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Ten Months out

plischeske
1 Recommendation

On December 17th, 2007 I underwent surgery at UCSF in which they removed a pretty big hemangiomablastoma from my cerrabellum. Another Surgeon had tried to remove it back in 1994, but was worried about how close it was to my Brain Stem so he left it in and treated it with the Gamma Knife. For whatever reason 12 years later this tumor decided to grow again and it was decided it better come out. The surgery was successful, but no one prepared me for what was to follow. I was in Rehab for a month, and now almost ten months out I am still only able to walk with a walker, have a brace on my left foot due to ataxia, have blurry vision, and am still going to P.T. once a week.

I have had other surgeries and have pretty much been back to myself after 6 weeks. There are days I wonder if I am ever going to be back to myself at all. I know from years of dealing with this disease that everyone is different, but has anyone been anywhere close to where I am? For the most part I am staying tough, working hard and figuring in enough time things will get better. If anyone has any words of wisedom I could sure use them.

Explore topics in this discussion:

Exercise MRSA Surgery Brain tumors Sleep apnea Ataxia Hemangioblastoma Pain Edema Depression

14 replies

Jankster

My dear... We are about 10 months out also. I say we, meaning my husband was the one with the hemangio on the brainstem. It was the size of a half dollar. Our surgeon said everything should go well. They got the tumor alright, but my husband is not the same. He spent 4 months due to complications,(mostly breathing issues) also MRSA. We spent a month in the rehab unit there before returning home. He still has a tracheostomy and on oxygen. It has taken months of therapy PT and OT to get him to where he is now. He can walk around the house on his own, outside I have to hold his hand. The ataxia is bad, but the brace for the right foot has been off quite some time now. Why are you only going to therapy once a wk? YOU NEED MORE THERAPY! It has done miracles for my husband. He too had double vision ever since the surgery. Its ironic, he didnt have any symptoms before the surgery accept the hiccups, and no everything he should of had before he has not. They kept telling us the visual field should come back, but it never did so I took him to an eye doc, they discovered astigmatism, and corrected his vision almost 90%. You might go to the eye doc if you haven't . There is a major nerve in the brainstem that deals with the double/blurry vision and the surgeon might have nicked it as in our case im almost sure of. It is a long recovery we are told. I hope I have been some help to you for support. You are not alone. Please write with any ?'s and I will try to help. I am also a nurse which benifits us. Good luck and a speedy recovery. HANG IN THERE!

plischeske

Thank you for your reply. Your husband is very lucky to have you in his life.

I was going to P.T. at least twice a week and just recently cut it back to once a week. I am going to an eye specialist because they are treating a hemangiomablastoma that I have had in my right eye for many years. I was diagnosed with VHL when I was 9 so none of this is new to me, I just wasn't expecting this last go around to be so long and hard. Just out of curiosity how old is your husband? You have inspired me to work even harder on my walking, and getting my brace off my left foot. My balance is so much better, I think I just need to work on my confidence. Take care and thank you again for the support.

Jankster

Im glad that I could help you. Thank you for your kind words. My husband is almost 37 (in Nov). He also has another tumor on the inferior vena cava (the main artery returning blood to the heart) about the size of a tennis ball. No one is in a hurry to remove it because it's supposedly not causing any issues. I disagree, but who am I, and they surgery is very risky from what Im told. 50/50 chance of survival. His vena cava is split so he is able to return blood flow, this is very rare though, most people only have one.
I hope you continue with therapy. I know everyone's case is unique, but I think it will pay off. My husband really has only been gettine therapy for 4 months due to complication while in the hospital so he has come a long way, and so will you if you keep on it, especially with a home program. Why did you cut back on therapy if you don't mind me asking. Take care. Hope this helps

SHAWN1

Jankster & Plischeske
I am not in either one of your positions. I have had only one surgery, back in 1994, to remove a hemangioblastoma from my rt. cerebellum and I recovered in about 6 weeks. I do have a brother, Brian, who has had over 30 surgeries to remove brain tumors or due to complications from vhl. His last surgery was just after christmas in '04. The surgery damaged the brain stem which caused several complications. He spent 2 1/2 years in the hospital before being allowed to come home. Within the last few months he has come off his trache and is making progress. My point is that so many times we thought that we were going to lose him but he never gave up. The hard work will payoff. In the midst of it all, you have to stay positive. I wish you all the best and you are in my prayers.

Jankster

Thank you for your kind words Shawn. Wow, 2 1/2 years in the hospital... I thought 4 months was ruff. Im so sorry that your brother has had to go through all of this. Its nice to know that after that long he was still able to get the trach out. My husband has only had his in for a little over 8 months. We are going back to Denver next month to see the specialist again. Hopefully good news that she will or can help. His vocal cords are fixed together and has a lot of narrowing in the airway, but the trachea itself is fine. I hope they can help. If you don't mind me asking...why did your bro have a trach? Does he have sleep apnea at all. My husband ended up with central apnea because of this. Anyways take care and god bless

SHAWN1

Jankster,
You're welcome. I am not sure if my brother has sleep apnea or not. My understanding for the trach was due to the effects of the surgery as he was not able to breathe on his own. All of his surgeries have dealt with the cerebellum except for 2, one on the spine and one that involved the optic nerve which they had to sevre to remove the tumor, so overtime he has lost much of his mobility functions and overall strength. All of this has probably led to his long recovery. I hope that everything goes well for you and your husband. One of the biggest lessons that I have learned from my brother and sister-in-law is to never give up. Nothing against doctors as they are vital in our care but I can't tell you how many times she was told that her husband would never make it home or that he will never breathe on his own, etc. Her response--"You don't know my Brian, he's a fighter." He is home and he is breathing on his own. I guess what I'm trying to say is that you have to continue to believe and don't let what others tell you change that.

Jankster

My husbands airway collapsed after his surgery, thats why he got the trach. Everytime they tried to remove it no luck. He had so much swelling it was impossible to breath. All the swelling has subsided and things look good now, able to protect the airway. Now just have to take care of the vocal cords and we'll be good. Is your brother or sis-in law on this website?
Yeah, docs (although needed) sometimes don't have the best advice for prognosis. They told my husband he would probably never eat again and that was a joke. Said he wouldn't walk without a walker and that one was really a joke. One thing i've learned is that he is very strong and determined and hates when someone tells him that he will never be able to do something again. Loves to prove em wrong. Thanks for the encouragement. Wish your family the best

SHAWN1

Wonderful! I'm glad to hear that the swelling has gone down and things are moving in the right direction. My brother and sister-in-law are not on the website. It sounds like my brother and your husband are both very strong and determined.
Since I spoke with you last, I went and had a MRI done. It the first one in 8 or so years. I have an appt to meet with a doctor to go over the results. I was able to read the report which shows that I have 2 hemangioblastomas--one in the rt and the other in the left cerbellum. I thought my last surgery was in '94 but it was actually in '93-so I've had a good run. Now I have to wait and see what the doctor says. The issue is that I don't know if the lesions have been there for a year or 5 years. I don't have sypmtons and I feel in great health as I try to exercise on a regular basis.

I guess I'll wait and see what my options are and research it from there.
Take care and best wishes to you and your husband,
Shawn

raekel

shawn

my experience with irradiation of a brainstem tumor resulted in problems like your brother experienced. the late radiation edema from cyberknife surgey left me in skilled nursing for two years. i only came home because i ran out of insurance. i still have on the dreaded trach. how long did your brother have a trach and how did he get it out? thank you, raekel

raekel

hi shawn,

i have re-read your post about your brother;s 2 and one half years in the hospital with a trach and other complications. i was thrilled to learn that his trach was finally removed sometime after he came home. his story gives me hope that i too will have my trach removed. i've had it for just over 2 years and am working on swallow therapy so that sometime i can finally get this removed. there are times that i lose hope about this and i get down. thanks for sharing your inspirational story of hope and perseverance.

best wishes,

raeanne

beccaloo

Hang in there!!

Seriously, stick it out. Yes, you probably do need more than one therapy session a week. And don't skimp on the exercises you should be doing on your own at home. I did and I regret it. It took me that much longer to recover. I know it's hard to get motivated. I KNOW! I'm a horrible procrastinator and I unfortunately inherited my Dad's woe-is-me-why-bother attitude. Not all the time, but enough that looking back I should've done those "stupid" exercises.

You're not the only one: I too was fooled by past experiences. I had a brain stem mass the size of a walnut removed in '94 and was out the hospital and done w/rehab in a month. In '01-'02 I faced more brain surgery and figured it'd be about a month. WRONG. Aside from the fact that this time they found more tumors in other spots (back and kidneys) that needed to be taken care of, yeah, I was no where even close to normal 6 months let alone 1 month later! I'd told my boss and employer that, "Oh yeah, no big deal. 6 months top and I'll be back, good as new!" That was what I honestly expected and no one told me anything different. Well, 4 surgeries and a year and a half later I returned to work for 6 months at a desk job (ohmygodiwassoBORED!). 4 months later I returned to my old job (hallejuliah!) and FAILED MISERABLY! I was exhausted and in constant pain. It was aweful and I eventually had to retire at the ripe old age of 26.

Why do I tell you this? B/c first, every surgery is going to affect you differently. I wish someone had told me that! Second, be prepared for it to go in the complete opposite direction JUST IN CASE! Third, don't give up. It's now 7 yrs later and I'm doing a whole lot better but I'm still not what I was and probably never will be.

About 2 years ago I was in a horrible downward spiral of depression. Classic Depression: Some serious I CAN DO IT days followed by days of uncontrollable sobbing. I hid it well. I had my Brave Face for the world but behind closed doors I was miserable and so was my poor husband. I was just watching the days go by sitting on the couch w/the remote. I've always been overweight but I'd packed on more lbs and could barely make one loop around my local walmart. Out of pure despair I finally gathered my courage and went to the Open House at the YMCA in our neighboring town. It was the BEST decision I'd made in YEARS!!

I joined for 2 reasons: 1) they were the only place w/a pool and I love/loved to swim and 2) they have a scholarship program and I qualified for a SERIOUSLY reduced membership fee. It was actually cheaper to buy the gas to travel 25miles round trip to the Y than it was to travel less than one mile to go to the gym down the block! Even so, it took more courage (I'm kind of resistent to change: lack of self-confidence) and nagging from my husband to get me to finally go but now I can't stay away!

I wish I could go 4x's a week but b/c of $$ I can't. However, I go at least 2x's/week. I just went one day and started walking on the treadmill. (Tried the pool, but I like walking b/c I can watch TV and zone out!) I started out doing 20min. at like 1.5mph and then finally topped out about a month ago at 30min at 2.9mph. About 2 months ago I ended up falling off the treadmill (my own fault!) and had a bit of a setback but I didn't let it stop me! I finished my workout that day and missed only 2 workouts. I'm back trying to get up to that 2.9mph but I do my 30min. and can now walk a mile and a half! Not bad!

I may never reach 3.0mph or be able to run or go further than 1.5 miles, but as long as I watch the treats I've been able to drop those spare lbs and lost a couple more (not much more but that's another complicated separate issue). My sister who hadn't seen me in about a year or so told my parents when she got home at how much more stable I was and how much stronger I was physically and that she was really impressed and surprised at how much better I seemed to be doing. I told my nephew last time I visited that I could only do the flight of stairs once a day. That was about 3 months ago. The other day he asked me, "Auntie Becky, can you do the flight of stairs MORE than once a day yet?"

It's also really helped my emotional state. No matter how junkie I feel, I force myself to go out those 2-3 times a week b/c it really does help my state of mind. Even if it's raining, I got out of the house. My husband can tell when I haven't been to the Y b/c I'm really really grouchy! Like I said, I had to retire and am disabled so while it's still really hard to accept that, I kind of feel like I still have a job. Now my job is to take care of myself and go to the gym and push myself. I've also started making a few friends at the gym. No coffee invites yet, but I've always been an introvert.

I know this is long (classic Rebecca, trust me!) but recovery is long. Don't give up and listen to your therapists. On those "gray days" which EVERYONE has, I wonder where I'd be if I had done those chair exercises the in-home therapist person had given me. I still doubt I'd be headed home for the Boston Marathon, but maybe I'd be in that 3.0mph zone. I can't focus on the "what if's" though. I'm too busy planning for tomorrow. I don't know if anything I've said has helped. I hope so. I wish you the best and please, please don't give up. You'll get there. Be patient with yourself. Just like Rome, you weren't built in a day so give yourself a break, okay?

SHAWN1

raekel,
Thank you for your thoughtfulness in regards to my brother and I wish you the best of luck. We, as a family, have been told several times by doctors that Brian, my brother, won't make it, or he won't breathe on his own again, or he won't this or that, etc. What isn't realized is that my brother is very determined to the point of being stubborn. Once he came home, he was seen by another respiratory specialist and he started to "ween" him off the ventilator. Today he does quite well without the "vent" but he still uses a trache as he can't swallow yet either.

I wish you the best and don't lose hope,
Shawn

gill-05

SHAWN1
your story is an inspiration to us all it shows how determined we can and should be against this disease that has hold of some of us best wishes to your brother.


Best wishes to all

plischeske

Dear beccaloo,

Thank you for your kind words, and your words of encouragement. I have been going to a new P.T. since January of this year, and seem to be progressing much quicker. I am still using a walker, but have set goals for myself and by golly I plan on meeting them. Since my "Ten Months out" post I have had new info from my neurosurgeon that the tumor in my neck at C-6 could be impeding my healing process which makes total sense. I look at it as I had this tumor in my neck before my surgery, and I was walking fine so just because it is there does not change anything except for more research on ways to deal with it.

I am doing well, and like all of this with this disease I have vowed to stay positive even on the bad days. I keep working hard everyday, and figure I am still here for a reason even if that reason isn't totally clear to me right now.

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