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Hemangioma tumors and/or meningeal cysts

roxielf56
0 Recommendations

I have recently been looking to rule out VHL in regard to my diagnosis. I have a hemangioblastoma tumors (retnal) that has been treated with cryotherapy recently. But the tumors found on my spine by my MD is not VHL related she says. Even though hemangioblastomas were not found on my spine, Has anyone had hemangioma tumors or meningeal cysts found on or near their spine? She is telling me not to worry about VHL in the slightest, and as much as I would like to believe her, I thought I would just throw this info out there to see if anyone else has had problems with these types tumors that may have been positivly diagnosed with VHL? I do believe I am going to go against my MD's advice and seek a Neurologists/surgeon opinion on this. I am currently trying to get my referral to the VHL specialist in KC KS. Any one with any info on these types tumors/cysts?

Explore topics in this discussion:

Retinal detachment Surgery Hemangioma Common cold Hemangioblastoma Lotrel Pain Sutent

21 replies

joyceg98

It's your "MD" (general practitioner?) who is telling you n ot to worry about cysts on your spine? On what basis is she making that declaration?

Yes, it would be a good idea to check with a neurosurgeon, especially one with some experience with VHL. If you can't find that specifically, look for the best VASCULAR neurosurgeon you can find, and ask that they do a differential diagnosis for hemangioblastoma or cyst associated with VHL. Tell them that your GP said not to worry, but that since it's your body you would prefer a more authoritative opinion and would they please help.

That is a perfectly reasonable inquiry. It's your body, and you have a right to know. The group at University of Kansas is great.

The other thing you might want to do (at the same time) would be to meet with a genetics professional and ask about DNA testing for VHL. They will help you go through your family history to see if there are other things in the family health tree that might point to VHL or some other syndrome. You might want to pick up our Family Health Tree publication from the internet at http://vhl.org/power -- look at the bottom of the page.

Best wishes,
Joyce

roxielf56

Joyce, yes my Dr is a general practitioner, she says she is making this assumption because the radiologist says it isn't hemangioblastomas, she says he said they are just hemangiomas. And that these are not VHL tumors. My MD did say that after seeing my opthomologist on thursday that if I still wanted to get a referral she would give me one if I insisted. And after talking to my family, I do. We will ask Dr Ania Pollack at the KU Med Center in KC KS about the DNA testing and who she would recomend. I do have a grandmother that did die of renal failure in the 1960's. I have no more information after that, they called it Brights disease then.....I do know that she had horrindious headaches prior to death. I am not sure if they ever did check her brain for any kinds of tumors..... No one else that we can track have had any information we can use to get a diagnosis. Keep in touch with me and I will let you know what unfolds with this. Thank you so much for your support!

joyceg98

I see where she is coming from, but the evidence she cites is not sufficient to make such a definitive statement. It is nearly impossible to differentiate a "hemangioma" and a "hemangioblastoma" on a scan. The distinction is extremely subtle and would be made by a pathologist once it's under the microscope. Besides, it's nearly academic in the spinal cord, and the terms are often used interchangeably by clinicians. So I would not rely on that wording difference.

You are right to pursue this.

Cheers,
Joyce

dizzybee

Roxie -- same here told i have a T10 hemangioma on the vertebra, not on the spinal cord --- "oh don't worry about it, it's nothing" . But when you google hemangioma what does it say TUMOR, duh! From what've read they can 'eat' your bone and can cause pain (which I do have).

good luck!! the folks on here are great for info and will help you any way they can!!

roxielf56

From what I am experiencing so far the pain is minimal. My tumors are supposed to be small. If it weren't for the retnal tumors I probably wouldnt have found them even now. I have an appointment to see the best we have in KC Ks soon and will find out what she has to say about them. Thanks for responding to my discussion.

dotdot

Roxie,
I am interested to hear your results. There are hemangiomas in the L2 and L5 of my lumbar spine. Also, I am having problems with my blood pressure spiking and several other things. Currently, I am seeing five doctors so with the help VHL I will go to Mayo Clinic in December for three days of testing to help hopefully rule out VHL.

roxielf56

As of now I don't have the location on where my tumors are. I guess I am not as informed as I should be. I am just overwhelmed with all of this right now. I too have blood pressure problems and tumors on my left eye. I had a cryo proceedure about three weeks ago and am still having some disturbances in my sight pattern. Today I just noticed the the dark holes I have been seeing in my sight pattern have started having bright light centers in them. I have called my eye specialist but so far no answer back on if this is something that needs attention. Thanks for the interest in my situation. I will certainly post my results once I get some answers. Good luck on your visit to the Mayo Clinic. I like you am hoping for a no VHL diagnosis.

dotdot

Roxie,
I went to the eye doctor because on my brain MRI it was showing a small developmental venous anomaly in the right occipital lobe. The eye doctor could see any problems from his end (which is good). The occipital lobe has to do with vision. My eyesight is very bad, but he is able to get me at 20/20 with lenses.

dotdot

Roxie,
I forgot to tell you that I obtained my medical records because I was hospitalized two months ago. I needed them to carry to another doctor. I was shocked at all of the VHL terminology that I recognized, but the radiologist referred to them as "of no significance".

marie3

Roxie,

My vhl tumors are in my eye and spine. The tumors in my spine are very, very tiny. I show minimal symptoms of VHL. DNA testing showed a positive mutation in the VHL gene. My family has a history of migraine headaches also. If you did get DNA testing, and IF it was positive (I hope it isn't), I would be very curious where the mutation is in your gene-line. We show similar symptoms. It would be interesting to compare.

Sincerely,
Marie

roxielf56

Ok Marie, they are telling me the tumors on my spine are very tiny as well. She is telling me they are not hemangioma blastomas though...blood type tumors. Mine they are saying are attached to my bone, not my nerve. My MD is telling me it can't be VHL however I have told her I want a second opinion. I have not had DNA testing, my Dr was unaware until I told her about DNA testing that there was even a test that you could take to find out a positive or negitive dianosis. She told me she could give me one but the insurance company wouldn't pay for it. I have decided to wait till I can talk to Dr Pollack in Kansas City before I ask about one. Dr Pollack is supposed to be the best in Kansas. Actually, the only one I could find in Kansas. As I get more info I will post.

joyceg98

The team at the University of Kansas is excellent. They are one of our clinical care centers. Contact Debra Collins,

Kansas: University of Kansas Medical Center, Kansas City, KS. Debra L. Collins, M.S., Genetics, Tel: +1 (913) 588-6022 option 5; E-mail: dcollins@kumc.edu

Best wishes,
Joyce

roxielf56

This is to all whom replied to my post. I made it to the specialist in KC Ks on friday and was told the same thing my MD told me. That because I only had two of the reqired three symtoms of VHL that I am not a candidate for DNA testing. She told me that because I didn't have a first degree family memeber with VHL or VHL symptoms that I most likely didn't have the disease. I am to watch the tumors on my back, and that they will drain them as needed to relieve pain. The past year has been exhausting for me as well as for my family, trying jump through hoops to get the insurance to pay what they did. Having to pay Drs offices $25 to just fill out a form for such. I will be quite sometime trying to satisfy the medical agencies that did the testing on me. My insurance paid only 80 percent. I know I should thank God for having insurance, but will be paying for this for many years to come.
I see on this forum where insurance companies deny deny deny their customers, or potential customers. I hope and I pray that while we have many things to fix in our society, insurance and medical will be one of them. This is a runaway horse. I hope some time soon someone will grab those reins and pull them in so the common working, retired or disabled person can afford to be treated for life threatening ailments, or the common cold of flu, without being worked over for not having the money or insurance for prime care. Thank you for allowing my rant this morning. God bless you all for the kind words of encouragement while I was going through my period of not knowing my diagnosis. God bless you all!

dotdot

Roxie,
I have been following your post and I am surprised about having to have three symptoms of VHL in order to be a canidate for DNA testing. I had DNA testing without any symptoms but because I did not have any blood from a family member that had VHL the results came back negative. I'm headed to Mayo Clinic on Monday and we'll see what happens. My MRI is showing two hemiogiomas on the L2 and L5. I also,
have a lot of other problems. I Will let you know the results.

roxielf56

Thank you Dot. Good luck and let me know what the results are. I will be thinking about you!

pupa

I have vhl since the age of 12. I am blind in my right eye because of retinal detachment. My left eye had cryo about three years ago and now the tumors are acti( I am now 20 years old)
ve the dr, did laser and since my vision has decreased and now the next move is cyro I am scared because that is how the right eye was treated. Also I have had brain and two spine surgeries, It seems just when I have a break these creepy tumors act up again. I was weight lifting and my mom thinks that is why the tumors grew so fast After a year I went in for another spine surgery. I am scheduled to go to the NIH for treatment I thought I would be part of a clinical study with sutent but I do not qualify,I have some small; tumors in the spine and brain area. Do you think sutent or cryo is best for me now also does health insurance supply sutent?

pupa

I wish you much success, Have you considered natural heeling. Does anyone suggest?

roxielf56

Pupa,
I have had the cryo and it did help my left eye with the retnal tumors (so far anyway). Because you did loose the sight in your right eye I can see why you are hesitant to go that route. I have never taken the Sutent for any of my treatments, therefore I am not qualified to give an opinion on it. I have a job where I am lifting heavy objects and have wondered if that could have an effect on my condition from time to time but have never been told by a Dr that it is true.
I am not sure if health insurance will pay for sutent as I have never taken it. The best thing would be to call them and inquire if they will pay for it to be taken as an alternative treatment.
Good luck Pupa in your treatment. My thoughts and hopes are with you. Please keep me informed of your treatment outcome.
No one has suggested natural healing, it is a wonderful idea to look into. Thankyou for suggesting it. I will look into it. I am a big believer in natural healing. Good luck in your treatment! I will keep watching for you posts!!!!

joyceg98

Heavy lifting can definitely affect the eye. When you lift heavy objects, it causes inflation of the blood vessels in your eyes and around the eyes (especially at the temples). In you watch yourself in a mirror, you can watch the veins in the temples swell.

That's why after an eye procedure (like cryo) they tell you not to lift anything heavier than 5 pounds for at least several days, and sometimes they will tell you not to bend over (head below heart) -- you are supposed to squat down (keep your head above your heart).

This is not because they think you are not strong enough, it is to keep the blood from rushing into your head around your eyes, and inflating those blood vessels.

Yes, we do know people who have had retinal detachments due at least in part to exertion.

Best wishes,
Joyce

dotdot

Roxie,
I received a call from the doctor at Mayo Clinic and I did not have any pheos and all of my blood work was negative. Also, my MRI of abdomen was negative. I did however, do DNA for VHL and was told that it will take about three weeks. I go back Dec. 18 to neurology and maybe we will discuss the hemangiomas on my spine and my hip problem.

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