New to the world of spinal cord tumors

[susan]

Hi, I am new to this group. I started 2008 with a bang when I found I had a "cystic lesion" at C2 on January 3rd (I waited until the holidays were over to have the MRI).
I had surgery on Jan 22. I had a small intramedullary hemangioblastoma with 2 large cysts that had turned my spinal cord into a spinal ribbon. When I saw the films I was like "where's my spinal cord?"
I think I was very blessed in my outcome, I didn't need to go to rehab, I have mild motor problems and moderate pain and paresthsias in my right head, neck, arm & hand. I still feel a little shell shocked. I am having trouble fitting this into my otherwise healthy history.
I am a nurse a large medical center, so I think that was an advantage in diagnosis and treatment. I feel like I had the very best care possible. My surgeon is outstanding, great surgical skills and great bedside manner. However, even as a nurse at a referral center, I knew nothing about spinal cord tumors and it appears most of my colleagues don't either!
I am working part-time currently, limited mostly by neck pain. I have trouble holding my head up for long periods of time. When my neck pain gets worse, I also have muscle spasms and all my symptoms get worse.
My bosses have been great, but I have had co-workers sort of make me feel like a slacker (I usually only call off at the most 1-2 days a year, I've never been ill this long before). Then I start to feel like maybe I am a big baby. This whole thing is making me nuts (or maybe it is the Neurontin!)
I finally found this website after a ton of searches, I must have Googled hemangioblastoma and spinal cord tumor a million times. Reading everyones' stories has helped. I don't feel so alone. I'm thinking of writing my story for the "People Page" The hemangioblastomas aren't representin' there.
Thanks for listening. I look forward to future discussions.

[cindylee]

Susan!!! Welcome to our world here! Wow, you have had a most excellant outcome to your surgery. And your recovery is amazing. Don't worry about being a slacker at work. I'm sure if those folks had even an inkling of a tumor they would not be doing half as well as you. You may look healthy and well on the outside, but as you know you still have lots more healing to do on the inside. I am in awe of your attitude and get-up-and go. I think you have earned the right to ease up a little bit. I pushed myself right after my surgery because I had to. Well, here it is two years later and I am still in my tired phase. I think had I took a little better care of me then, I would be better able to battle stronger now. One of the common threads I read in our forum is the fatigue even years later. I think our bodies are just trying to adjust and compensate and try to get to as normal as they can. This takes a lot of energy. Maybe that's why we tire so easily. Be gentle with yourself and ignore the nay-sayers at work. And your're in great company here. Cindy

[susan]

I don't remember being told about the long term pain and numbness prior to surgery. I was told the first hurdle would be getting me off the ventilator because my tumor was so high. I Know from working with trauma patients that C2 spinal cord injuries were unable to breath on their own and were ventilator dependent. I am a discharge planner and I had visions of myself in a nursing home on a vent. I am grateful that that didn't happen to me.
I was told that the incision on the back of my neck was one of the most painful and that they had trouble getting patients to go home after surgery because they were in so much pain. That wasn't a problem for me, I know the insurance guidelines and I knew when I was ready to be discharged.
I was also told I might have problems with my right arm and leg temporarily, I did, but I could walk safely, so I could be discharged to home from the hospital. The major problems resolved in the first month.
I was in an incredible amount of pain post-op that lasted about 2 weeks. I didn't realize that at 4 months I would still be symptomatic.
I searched and searched the web looking for articles about recovery from spinal cord tumor surgery, but really didn't find anything useful until I found this site. We should make an easy to follow guide of our experiences by level of tumor. I think that would have been helpful for me. I really had no idea of the longer term recovery.
The only time I have cried in front of my surgeon was on my 3rd post-op visit a month ago when I told him about my current issues. He reminded me that I had a tumor in a "high priced piece of real estate". He said to me "you were on the verge of being a C2 quad on a vent" that was the first time he was that blunt. It really did slap me back to reality.
I think you are right that the fact that we don't always look sick on the outside is deceiving. I told my surgeon I was going to have my pre-op MRI image put on a T shirt to remind the less sensitive people around me where I started from.
The day I returned to work 2 months after surgery, one of my coworkers said to me "you know it's been hell here for the last 2 months", like I was on an extended tropical cruise! I said "It was hell for me too and do you know what? I would have much rather been at work". As I was leaving at noon one day, another person said "It must be nice". I said "Believe me you wouldn't want to go through what I did to get to leave early".
I mean these are nurses and physician assistants. Do I just work with a bunch of particularly insensitive people? I don't get it.
I would never wish this on anyone, but I sometimes do wish they could feel like I do for one day, or they could have felt they way I felt waiting for surgery, fearful that I would never walk or breathe on my own again.
I try to use my life experience to make me a better person and a better nurse. I hope and pray that I am never that insensitive to another person or patient. The thoughtless comments have made me feel worse than I already do.
I think part of the problem is that aside from the day of my first MRI, I haven't been able to let myself cry. My sister, who lives in Germany, was home for a visit at that time, We had a HUGE cry together. After that, if I started to cry I was told "stop that, you are going to be OK". No one would let me cry. That's why I think I have PTSD. I have been plugging ahead, pushing my feelings down. Actually I am crying little now, but I think it is a good thing.

[cindylee]

Susan I just think you work with a few insensitive folks. And I found that a lot of the nurses and PCA's I came across in these past 4 years are just worn out from all they have to deal with. A lot of them were very much selfish and angry. I think they forgot why they were in those jobs in the first place. A lot of them were de-sensitized to all that was going on around them. I know that you have to be detached at times, but some of these folks were just downright rude. I would hate to be their patient. Most people think their lives are hard. They have family pressures, work pressures, money doesn't go as far as it once did. So they get ornery. I know firsthand it isn't easy taking care of someone. Maybe you just work with a bunch of mean people, and I was trying to give them the benefit of the doubt. I have learned when I hear remarks that cut my heart, to just give a closed mouth smile and walk away. You know that smile that could be a smirk or a smile. I rarely answer anyone anymore. I used to really push myself to do extra things at work because I felt I was not pulling my weight. And I would almost apologize for not being as tough as I once was. No more. I now do only what I can. If that is not good enough for some people, so be it. I used to go home after a day at work and not be able to even eat dinner, I was so tired from trying to be what was expected of me. There will be insensitive people everywhere. After awhile, you do learn to ignore them. Susan, with your experiences, I think you will become one of the better nurses. And I think your patients will be more co-operative and appreciative from being around you. Don't let the gripers get to you. Cindy

[bethann]

Susan,

I too had a hemangioblastoma! There are not many of us on here. I have never written anything for the people page....thought about it but never did.

I also have had the feeling that my head is to heavy for my neck to hold up. I still (ever since before surgery) go to PT. At this point I go every other week and have deep tissue massage. I have issues with my right upper torso. Spasms in my right chest area. Every time I go for PT Dave my therapist works on loosening up my mussels (they are always tight again two weeks later but I think it does help some). I have just recently started going to a pain clinic. I have had cervical epidural. They have helped some with the pain. I know despite the pain I have I am lucky with my surgical out come. I also have a syrinx at the top and bottom of where my tumor was ( had it before surgery and it is slightly smaller than it was before).

If you would like you can email me at [e-mail] or find me on skype I am Beth Hunt in Holland Michigan.

Beth

[susan]

Beth,
thank you so much for responding. I guess we are two of the few lucky winners of the hemangioblastoma lottery (I don't remember buying a ticket!)
Here's the really sad thing about PT. I only get 25 visits per condition & I've already used 20. Isn't that crazy, whether it is a sore back or a stroke, you get 25 visits.
I was going to my local site in the suburbs and I think I should have gone to the PT dept where I work. We have a spinal cord injury program there and our surgery is kind of a controlled spinal cord injury. I am waiting to here from my rehab doc that saw me in the hospital. She was running my issues past the spinal cord specialist to see if he thinks it's worth while for me to see him.
My local PT guy said to me he didn't know what else to do to strengthen my neck. I wish he had suggested spinal cord rehab instead of wasting my visits.
I will email you too. How else would I ever found another C spine hemangioblastoma patient to talk to except on this site? It's great.

[bethann]

Susan,

It was great getting to know you! I am sure you will have a great deal of changes yet. Like I said I wish I would have kept a diary of how I felt each day. I think that would be a great idea then you would know when something goes away! Take care and feel free to call me anytime I love to talk!

Beth

[susan]

Many thanks to everyone who started, maintains & participates on this website. I just had a long phone conversation with Beth. I don't think I would otherwise ever spoken to someone with a spinal cord tumor let alone a hemangioblastoma.
Beth's words of wisdom from experience were very comforting.
Readings everyone old posts and current responses has been an education.
Thanks Cindylee for your words of encouragement too! Thanks for responding and validating my feelings.
I feel a little less alone.
Susan

[Joel]

Susan:
My surgery was c2-c4, so I know of what you speak. You must concentrate on you now--PT, the right drug regimen, and keeping up with tests. Some of what you have will be permanent, some not. Getting used to people's insensitivities is very tough; most of us look better on the outside than what we feel on the inside. I've just learned to ignore all that. Some people will just not get it--ever. You are lucky. Remind yourself that once in a while.
Smile. Try not to worry about things.
Joel

[DavidUK]

I am in the same boat, having had an ependymoma between C3 and C6 removed in April this year, although the cyst wall could not be resected and instead was 'marsupialised'-currently 2/3 way through a 50GY six-week radiotherapy course. Suffering from disasaethia in left leg and unimproved pain in rt. arm and hand - the original symptoms. Walking is fine, balance still a but wobbly especially from a kneeling position-when lighting a fire, for example.
Brilliant surgery, walked out of hospital after 8 days.
My main problem is that I don't know who to go to for help now, other than my charming physiotherapists.