Showing posts with label Cervical Schwannoma Recovery. Show all posts
Showing posts with label Cervical Schwannoma Recovery. Show all posts

Friday, June 1, 2018

A Remarkable Story of Hope, Colin MacKenzie Running the London Marathon After Cervical Schwannoma Surgery

Hey everyone!  Today I'm pleased to present to you a story that should give us all hope...the story of our friend Colin MacKenzie and his successful run in the London Marathon, after having had cervical Schwannoma surgery.  I feel like such stories are truly needed, because for some people, Schwannoma pain can make even the most basic things extremely difficult.  For some, just going out to get the mail is an ordeal.  Or taking care of a child.  Or just making it through a shift at work.  However some survivors are people who take the norm and stretch that possibility to the max - and Colin MacKenzie is one of them.  Based in the UK, Colin trained for and completed the London Marathon in 3:41:23, after having had surgery for a cervical Schwannoma.  Colin was kind enough to answer a few questions about this experience, and we thank him for taking the time to do so - and for demonstrating what is possible for athletes and anyone else who has had a Schwannoma.  - Neil

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1). What were your symptoms before your Schwannoma was discovered? How did it affect your running before it was found?

The slow growing nature of Schwannomas meant that my symptoms came on very slowly over a long time. I gave up rowing in 2006 shortly after my daughter was born (but before I noticed any symptoms) and fell out of the routine of exercise. I had a few attempts over the next few years to get fit again but did start to struggle a bit with my feet. The best way to describe it is the feeling you get just before your foot falls asleep, the not quite numb feeling and not quite pins and needles. In some ways it felt a bit like my feet were drunk - I couldn't really rely on them landing correcty and in fact did sprain my ankle when playing around in the park. Over time my legs felt really tired all the time despite not doing any exercise. It is worth saying that I had no pain at all. By the time I went to see my GP I couldn't even run for the bus!
2). When your Schwannoma was located, where was it found? What kind of procedure was performed and was it successful?

I was referred to a neurologist who sent me for a head and neck MRI. He told me he was looking for either compression (eg a tumour of some sort) or inflammation (eg MS or Motor Neuron Disease). It turns out it was a Schwannoma on my spinal cord at C1/C2 (right at the top of my neck). It was surgically removed on 13 June 2012. A follow-up MRI a few months later confirmed it was completely removed and a further MRI in 2017 showed no regrowth. The only side effect I've been left with is a numb patch on the back of my head which corresponds to the specific nerve that was damaged. 3). How long did it take you to train back up to the strength required to run a marathon? What was that process like and how did your body feel after having gone through the experience of having the Schwannoma?

Recovering from the Schwannoma was one thing, recovering from the surgery was another. In the days after the surgery I could feel the feeling returning to my feet quite quickly as my spinal cord decomressed. My neck was very sore and stiff from the surgery though. It took a good 6 months before I had most of my movement back and a year before I felt normal again. August 2013 was the start of my get fit campain. I started on the treadmill and cross trainer before building up slowly to 5km. I was lucky to discover parkrun which is an organisation that puts on weekly free 5km runs in parks all over the world now. This helped with motivation and gradually my times improved. I built up over the next few years and found out I had a place in the 2017 London Marathon in late 2016.
I think the key was taking it slowly and listening to my body. I didn't have any residual symptoms from the Schwannoma, my movement was back to what it was before and it just felt good to be able to run up a flight of stairs again. If I'd been told the day before surgery that the best outcome was that my symptoms wouldn't get any worse I would have leapt at it. But here I was 4 and a half years later starting to train for a marathon.



4). How did you feel during the race? Did you find that it the feelings in your body were greatly different than before the Schwannoma?  

The race was an amazing experience. The atmosphere of the London Marathon is incredible. Crowds line the whole course and there is a constant wall of noise of people shouting your name and encouraging you on to the finish. Comparing how I felt now to before surgery was like chalk and cheese. In the months before surgery I couldn't run at all and even walking was becoming difficult. But if I compare back to my rowing days then there was no difference (apart from the march of time from which none of us are immune!) My training had gone very well. I'd clocked up just over 500 miles in the 16 weeks before race day so I was ready for it. I held back a bit in the beginning and it was only at 15 miles where I caught up to my target pace. Rounding the final corner in front of Buckingham Palace was an emotional moment and crossing the line was real celebration of everything I'd been through to get to this point. 5) Lastly, having gone through this experience, what are some of the key points of advice that you'd like to offer to other runners or athletes trying to train back into shape following a battle with a Schwannoma?

Don't try do too much too soon. Runners I know are notoriously bad at taking time to recover from injury. Listen to your body, and get advice from a qualified medical professional if you have any issues. Join a running club or group. Doing it with people around you is so much easier than trying to go it alone. Enjoy it!

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You can email Colin at: colin.mackenzie@rocketmail.com



Saturday, January 23, 2016

Case Study # 22, Diane Schuler and Her Experience with Cervical Schwanoma

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)


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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Tuesday, September 1, 2015

Case Study # 20, Recovery from Schwannomas at C 7 and at T 8

Hello all!  We are pleased to present for you this case study by an anonymous person who had a Schwannoma at C 7 and another at T8.  This person wanted to offer their story in hopes that it may assist others - and we thank them sincerely for taking the time to write it all down for us.  We hope you find this useful and have a great day! - 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?

I don't know of any.

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

I had two schwannomas.  One was in my right C7 nerve, which is part of the brachial plexus.  It first appeared as a firm lump on the side of my neck, above my clavicle, with no pain.  I was told that it was just a muscle knot.  After about a year, I started feeling pain in the knuckles of my index and middle fingers whenever I tensed my arm muscles with my arm outstretched.  I couldn't do push-ups or chin-ups without pain.  I also experienced a lot of pain while typing as a software developer.  I assumed it was an overuse injury and bought a better mouse and keyboard.  Two years after I discovered the lump, I returned to the doctor because the lump was undeniably larger.  He diagnosed it with an MRI of the neck.

The other tumor was in my right T8 nerve, on the back wall of my chest, approaching my spine.  It measured 10 x 7 x 6 cm!  The neurosurgeon that I saw for the first tumor suspected it when I told him that I had a stripe of numbness along my side.  I had first noticed the numbness seven years earlier.  I had also felt weird sensations all around the right side of my rib cage and abdomen for at least the past fourteen years.  There were random shooting pains, muscle spasms, and muscle soreness.  These sensations did not change over the years.  None of the second tumor's symptoms bothered me much until I knew they were caused by a tumor.

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 both tumors removed, and both surgeries went exactly as planned.  A neurosurgeon removed the neck tumor with a supraclavicular approach.  He used electromyography and other neural monitoring techniques to avoid cutting any functional nerve fibers while he removed the tumor from the nerve.  He also used general anesthesia, because electromyography works best with general anesthesia, and the tumor was too close to the neck for a nerve block.

The second surgery was more complex.  It was scheduled seven weeks after the first surgery to allow time for recovery and more tests.  A thoracic surgeon performed a posterolateral thoracotomy between the sixth and seventh ribs.  This exposed the tumor, and then the thoracic surgeon and neurosurgeon removed it together.  They removed the intercostal nerve with the tumor because it was a minor nerve, and it had already been damaged by the tumor.

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?

I can't think of any good general questions.  One thing that helped me was making a list of questions ahead of time and bringing them to the clinic on a clipboard.  Once, when I was too nervous, the doctor helped me out by taking the clipboard and starting to answer my questions.

Another piece of advice is to consider a second opinion with a neurosurgeon, especially if your treatment would have a less-than-perfect outcome.  For example, see if it is possible to have the whole tumor removed without damage to the associated nerve.

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 feel like I've recovered well.  The radiating pain from the neck tumor disappeared immediately after the tumor was removed.  For the first hour, my arm felt like it was waking up after I had slept on it.  It felt perfect after that.  I left the hospital early the next morning.  Three days after the surgery, I started experiencing every sensation on one side of my forearm and hand as pain.  If something brushed my arm unexpectedly, I'd think I was stung by a bug.  Once I could see that it was something harmless, I was able to ignore the abnormal sensation.  This hypersensitivity didn't really bother me, and it gradually faded over a month or two.  Besides that, I didn't experience anything unusual.  My neck felt swollen, and I felt more tired than usual for the week following surgery.

The second tumor was a different story.  I still don't know why, but I had trouble standing up after the surgery.  The thoracic surgeon said he had never seen that reaction in a patient before.  Every time I stood, bad sensations would increase until I lay down again.  I would feel dizzy, lightheaded, disoriented, and nauseous and get a headache.  I also experienced ear effects; normal sounds seemed to pulse in intensity with each step I took, and I felt like my head was underwater.  My thoughts were fuzzy, and I had trouble concentrating.  I also got a lot of stomachaches.  I vomited many times before I realized that my symptoms were linked to posture.  I left the hospital on the fifth day, as expected.  Then I spent most of my time lying on the couch, only getting up for a few minutes at a time.  My symptoms didn't improve for a week.  Then a nurse suggested that I try sucking in my abdominal muscles.  Sucking in my gut or wearing an abdominal strap allowed me to stand for much longer without symptoms.  I finally started to improve.  At one month after surgery, I only had to lie down for about an hour or two spread throughout the day, without even sucking in my gut.  At two months, I could remain upright all day.

A constant, low-grade headache started at five weeks after surgery.  I was worried when the headache showed no sign of going away.  However, it started improving after a few months and then disappeared at nine and a half months after surgery.

I didn't experience very much pain after the chest surgery, only an expanded area of numbness.  That numbness unexpectedly turned to pain on the seventeenth day.  The pain lasted for four days before numbness returned.  I haven't felt any of the weird, neuropathic sensations in my side that I had before surgery.

Other than difficulty standing and the headache, my recovery from chest surgery went well.  Breathing is much easier without the tumor, especially deep breathing.  At one year after surgery, the only remaining problem is minor loss of appetite.

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 able to do everything I did before.  I've started running and doing push-ups again, and I haven't lost any range of motion.  My arm feels completely normal after the neck surgery.  Chronic pain can be a problem after chest surgery, but I haven't experienced any.
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*Bonus content...the person who did this case study wrote a longer, more detailed account of their story and if you wish to read it, here is the link:  https://schwannomacasestudy.wordpress.com/