Schwannoma Case Study # 12, Carol Zwick and the Story of Her Lumbar Spinal Cord Schwannoma

Welcome to Schwannoma Case Study # 12, this one featuring our friend Carol Zwick and the story of her lumbar spinal cord schwannoma.  Carol has been a long-time and treasured friend of the Schwannoma Survivors Facebook page, and we thank her for taking the time to tell us more about her story!  Neil
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1)  How old were you at the time of your diagnosis?

Both the onset of my symptoms and my diagnosis took place when I was 61.

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

None and I had never known anyone who had one.  

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

My Schwannoma was located at L4 and L5. My only symptom was acute and debilitating pain. In approximately six weeks I was losing the ability to walk. In March I was hiking in Sedona and by the middle of April I was having difficulty walking. The onset and progression was very quick.

My internist diagnosed my tumor and I was sent for an MRI the same week I saw him. I know this is not the norm and I feel very fortunate to have the diagnosis and the surgery in a short period of time.  

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 had my surgery -- a laminectomy -- a month after diagnosis, and I consider it necessary and highly successful. 

 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 most important issue for me was the outcome. My doctor was very candid and let me know that the surgery might not put an end to the pain. I would also ask about the recovery process, especially the estimated length and how pain would be controlled. 

 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)

My recovery went well. I was in the hospital for two night and I was able to walk when I went home. In three weeks the worst of the pain was gone and I was walking three or four blocks a day. I went back to work a month after the surgery and I started physical therapy the next week. The therapy was very helpful and saw a physiatrist three months later. He had good advice about the long term prognosis, which was more his area than my surgeon's. 

The part I would have wanted more help with is going off the pain medication. I stopped too quickly -- there was no schedule -- and had a week of awful depression. 

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)

With two exceptions I am back to where I was before my symptoms. I am able to walk without pain at least a mile at a time and my balance is good. The debilitating pain is gone. Per my physiatrist I don't do a lot of lifting above my head, e.g., a suitcase into the overhead on a plane. I am also unable to cross my right leg and I still have some nerve pain in my right leg -- hip to knee -- but it is tolerable.   

Schwannoma Case Study #11, Gina Forde and the Story of Her Thoracic Spinal Cord Schwannoma

Welcome to our Schwannoma "Case Study" # 11, which features friend of the Schwannoma Survivors page Gina Forde and the story of her thoracic spinal cord schwannoma.  Personal stories are a great value to the Schwannoma Survivors & Schwannoma Fighters Facebook page and blog - and we sincerely thank Gina for sharing her story, so as to get useful information out there and help others!  Neil
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1)  How old were you at the time of your diagnosis?  

27 

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

 No 

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

Spinal Schwannoma located at t10-t12.

Symptoms mainly consisted of severe back pain which was aggrivated when lying down. I was unable to lie down completely flat for a period of 10 months running up to diagnosis and operation during which time I had to sleep upright on a recliner seat at a 45 degree angle. Some nerve spasms through my legs.

General back pain was located in my lower left side and more specifically my hip which was why diagnosis took its time. It was 8 months of redirection from one department to another before my nerves were bought into question and an MRI was booked for my entire spinal cord.

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)

After discovering the lump via MRI (schwannoma diagnosis post surgery) I was referred to Queen Elizabeth hospital in Birmingham and within 2 weeks I was in for surgery. Laminectomy of t10-t11 and removal of intradural extramedually tumour. which was diagnosed as a schwannoma post surgery after tests.

I was in surgery for around 6 hours and in hospital for 9 days as I suffered with severe headaches.

I would consider my surgery to be successful. I have complete numbness on my left hip which I have been told I should regain feeling within 2 years. I have the odd spasm and mild back pain when lying down. I am nearly 10 months post op. I returned to full time employment 4 months post op. I am due for annual review with my surgeon in November.

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? 

In all honesty as I wasn't aware of what I had until afterwards I don't feel able to comment.

I got to the stage I was in so much pain I would have elected for surgery whatever the risk and I have only found out more about schwannomas through my own research.

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)

Heavily reliant on friends and family for the first month - moved to sisters.

Dependant on strong pain relief for first 8 weeks. Stable recovery with 3 months physiotherapy thereafter.

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) 

Everything back to normal apart from numbness which doesn't hinder me. 

Schwannoma Case Study # 10, Scott Sarah and The Story of His Acoustic Neuroma / Vestibular Schwannoma

Hi Everyone!  I'm pleased to offer our 10th Schwannoma Case Study, this one featuring our friend Scott Sarah and the story of his surgery and recovery from Acoustic Neuroma / Vestibular Schwannoma.  (Some of you may know that this is the kind of Schwannoma that affects the major nerves going from the ear to the brain.)  We thank Scott very sincerely for being a part of the Schwannoma Survivors & Schwannoma Fighters Facebook page and blog - and we wish him lots of luck for his continued recovery!  Neil
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1)    How old were you at the time of your diagnosis?

I was 37 when I found out about my Schwannoma.

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

I do not have any family history of Schwannomas.

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

Mine was located in my middle ear, it is called a vestibular schwannoma, and it came from my brain stem and into my middle ear. It started with mild hearing loss which I thought was just fluid in my ear. And when I was 27 or 28 I got really sick and thought I got bells palsy but it was the schwannoma growing into my ear attaching itself to my facial nerve thus weakening it. Since it was such a slow grower it took another 10 years to completely fill my middle ear.

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)

On 6/30/14 they used the translabrynthe approach due to the size and they could not save my hearing. I have a fat graft in my ear, which hemorrhaged when they took the fat from my stomach. It was a 6-hour surgery due to the size of it.

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?

Can you save my hearing? What complications are there? How long will the surgery take from start to finish (they told me 4 hours weeks prior and then the day of it went to 6 hours)? How long will it take me to recover? What should I expect to feel in my left ear after surgery during recovery?

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)

Recovery time should be 6-8 weeks. I had a complication with a csf leak through a suture and went back in for a week and had a lumbar drain; if that happens expect an extra week after you are discharged on top of the 6-8. I was back to work on light duty 10# and under 3 weeks after my leak. My balance was ok after the leak was fixed. I was very unsteady the first 5 days home but I think I recovered quickly because my ear was full already so my right ear was already compensating for it.

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)

As of 8/25 I am back to full strength and can resume all activities. I can do everything I could do before. My ear at time has pressure but that is just the healing per my doctor.

Notes: a CSF leak is very serious get to the ER as soon as you can. Take it easy during recovery, you don’t want any setbacks.

Schwannoma Case Study #9, Lauren Findlay and the Story of Her Trigeminal Schwannoma

Welcome to Schwannoma Case Study #9!  This one features our dear friend Lauren Findlay and her story of battling a Trigeminal Schwannoma.  (In the most basic definition, Trigeminal Schwannomas affect a major set of nerves running toward the face, jawline, etc) This kind of Schwannoma is one of the less common types, but I seem to get a lot of questions about it - so Lauren was kind enough to want to help others by sharing her story by way of one of our case studies.  We thank Lauren very much for her time and wish her all the best in her recovery! - Neil

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1)  How old were you at the time of your diagnosis?

I was 29 years old, but i first noticed a small lump in my jaw area when I was 25 years old. I had it checked and was advised at the time it was just a swollen gland or excess tissue.

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

No family history. I did work in a Dental Practice from the age of 17-25 working alongside X-ray machines/radiation and there has been a link/research into schwannomas from radiation exposure.  

(*Note from Neil; web MD lists radiation exposure as a possible link to a certain number of Schwannomas - and there are genetic conditions like the more serious condition of Schwannomatosis that predispose a person towards Schwannomas.  Other information sites list the causes of Schwannomas as unknown.  However a sizable number of the members of our group did anecdotally relate some experiences of radiation exposure - though this was an unscientific poll of our group only)

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

I had found a small pea sized lump in my lower left jaw area 4 yrs ago causing me no symptoms or pain and at the time I was advised it was nothing to worry about. In November of last year I woke one morning to swelling around the area, tightness of the area and noticed the small pea sized lump had grown to the size of a grape. I had also started to experience vertigo/dizziness and I had severe migraines building up. I was on a pain killer called Tramadol for the migraines and another for the vertigo but I now forget what this one was called. I went to my Dentist with it being in the jaw and he referred me on to a specialist at the hospital where I had an X-ray taken (not much was seen on the x ray), I then went in for a Biopsy but with the tumour being like a hard capsule they struggled to get a decent sample and as expected the results came back inconclusive. I then had an MRI scan and it was after this that I found out it was either a schwannoma or a neurofibroma (during surgery it was confirmed as a schwannoma).

I then met with the surgeon/specialist who was going to do the removal of the tumour for me. He advised of his experience over the years but did mention he hadn't seen anything quite like this before and did consult with his colleagues on it. But I felt I was in great hands and was extremely comfortable for him to carry out the surgery.  

From being referred to the hospital to being diagnosed and then to having the surgery carried out I was 7 months in total. 

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 was advised of the possibility of nerve damage to my facial nerve. If the schwannoma was inside or entangled in this nerve it would need to be removed and they would take another nerve from my neck that gives feeling to the ear and graft that in its place. This process could take several months to a year to work and could result in my lip at the left hand side "drooping down", and leaving me with no feeling down this side. Even if he didn't have to remove the nerve, I could still have ended up with damage or paralysis to this as nerves are extremely sensitive and stretching and moving of them can cause the same problems. I was to be cut from the top of my ear down to my midline neck in order to give enough access. The prospect of both upset me as I worried my new appearance would upset my 5 year old son but I knew I had to have this removed as the dizzy spells and migraines were unbearable and also, removal was the only way they would be able to 100% confirm it was a benign tumour (in most cases these tend to be!).

I went in for surgery 8am on a Tuesday morning , and was in theatre by 9am, out for 12.15pm in the recovery room. I woke to some pain and was given an injection to ease this aswell as another for the sickness I was feeling (this was either a reaction to the general anaesthetic or the morphine I had been given). The rest of that day is a bit of a blur. But I do remember when I got back to the ward I requested a mirror to have a look at the "damage". I was actually so pleased with the end result. Although the scar down the side of my face was a bit upsetting the surgeon had managed to "lift" the facial nerve and remove the tumour without causing much damage. The stitches were placed inside/under the skin and so they were not visible. I also noticed I had bruising along my forehead and the beginning of a black eye. I'm still unsure if this was down to some sort of clamp they had to use to hold my head in place during surgery or if it was just pressure as they were working below this area.

Eating was difficult for the first while as my jaw was swollen and tender and felt very fragile.

Two weeks on and I look almost back to my usual self again apart from some slight swelling still to go down and the scar down the left hand side of my face. It's healing well and fast though and in no time it should just be a thin line hardly noticeable. 

I still suffer with migraines although not as bad and I am still feeling quite dizzy. I have been advised this is due to them working in and around the inner ear causing me to be off balance. My employment consists of me driving quite a bit and spending periods of time on my own in empty houses/flats so I am still off although if I had a more office based role surrounded by others and with no driving I feel I could be thinking about a return to work soon.

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?

Best advice I could give for this one would be to make a list before you go for your appointment and go through that list one by one with your doctor/surgeon. 

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 am recovering very well 2 weeks after surgery. Although not confident to drive distances etc yet due to the dizzy spells and also the stretching of my stitches down my neck I am up, out and about going for plenty walks/fresh air which I find has helped my mood as being stuck in the house on your own can leave you feeling sorry for yourself.

 My scar is fading fast and swelling is very minimal now.

I had been keeping on top of medication given to me as pain relief from hospital but I am now completely off them and all I take is something every now and again for my migraines and anti sickness tablets for the dizziness. 

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)

Other than driving just now I am able to do everything the same as before. I have no regrets about having my surgery. 

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