Question for Dr. Young or Nurses

[Suzie Q]

I have had alot of illness for the past 2 years. It all started with a high fever, cold chills and a stiff neck. I also had a severe sinus infection which i had sinus surgery for. After 2 years and 4 doctors they cant find out what is wrong with me. All my tests, including AIDS, has came back negative or good. But i still have low grade fevers, short term memory problems, confusion, pain in the left side of my head around different spots of my ear and a whooshing sound in my left ear. Right side of my head is fine.

After the sinus surgery i kept telling the ENT doc that something was wrong. Meanwhile at work i was not doing well, bosses were noticing i was off then i started getting lost driving during work. This was getting out of hand and combined with other physical problems i gave up and resigned & filed for disability.

After the last round of tests it still shows that i have enlarged ventricals in my brain for someone my age. The first CAT scan showed my Lateral Ventrical was enlarged. One doc said he thought it was Lymes Disease. Although the tests came back inconclusive and the last one only one band showed positive for it. I have had 2 rounds of anti biotic and after each round i felt tons better. But now after this last test the specialist i was seeing would not give me any more anti biotic.

It doesnt help that these doctors are not Lyme literate. I have been now pushed out another door because they gave up. The last doc is sending me to the MAYO Clinic. This had me thinking though....Could this spinal cord fluid problem be caused by the major bone spur in my neck and spinal canal? The last MRI i had of it was over 5 years ago and it showed it was causing leaking of fluid. I have had stiffness and sore muscles on the left side of my neck for a month now. Doctors are not listening to me or they fill intimidated over my medical history and or problems to where they dont want to deal with me i feel.

BTW, i had a Cysternogram and it was normal, no blockages or tumors. But the nuro doc failed to send any spinal fluid off for tests.

Its been over 2 years now and i am very depressed. I went to my reg. doc and told her i was suicidal and serious about it, she has me in to see a shrink in Feb. When I told the last doc i was done and not seeing another doctor... She called my personal doc and me at home telling me of her call into the MAYO clinic.

So my question was could the brain ventrical swelling be caused by my cervical problems? The bone spur is at the C5-6 level.

Thanks, Suzie

[TAM63]

Hi Suzie, I don't know the answers. But it's no fun at all being mystery diagnosis - that's much better on TV. We're doing the same, we may see you at Mayo.

I hope they get it figured out soon.

[SCI-Nurse]

Hi Suzie,

I can understand your frustration- you have been through so much!
I will ask Dr Young to respond when he can as I am not an expert in the area of your questions.
Hang in there and I am glad you are being vocal about your needs and frustration.

AAD

[TAM63]

The only other thought I have, is if for any reason you don't go to Mayo, I'd suggest trying to find a good infectious disease doc. If the antibiotics helped, that says something perhaps.

I hope you get to Mayo, and they figure it out soon.

[Wise Young]

Originally Posted by Suzie Q

I have had alot of illness for the past 2 years. It all started with a high fever, cold chills and a stiff neck. I also had a severe sinus infection which i had sinus surgery for. After 2 years and 4 doctors they cant find out what is wrong with me. All my tests, including AIDS, has came back negative or good. But i still have low grade fevers, short term memory problems, confusion, pain in the left side of my head around different spots of my ear and a whooshing sound in my left ear. Right side of my head is fine.

After the sinus surgery i kept telling the ENT doc that something was wrong. Meanwhile at work i was not doing well, bosses were noticing i was off then i started getting lost driving during work. This was getting out of hand and combined with other physical problems i gave up and resigned & filed for disability.

After the last round of tests it still shows that i have enlarged ventricals in my brain for someone my age. The first CAT scan showed my Lateral Ventrical was enlarged. One doc said he thought it was Lymes Disease. Although the tests came back inconclusive and the last one only one band showed positive for it. I have had 2 rounds of anti biotic and after each round i felt tons better. But now after this last test the specialist i was seeing would not give me any more anti biotic.

It doesnt help that these doctors are not Lyme literate. I have been now pushed out another door because they gave up. The last doc is sending me to the MAYO Clinic. This had me thinking though....Could this spinal cord fluid problem be caused by the major bone spur in my neck and spinal canal? The last MRI i had of it was over 5 years ago and it showed it was causing leaking of fluid. I have had stiffness and sore muscles on the left side of my neck for a month now. Doctors are not listening to me or they fill intimidated over my medical history and or problems to where they dont want to deal with me i feel.

BTW, i had a Cysternogram and it was normal, no blockages or tumors. But the nuro doc failed to send any spinal fluid off for tests.

Its been over 2 years now and i am very depressed. I went to my reg. doc and told her i was suicidal and serious about it, she has me in to see a shrink in Feb. When I told the last doc i was done and not seeing another doctor... She called my personal doc and me at home telling me of her call into the MAYO clinic.

So my question was could the brain ventrical swelling be caused by my cervical problems? The bone spur is at the C5-6 level.

Thanks, Suzie

Suzie,

A bone spur alone is unlikely to cause enlarged ventricles. I don't understand your reference to the "leaking of fluid" and how that is related to the bone spur.

A previous infection or inflammation of the meninges (i.e. meningitis) can reduce absorption of cerebrospinal fluid and lead to enlarged ventricles. I don't have enough experience to be able to tell you whether this is one of the consequences of a Lyme disease or some other kind of infection.

Going to the Mayo Clinic may be a good idea because they have some very experienced doctors there and they may be able to piece together the entire picture. I have the feeling that a piece of the puzzle is missing.

Wise.

[Suzie Q]

Suzie,

A bone spur alone is unlikely to cause enlarged ventricles. I don't understand your reference to the "leaking of fluid" and how that is related to the bone spur.

A previous infection or inflammation of the meninges (i.e. meningitis) can reduce absorption of cerebrospinal fluid and lead to enlarged ventricles. I don't have enough experience to be able to tell you whether this is one of the consequences of a Lyme disease or some other kind of infection.

Going to the Mayo Clinic may be a good idea because they have some very experienced doctors there and they may be able to piece together the entire picture. I have the feeling that a piece of the puzzle is missing.

Wise.
Yes, i dont think i mentioned that i did have viral meningitis. High fever/chills/stiff neck for 2 days. It was horrible, then after that is when i went really down hill.... i mention to docs i think its an infection in my head but i am not taken serious i suppose. I need to know what i should do to be taken serious and what tests they need or can do for me. Thanks.