brain/spinal tumor symptoms?

By amykate
Posted September 18, 2008 at 1:38 pm · 21 replies
In Finding emotional support

I was diagnosed with VHL last October after discovering that I had a rather large endolymphatic sac tumor in my left ear. I had that removed in January. I currently have a tumor in my cerebellum and a tumor on my C1 vertebrae (which has a cyst). I was not experiencing any symptoms from either of these until shortly after I became pregnant with my third child. I am now 18 weeks pregnant. I have constant numbness and tingling in both my left hand and foot with the numbness traveling up through the left side of my body. This numbness is very mild, however the tingling in my left hand drives me crazy. I am waiting for my scans from NIH to get to a neurologist out here to get checked out. My primary just wanted me to go straight there instead of to her. I tend to suffer from major anxiety since being diagnosed, and I was just wondering if anyone else with these types of hemangioblastomas has experienced anything like this. Thanks!

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By Franne
Posted September 18, 2008 at 2:36 pm

I was just diagnosised in the spring, accidently actually. Anyway, I'm still learning, but I haven't had that urge to become overwhelmed with all VHL involves. I don't know if I'm just used to dealing with all my issues over the years that I don't really think about the overall picture or if I'm just overwhelmed and stressed out with life itself. I guess I should be more proactive. I've had 2 hemangioblastomas in the cerebellum. I also had a tumor removed from my ear last August and I have a tumor in my lung. What is interesting is that I have had tingling in both my arms for about a year now. I've mentioned to my regular doctor, but she just blew it off. I've never thought of it being related to everything else going on with me. Is it? We seem to have similar paths. I'll let you know if I find out anything.

Franne

By jdurham
Posted September 19, 2008 at 7:13 am

Hi,
I was diagnosed with VHL when I was 13. For several months I was throwing up every day, lost 20 lbs and had severe headaches. Fortunately, I was sent to Duke where they removed a hemangioblastoma from my brain. Afterward, I was lucky to not have any symptoms or issues pertaining to VHL for another 11 years. Last year before I turned 25 my right leg from the knee down started tingling and and feeling numb. I dealt with it for several months and finally had another MRI which revealed extensive edema surrounding one of the tumors on my T-spine. Ergo, I headed back to Duke this July and met with the same neurosurgeon that removed my brain tumor, at which point I was told that it was imperative to remove the tumor right away or I might be paralyzed from the waist down within the next year (the tumor was almost the width of my spine at this point and pressing on the nerves surrounding it). Therefore, I had surgery in July and it was a success. I am still recovering but most of the tingling in my right leg has subsided. I just wanted to let you know that you are not alone in the symptoms that you are experiencing. If you have any questions or need anything please don't hesitate to give me a shout. Take care.
Jessica

By amykate
Posted September 19, 2008 at 12:05 pm

Thanks Franne and Jessica! I appreciate what you both had to say. I am anxious as I wait to get appointment. My symptoms have been going on since July, but think that I was in denial about what it could possibly be! It is so hard sometimes to look online to find symtpoms of certain tumors, sometimes you just don't find anything helpful. However I did find an article written on these types of tumors and one of the symptoms listed was parasthesias, which when I researched that numbess and tingling was part of the definition. I wish you both well in your fights against this disease and in your recovery, Jessica!
~Amy

By joyceg98
Posted September 24, 2008 at 4:26 pm

Hi, there, AmyKate. It sounds like there are two things happening, and I'm glad you are in touch with NIH to get some advice there.

(1) you have a spinal tumor which is causing tingling.
(2) you are pregnant.

Be sure to read the section on VHL and Pregnancy in the VHL Handbook http://vhl.org/handbook

One of the things we talk about there is the fact that during pregnancy your blood volume doubles. This is normal, but it does result in making hemangioblastomas larger, at least for the duration of the pregnancy. We have heard reports from some women that the symptoms got worse during the pregnancy, but then got better after the baby was born and the blood volume went back to normal. You will need to talk with your doctors about what this might mean for you.

Best wishes!
Joyce

By Oree
Posted September 24, 2008 at 9:40 pm

Hello AmyKate,

I had to join and reply to you because in 1986 I was diagnosed with a cyst and tumor in my cervical spine (hemangioblastoma) which the doctor called VHL. I had surgury in 1998 that reduced the cyst & removed the tumor, but over the years my left shoulder, arm, and hand have gone numb and the numbness in my feet has progressed to where I can't drive a car very well. I get these strange electric-type jolts through my left arm occasionally but I can live with it.
Thanks for sharing your story. I was wondering too if anybody else had an experience similar to mine. Many blessings on you as you seek out the help you need.

By amykate
Posted October 3, 2008 at 12:40 am

Thanks Joyce and Oree! It was nice to read what you both had to say before going to the neurologist. Oree, our symptoms are very similar, thank you for joining to tell me about that. Basically, according to my previous scans taken only last May, the cyst is in the perfect location to cause these symptoms according to my neurologist, however for now we are simply going to keep an eye on me considering that I am pregnant and the MRI and the injections that go along with an MRI could not be good for the baby. If things get worse, we will still do an MRI to make sure that nothing gets too bad. For right now, I am going to hope and pray that things stabilize and get better after I deliver. I may have to hold my breath until February when my baby is due. Thanks Again!

By JennyBlue
Posted October 3, 2008 at 11:20 am

I had multiple MRI's without contrast while pg. They are not as "good" as the contrast, but they can keep tabs on tumor growth. Just be sure that you mention any changes in symptoms to all of your doctors. I had tumors that rapidly grew and developed cysts while pg. They had to be treated to save the lives of my unborn twins, and my quality of life. Feel free to read any/all my posts. My tumors were in the T and L spine, but caused a lot of concern. You are welcome to ask me anything related to my case. Best of luck to you and baby. you are both in my prayers.

By amykate
Posted October 3, 2008 at 7:47 pm

My goodness, Jennyblue, I am sorry that you had to go through that in your pregnancy, I am sure that was hard, but good to know that everything in the end was okay? Thank you for letting me know about the MRI without contrast, I will ask for that if need be in the future. I look forward to reading your posts. Thank you for your offer to answer questions, this is very scary! It is good to have someone who was there!! I am so thankful for this website and the VHL handbook. I would feel so unaware of the possibilities without it. My neurologist said he had no idea why these would be acting up due to my pregnancy...all of this VHL stuff is so rare. I am glad that I know differently. Thank you also for your prayers.

By MELANIE_PUDWILL
Posted October 3, 2008 at 11:08 pm

I have had 2 babies and two brain surgeries because of pregnancy. In my case my doctors are positive that pregnancy caused tumors and cysts to grow in the cerebellum. After I had my girls by c-section I had brain surgeries after each baby. Yes, I have had 2 brain surgeries. My surgeon is great in Bismarck North Dakota. We are not a huge population but have been blessed with a wonderful surgeon. In the hand out it says there is no proof pregancy causes tumors to grow. What I have learned and doctors believe that in my case it did. This disease you have to look at everyone indvidually. Mayo clinic has talked about publishing my materials but I haven't heard anything lately. Now that I am not pregant things are stable again. I was stable with everything for 2 1/2 years before I got pregnant with my second baby. We did my first MRI when I was pregnant when I was 5 months along. I had dramatic growth in 5 months. We continued MRI's because how fast they were growing every 2 to 4 weeks. I was lucky and we were able to hold off until taking my daughter when I was 37 1/2 weeks. Six days later I was rushed into emergency brain surgery. My symptoms came real fast.

It has been 8 months since my surgery and a few weeks ago I ran my first 1/2 marathon. This disease is a pain but don't let it stop you from living and following your dreams is my advice. Take the time to take care of yourself and than move on because time doesn't slow down. My 4 year old is proof of that to me!

If anyone is ever looking for a great surgeon I would recommend Dr. Van Norman in Bismarck.

By amykate
Posted October 4, 2008 at 1:53 pm

Thanks Melanie,

It is nice to read how life goes on after all of this. Congrats on your marathon! That is awesome! I am going to talk to one more neurosurgeon who is very familiar with VHL to see what he thinks I should do concerning this. It is hard not knowing what the next day will bring, especially since things seem to be progessing!

By trvl1wrld
Posted October 5, 2008 at 7:08 pm

Hello,
I have similar tingles etc, down my left arm and leg and continue to have them after my spinal surgery (C-1). What I am responding to is the pregnancy part of your question. I am a bit older, but was on estrogen therapy. My neurosurgeon told me to get off all hormones therapy because it has been shown to affect the VHL types of tumor growth. I can't help but think this has something to do with your spikes during pregnancy and not the actual pregnancy part being the cause of activity but actually the hormone influx during that time. Makes sense to me anyway... My best prayers and wishes to you and your soon to be newborn!

By amykate
Posted October 7, 2008 at 3:35 pm

It is good to remember that hormones can play a role...Thanks for telling me what your neuroseurgon said! Thank you also for your prayers, trvl1wrld! For those of you who had rapid growth during your pregnancy, if you don't mind my asking, how fast did your symtoms appear? Mine were suttle and slower at first, but now that I am getting bigger are progressing faster. I am still being told not to worry too much, because this could just be something related to my pregnancy, and my spine shape changing due to the softening of the musles, but it just seems like that would be a weird coincidence to me. Thanks everyone!

By Kar
Posted October 15, 2008 at 9:59 am

hello. I have cysts in my cevrical region of my spinal cord.I have similar symptoms in my hands and left foot.
can you tell me who is the best neurosurgeon in NIH/NINDS in VHL

By amykate
Posted October 15, 2008 at 6:45 pm

The only doctor that I have met is Dr. Lonser, chief of neurosurgery. He has done a lot of the research and surgeries with VHL/hemangioblastomas. I have never had a surgery there, but I have heard that they are good.

By joyceg98
Posted October 17, 2008 at 12:32 pm

Since 1993 we have had lots of questions about pregnancy and VHL. There are LOTS of stories about people having tumors during pregnancy. The challenge has been answering this key question:
- did that tumor arise BECAUSE of the pregnancy?
- or did that tumor arise because it was going to anyway and you just happened to be pregnant?

Obviously there is no "double-blind" study that they could design that would give us a clear answer to that question. Your child-bearing years are the time in your life that you are most likely to get new tumor growth (15-40 is a hot spot for both men and women).

AND there are factors at work during a pregnancy that can definitely spur tumor growth, or cause a tumor to inflate at least temporarily, both of which can cause an increase in symptoms.

So what we put in the Handbook is intended to help you and your doctors watch out for things that might crop up during pregnancy, and help guard both you and your baby.

The "tingles" could be due to a temporary increase in blood volume during pregnancy. Tingles are not a reason to operate, but they are an important warning sign that something in that region needs to be monitored. Hopefully the symptoms will get better after the baby is born. Perhaps a C-section would be better than pushing? the anesthesiologist should know about this before any spinal anesthesia (it's usually not an issue, but be sure to communicate).

The most important thing is COMMUNICATION -- make sure all the members of your health care team know each other's numbers and understand the issues that are known to be there, so that if something gets worse they can swing into appropriate action and take care of you both. Too much information is better than too little.

Pregnancy is a nervous time for everyone, so part of the anxiety goes with that package. And part of it is of course this package of new questions and unknowns that you are dealing with on top of the pregnancy. You're going a good job gathering information and working with your doctors -- keep up the good work! We're here for you.

All the best,
Joyce

By amykate
Posted October 18, 2008 at 3:06 pm

Thanks so much, Joyce. It turns out that I did have an MRI this past Wednesday, and I am having surgery on Monday. I guess the doctors are surprised that I am doing as well as I am after seeing my scans. I am not sure if it is due to pregnancy or just a fast growing cyst, but the cyst is 10x bigger now than it was in May, but the tumor has not appeared to grow. It is on my C1 so this is scary, but I feel good with my surgeon (a spinal specialist who has removed hemangioblastomas before) and I am at a great hospital to be able to monitor the baby. If I could say that I have learned anything from this is to not ignore symptoms! Thank you so much everyone for your responses to my post. Knowing that others have gone through this during pregnancy has helped me not feel so confused. Although, I would never discourage anyone from getting pregnant. Before this, I have had two very healthy, uneventful pregnancies!

By joyceg98
Posted October 18, 2008 at 4:33 pm

Cysts can grow very quickly, pregnancy or no. That's the nature of a cyst. I know a number of women who have had cysts drained to manage them through their pregnancies, then had surgery for the tumor after the baby is born.

The cyst will continue to re-fill until the tumor is gone, but something they can put a drain in it to keep it emptying and keep your symptoms down until it is safer to operate.

Best wishes,
Joyce

By joyceg98
Posted October 18, 2008 at 4:34 pm

I meant to say ... someTIMES they can put a drain in it to keep it emptying and keep your symptoms down until it is safer to operate.

Best wishes,
Joyce

By trvl1wrld
Posted October 19, 2008 at 12:08 am

Best wishes for your surgery. May God keep you and your baby and all your family in his loving protection. I'll be praying for a wonderful result.

By amykate
Posted October 19, 2008 at 2:40 am

Thank you so much, TVRL1WRLD, we so much appreciate your prayers right now!

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