Anyone else get dizzy?

[Dawn]

I'm wondering if anyone else has problems with dizziness/vertigo?  All NS tell me that my dizziness can't be related to the tumor (reminder I have intramedullary tumor at C1-C2) but the vertigo/balance clinic specialists tell me the dizziness is caused by the tumor.  Regardless I can't tell where I am in space especially when I lay back.  I am also having more neck pain when I lay flat along with the dizziness. 
Does anyone else have experience with these symptoms and more importantly does anyone have success in treating the symptoms?

[feliciafawn]

Did they rule out low blood pressure?

[samuridude]

"All NS tell me that my dizziness can't be related to the tumor"

Felicia maybe on to it. I had dizziness prior to removal and I don't post. Tell your NS to read some of the OUR posts and put the ego aside.   

[redaquadeb]

Hi. I also have an intramedullary ependymoma at C2 - C1, and, I too have had diagnosed benign positional vertigo on and off for the past 8.5 years, most recently for a month straight starting this past mid-November. I had at "positioning treatment" (I can't recall the technical name for it!) last week during which the clinicial manipulated me (ie: made me sick) and "fatigue the vertigo out of me" to get my inner ear crystals back in place. I'm not sure if this info helps you, but, I was explicilately told that my vertigo is "probably not due to the tumor."
Additionally, I have SEVERE sciatica, which, again, I was clearly told, is due to herniated discs and "probably not due to the tumor."
This goes for my frequent and debilitating migraines as well!

[Dawn]

Thanks for replies - I am happy to report that I haven't been checking the boards because my husband and I went on vacation which is particularly awesome because for the past couple years it has been difficult for me to be able to plan trips with any assurance that I will be well enough to travel. We had a great time and while I did have symptoms while there they did not stop my fun and activities. That is a victory!

So, low BP is not the cause, but thank you for thinking of that. It's a good thought.
Redaquadeb - I would be very interested in talking with you more as it seems you and I are in the same boat - and our boat is very rare. I have had much difficulty finding anyone with a tumor in the same location (including NS who have never seen tumors in this location). Regarding the dizziness, I have tried the "positioning therapy" many times and it has not worked. I went through the Mayo balance and dizziness clinic and after 8 hours of testing and meetings with the staff they concluded it was not benign positional vertigo and that it was tumor related. So I went to the NS who told me they are wrong. Argh! So I changed NS and Dr Rhines who I like and trust very much also doesn't think it is tumor related. Once again, I am receiving conflicting information. It is difficult. I absolutely believe that everyone has my best interest in mind and are trying their best, but it gets me nowhere!

I agree with Samuridude that if NS would read our posts and put ego aside they may discover that patients living with these tumors are more reliable than their textbooks...hhhmmmm. What happens to me often is that people hear I have a SCT and they automatically think all my symptoms are due to the tumor OR they discount all symptoms being caused by the tumor. There doesn't seem to be a middle road and I know they are all scared of the location of the tumor and sometimes I think they don't want to treat me for fear they will paralyze me. That's what happened with the physical therapist who most recently attempted positioning therapy for the vertigo - I blacked out after she turned my neck and so no more attempts at that therapy. Can't say I would do it again anyway since it didn't work and obviously caused harm. So I continue to live with daily vertigo. Sigh.

If anyone has success with a treatment/medical team, etc, I am always open to hearing it!!

[redaquadeb]

Hi. Would love to talk with you sometime, Dawn. Can we exchange numbers?

[dawn]

yes I would love that. 218-586-3434

[redaquadeb]

  Hi.  I can be reached on my cell phone at 781-424-0085 or at home at 781-341-2497.  Maybe we can catch up later this week or this weekend?  Thanks!

[Lisa D]

I have it also it is related to my tumor
Sometimes it scares the heck out if me
A halo is out of the equation
Hate these rumors

[Jorge Austin]

I have extremely tight neck muscles and this in turn has caused terrible, daily headaches. Those were my first symptoms, then came the dizziness/vertigo. I have now suffered from this for over a year, and am now just seeing improvement. Had I seen the right doctors/therapy from the get go, I don't think I would have suffered so long. But that is the problem, dizziness can be caused from so many things and it becomes a long journey of trial and error of drugs/therapy(http://www.rx-discountcoupons.com/pharmacies/big-pharmacy-com/), etc. Ultimately, for me, it appears that a combination of nerve block injections for my headaches, physiotherapy of the neck muscles (and I don't mean physiotherapy where the therapist hands you a list of exercises to do at home, I mean the type of therapy where they actually work on you, deep muscle massage), and mind-body awareness exercises. I am also trying out Bowen therapy. Not sure how/why I started with these symptoms but have ruled most things out and believe the root cause for me, is stress. I hope this resolves soon for you as you can drive yourself crazy with, "is it this? is it that?" eek.