Balance disorder and Brain Lesions

I am 40 years old male. My problem started almost one year ago. I have imbalance problem, double vision and electricity in my body. I must hold to somebody when I need to walk as I feel dizzy and can't control my balance. I don't have any problem when I am sitting in the office or in the car with the driver.

I have visited many doctors. I have taken Cortisone, Interferon and Cladribine (Chemotherapy) but did not receive positive results. I have done brain MRI 3 times and recently conducted a brain MRI with contrast as the doctor believed that I have a cyst in my head which is effecting my vision and balance. After the doctor reviewed the MRI he said that I have more than 3 brain lesions and one of them is pressing on my balance nerve.

I have had a thyroid surgery in 2001 in USA, Rochester - Mayo Clinic where I there was a growth and had half of the thyroid removed. I do not take any medication for this. In year 2006 I had a surgery in my knee at the same hospital.

I have a rare disease in my bone called Erdherm Chester which gives a lots of disturbance in my bone especially in my legs.

I am not living a normal life. Can anyone advise me on what to do.

[rumpled]

Well, we are not doctors, but it seems that you are seeing some - but you are not getting too far.

Perhaps you need to get copies of the records and get another opinion. I would go for the head first since that seems to be the most pressing. Depending on the size and location of the cyst, they should be able to address it and thus alleviate  your symptoms, I am not quite sure why they have not done that as yet.

With half your thyroid gone (had that done as well) I hope they are monitoring the rest -but you still may need thyroid meds depending on why you had it out. Sure, you may be ok, but you may not be optimal - and it may add to  your symptoms.

Do you see a bone endo or specialist for your disease?

[rumpled]

Well, we are not doctors, but it seems that you are seeing some - but you are not getting too far.

Perhaps you need to get copies of the records and get another opinion. I would go for the head first since that seems to be the most pressing. Depending on the size and location of the cyst, they should be able to address it and thus alleviate  your symptoms, I am not quite sure why they have not done that as yet.

With half your thyroid gone (had that done as well) I hope they are monitoring the rest -but you still may need thyroid meds depending on why you had it out. Sure, you may be ok, but you may not be optimal - and it may add to  your symptoms.

Do you see a bone endo or specialist for your disease?

[rbs76]

Dear Rumpled,

Many thanks for your reply.

I appreciate you time to look into my note and share with me the problem.

I live in Dubai, UAE, a well establish lawyer by profession. I had my thyroid removed and the growth was benign. I have the rare bone disease called Erdheim Chester. Before this problem I used to be a healthy person. Currently, I am doing all my  work but with 40% less than before. I was told by my doctor that it is hard to remove lesion due to its seat in the brain which makes it difficult for a Neurosurgeon to remove it without tissue.

I was told that there is a new technique called Gamma Knife Radiosurgery but I am not sure if that is suitable for me.

Currently, I am suffering from balance issue and electric shock in my body especially the right side of my face and arm. I have tried some medications such as Cortizon, Interferon and Chemotherapy (Cladribine).

I know you are not a doctor but I thank you for your assistance. If you feel you have more to add you are welcome to email me on rashid.***@****

[rumpled]

Emails are not permitted in the forums. PMs can be used.

Gamma knife, or other types of radiation may or may not be appropriate depending on the type or location of the lesion. It sometimes can take a while to work, and can effect the tissues that are ok, so you have to decide on risk vs benefits. There are endoscopic techniques now that can get into the little areas with less disruption, again, it depends, and remove the cyst.

It is possible to get copies of your medical records and send the CD and records around to other hospitals and travel to places to get treatment. I went 3000 miles for mine.

Treatments can be helped - but have you found a specialist for Erdheim Chester as it can be a multisystem disease from what I read - so it can cause a lot of issues not just bone.