more lesions (thats what they kept calling my schwannoma until biopsy). Rest of spine was clear, MRI of head neck showed schwannoma and a (probably unrelated) Venous malformation on right temporal lobe.
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?
They did an anterior cervical decompression and fusion on C2-3 and a laminaectomy. I was only fused on my left side as my tumor had worn a hole about a centimeter wide in my other vertebrae and there was no room for a screw. So they did a bone graft to fill the hole. I spent a grand total of 8 weeks in a neck brace. I have residual right side shoulder soreness (please note I am left handed so my right side probably gets useI less). but overall pain wise I'd say I generally sit around a 2 or 3 consistently but massage helps. Also, the tumor was causing consistent bone pain sitting around a 7 or 8 all day so this is a relief. I have roughly 90% mobility in my neck (excluding looking up I would put that at 50% or less likely due to fusion)
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?
The problem is a lot of the critical questions are going to give you answers like "lets wait and see" I for example had new nerve deficit on the surface of the neck. I doubt my doctor would have been able to predict that. It's mild, I like to explain it as not being totally blind but needing glasses. I can feel you touching me, but not nearly as well as I could before. So I would say ask if there are any nerves that may be damaged in the process of removal but expect an answer of we don't know until we get in there. Same with the question of how much nerve function will I get back? A good question to ask, but don't expect a good answer. I got nerve function back I didn't know I lost. I just suddenly noticed that my arms were warm again. I always thought I was just a typical woman, cold hands and feet. My mother is like that. Now my arms and feet are much closer to the rest of my bodies temperature. Other questions (this one bit me later) find out from your insurance how many follow up mri's you can have and how frequently. Due to the incomplete fusion, my doctor wanted to MRI me before I got out of brace. When he went to MRI me a year later, my insurance said no. If you have never had surgery, I would ask how the process works, from pre-op testing to recovery. I had my first (unrelated) surgery when I was 10, so I was a bit of an experienced patient as far as that goes. (this was my 4th, they keep putting new things in but this is the first time they ever took anything out lol)
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?
I would say I have had a mostly positive recovery. As for things I can't do about the only thing is look up for long, and curl up into a ball. I was a side sleeper, I find that that will hurt throughout the night. I bought a travel neck pillow and sleep with that sometimes. Sometimes I still find it helpful to sleep in a recliner. Recovery tip: stretch until it hurts then stretch just a touch more. You have to break up scar tissue in order to get mobility back. If you don't stretch you won't get it back. I remember the first time I could sit on the couch and look at my husband next to me, and it was a wonderful day. It took me a few months to get to that point. Also, massage. Doesn't have to be professional, you can do it if you can reach or have a spouse or loved one do it. But get massaged. I will say this, this was my first surgery as an adult, and I think that is what took recovery so long (from my perspective)
PS. If you have a cervical Schwannoma and are looking for related reading, check out our blog "How Long Before I feel Better After a Cervical Schwannoma?". To go there click on this link:
http://schwannomasurvivorsandfighters.blogspot.com/2015/07/how-long-before-i-felt-better-after.html
____________________________________________________________________________
1) How old were you at the time of your diagnosis?
35
2) Do you have any history of Schwannomas in your family?
No, as far as I know I am the first one in the family to have anything like this. (Side note cancer runs in family)
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
Schwannoma was located at c2-3. Symptoms included periodic numbness in lower left leg. Sometimes mild like your foot falling asleep sometimes near extreme as in paralysis. That started around 2012 I believe. Symptoms would persist 2-3 months then go away. Then in Jan of 2014 I started getting an odd sort of double vision in my left eye. A series of tests starting with my eye doctor, and ultimately ending up with getting a head/neck MRI lead to my diagnosis. Tests included: EMG and Nerve velocity test on leg in 2012 and blood work to rule out stuff like lupus and Lou Gerigs, MRI on Head/Cervical with contrast, EEG (I have a personal history with epilepsy so there was a concern that it was returning) MRI on Lumbar and Thoracic with contrast to make sure I didn't have any more lesions (thats what they kept calling my schwannoma until biopsy). Rest of spine was clear, MRI of head neck showed schwannoma and a (probably unrelated) Venous malformation on right temporal lobe.
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?
They did an anterior cervical decompression and fusion on C2-3 and a laminaectomy. I was only fused on my left side as my tumor had worn a hole about a centimeter wide in my other vertebrae and there was no room for a screw. So they did a bone graft to fill the hole. I spent a grand total of 8 weeks in a neck brace. I have residual right side shoulder soreness (please note I am left handed so my right side probably gets useI less). but overall pain wise I'd say I generally sit around a 2 or 3 consistently but massage helps. Also, the tumor was causing consistent bone pain sitting around a 7 or 8 all day so this is a relief. I have roughly 90% mobility in my neck (excluding looking up I would put that at 50% or less likely due to fusion)
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?
The problem is a lot of the critical questions are going to give you answers like "lets wait and see" I for example had new nerve deficit on the surface of the neck. I doubt my doctor would have been able to predict that. It's mild, I like to explain it as not being totally blind but needing glasses. I can feel you touching me, but not nearly as well as I could before. So I would say ask if there are any nerves that may be damaged in the process of removal but expect an answer of we don't know until we get in there. Same with the question of how much nerve function will I get back? A good question to ask, but don't expect a good answer. I got nerve function back I didn't know I lost. I just suddenly noticed that my arms were warm again. I always thought I was just a typical woman, cold hands and feet. My mother is like that. Now my arms and feet are much closer to the rest of my bodies temperature. Other questions (this one bit me later) find out from your insurance how many follow up mri's you can have and how frequently. Due to the incomplete fusion, my doctor wanted to MRI me before I got out of brace. When he went to MRI me a year later, my insurance said no. If you have never had surgery, I would ask how the process works, from pre-op testing to recovery. I had my first (unrelated) surgery when I was 10, so I was a bit of an experienced patient as far as that goes. (this was my 4th, they keep putting new things in but this is the first time they ever took anything out lol)
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?
I would say I have had a mostly positive recovery. As for things I can't do about the only thing is look up for long, and curl up into a ball. I was a side sleeper, I find that that will hurt throughout the night. I bought a travel neck pillow and sleep with that sometimes. Sometimes I still find it helpful to sleep in a recliner. Recovery tip: stretch until it hurts then stretch just a touch more. You have to break up scar tissue in order to get mobility back. If you don't stretch you won't get it back. I remember the first time I could sit on the couch and look at my husband next to me, and it was a wonderful day. It took me a few months to get to that point. Also, massage. Doesn't have to be professional, you can do it if you can reach or have a spouse or loved one do it. But get massaged. I will say this, this was my first surgery as an adult, and I think that is what took recovery so long (from my perspective)
7) Are you able to do all or most the things you did before?
Mostly I can do everything I used to be able to do. I will say that having surgery on your spine as compared to your foot is takes a much greater toll on you. I move much slower especially bending down and standing back up again. Otherwise, everything is basically the same.
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