Topic: my new journey... I need a neurosurgeon. having brain issues. Anyone got a good one?
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Hi everyone. I haven't been on here much lately, but that is becasue I am Lyme sx free!! yay!! but... also been busy with something else- I have some stuff going on in my brain that is getting pretty bad.
Was thought I have chiari, but even though I do have some thing happeing to my tonsils (brain), that is not my big problem theree. it is more. like brain shifting . midline shift.
I guess this could have been caused by brain swelling which was probably from my lyme? or who knows what. I really don't know what is happening to me.
I do know that im getting worse and need someone now. I wsa searching for chiari drs becasue that is what I htought I had as my big problem, but I think I need to just find a good neuro surgeon that knows about "all" brain things as I seem to have a couple things going on in there.
Anyone know of any? I know no dr is perfect, but imm getting kinda scared and wasnt to feel as safe as possible in someone's hands. right?
I googled and see there is a list of top places for adult neurosurgery. one is johns hopkins ranked #2 a couple states awsay from me. NY is closer and ranked #3.
im just reaching here. hoping someone here can help me some how. any thing is appreciated. thanks
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Just to warn you, the wait to get in with a Hopkins top doctor could be very, very long. Suggest you call and find out.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Just be careful. They can do a workout on us and still be wrong. They thought I had a pituitary tumor, and I didn't. I'd get at least a 2nd opinion if someone thinks they found something.
Posts: 13116 | From San Francisco | Registered: May 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I know of one of the best neurosurgeons in NYC. I saw him back in 2008. Luckily, I wasn't at the point where I needed neurosurgery. PM me and I'll give you his info. I suppose I could post it, since he's not an LLMD.
His list of articles, book chapters, etc. is quite impressive. He also teaches it at Weill Cornell.
He will not tell you that you need surgery unless you really do. I hope for your sake that you don't. But it is better to find out.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Brain swelling can happen with mold exposure .. or even MCAS, not to mention Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by Lymetoo: Brain swelling can happen with mold exposure .. or even MCAS, not to mention Lyme.
Arghhh!! Sad to say I have mold exposure, and it would be extraordinarily expensive and difficult to move or remediate. But I don't want to hi-jack your thread.
A very important thing to note, Lymetoo!! Sigh.
Posts: 3771 | From around | Registered: Mar 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
LisaK... so nice to hear you've had such great improvements. Wonderful news!
Neurologists that are also chiropractors- not many in the world- are very good at helping the "left over" symptoms and current neuro symptoms Lyme patients and others experience.
They are referred to as Chiropractic Neurologists and have been trained in both fields of medicine.
They understand and can help the shifting and other things you described and do so with not only Lyme patients, but many others too.
And they typically take insurance, a real plus for many! If you call some be sure to ask if they are practicing the neuro part of their training. Very important as some were trained, but don't find many people who need it and don't stay up to date as those actively using it.
Before you consider having a neurosurgeon examine or treat you- ESPECIALLY one at Hopkins- perhaps going to one of these less invasive professionals who specialize in correcting brain & neuro issues could be a consideration?
No pain involved, no drugs, all natural.
Type in the initials of your state in the section provided below at the link (that's all)- and names and contact info will pop-up for you.
Certainly if they feel you need more that what they can provide they will refer you elsewhere.
Good luck to you.
PS... Children (with Lyme & tick borne diseases) at Hopkins and other local hospitals working with Hopkins docs have been separated from their parents and were to get the shock treatments (can't think of the name, very tired right now) for brain involvement, neuro, and psych symptoms.
Thankfully we managed to get some of them out of there and taken to Dr. J* before they suffered that atrocity.
If we can prevent more tragedies that would be good.
posted
I don't know that this would pertain but thought I'd put it out. I'm getting towards the end of the Buhner lyme protocol and I still have brain issues, and I presume that to be lyme.
I also have had sinus issues for decades and I though I'd try Buhner's sinus formulas. They are not the same as the herbs he uses for lyme. They are listed on page 347 of either his lyme book or his mycoplasma book. I copied the page and wrote the page number but not the book.
I bought two Snoot nasal sprayers from Amazon, used Buhner's nasal tincture formula in one and his essential oil formula in the other, and started spraying.
Shortly, my brain was acting funny so I'm pretty sure the spray was either getting lyme, or sinus, or other bugs in my brain.
Since, my brain is in much better shape and so are my sinuses. I sprayed a lot initially but don't need to so much now. Will continue until no longer needed.
Posts: 705 | From WA state | Registered: Jul 2011
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posted
Maybe you can buy a Hi-Tech machine to get rid of any remaining mold?
Clean Air Queen -- With Hi Tech .. on Facebook
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks everyone, I do have mold here. did a lymphatic foot cleans- and don't laugh or say they are fake becASUE THE PERSON (oops caps) I go to is an iridologist and she has a $5000 machine and put herself into cancer remission with it!
the foot bath really helps me greatly in getting the mold out of my body. so much to the point of barely smelling it any more. studies show the more you can smell the mold the more you have it in your own body. so this is a very good sign for me.
I do suspect mold diong this to my brain and also heavy metals which i know I have and also have a hard time eliiminating.
but have not foudn any dr willing to address these things for me.
a chiro? well, I am not sure I want to go that route. and every dr or PT has told me not to use one. and frankly I am very much afraid they will do more damage.
I am at the point now that I can barely sleep lying down any more. my head/neck/face bones all shift through the night. my bady parts are becoming numb nightly now. - like lips, toes, and drooling and other things.
it's really scary. and I am freaking out. and very preoccupied which is making me mad . I have a family that needs me. there is no time for this!!
I googled this morning . "lyme disease brain stem compression" and the first thing listed was a post from here! from Gary, aka Lymetwister. his case sounds so much like mine! so I am trying to contact him if possible, but
I have an apt with 2 nuerosurgeons next week. one at a top 20 neuro center and one local dr . I am having a hard time getting the dr offices to understand that I don't want to go by my MRI REPORT, but my actual MRI disc. I think the neuro radiologist missed things.
so I *finally* remembered that someone here posted to get another opinion from another neuroradiologist I think . whoever that was THANK YOU. but I just remembered that yesterday! haha
so I called the top dr place and they won't read another hospital's study, UGH, so it dawned on me to ask the MRI center where I got it. they said they don't ever have another dr read, but can have the same dr read with information on what im looking for
so that is what I did. I faxed them the report I got from a top surgeon in another state whom I sent my MRI to before I started this thread. he suspects intracranial pressure and a brain stem compression. "more study needed"
it aslo had a bunch of measurements on it and other info. I just hope it shows something else. becasue I am getting worse by the day.
I think this al lcame from having lyme or riding a roller coaster that was really wicked- or both , of course. I remember not being able to walk for some time aft riding it years ago and since can ride no rides, and I get
motion sickness from everything.
im having a hard time collecting my thoughts so sorry if i sound funny here.
the other thing I recently had was EMG. the only thing that found was "ongoing nerve damage" in one section coming from my cspine that is making my left arm weak.
they didn't test my right side though and I can tell my entire body is becoming weaker. just hope some dr can help me. somewhere.
and I saw on Gary's post that some were telling him lyme might cause this and after treatment resolve it, but I do['nt feel lyme-y any more at all. the metals could be it, or the mold or bobth, but every dr just shrugs that off when I mention it.
I rely don't want surgery.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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