posted
thinking of you.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Gary, you are in our prayers. Did you get a second opinion on this? Hope you do as it's important to get a second (or even a third) opinion before making any decisions when it comes to something as serious as this.
We are praying that God give you wisdom, guidance and His peace and grace be upon you and your family.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I have read many arterial vasculitis cases that
were caused by lyme. I too would seek some of these
authors on this subject for surgery if necessary. Prayers they may know more.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Gary,
you're going to be ok. I agree with the above posters who have suggested 2nd opinions...especially in this situation.
The babesia positive that you just received, which strain? that explains a lot of your symptoms too....
Remember that I had the vasculitis thing on a MRA of my major arteries in my brain...they said that it looked like Kawasaki's Disease....repeat tests showed that it had resolved....
Maybe this might go away with treatment? Check every avenue out first!
Talk to you soon.
Posts: 3975 | From usa | Registered: Aug 2007
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Gary, don't panic yet. MRI's are NOT always what it seems. You don't worry until it's time to worry.
Go get a second and third opinion, nothing less than 3.
All of us will be thinking of you and praying for you.
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry to hear this Gary. I too agree 100% to get multiple opinions and explore the Babesia aspect. Now, if life threatening, then do what must be done.
I can't imagine the frustration and fear. I pray you have the strength to beat this battle. The other side of the coin is what if you got your life back? That little glimmer of hope is what keeps us going.
What doctor/medical facility are they recommending?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
You do have an really good LLMD, don't you?? I certainly hope so. If not, you should get one ASAP (I know, it's not quick to get one). Because you should also consult with your LLMD about this.
Because they would likely know whether this may resolve with Tick Born Illness treatment. Even though they may not be experts in neuro-vascular surgery! Everyone is right, don't panic now. I know, easier said than done. Muster all the support you can here.
BTW, it seems to me that it is good that at least you have some answers, ie, the Babesia + test now and the MRI--whether or not you have the surgery. But treatment may do the trick without surgery. (Of course I'm not a doctor and don't really know your case!!).
Posts: 3771 | From around | Registered: Mar 2008
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posted
I agree that it would be a good idea to check in with LLMDs who know about this condition, whether it accurately can show up on an MRI, and if so, whether it needs surgery or will resolve in time on its own or with some other form of treatment.
Part of my medical history: I had unnecessary brain surgery based on an MRI report of a pituitary tumor, which wasn't there. The brain surgeon then said I was a medical mystery. I was able to inform him 20 years later about my Lyme diagnosis.
So, that's why I say to check in first with LLMDs who know about this kind of condition with Lyme.
Posts: 13116 | From San Francisco | Registered: May 2006
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Shosty
Unregistered
posted
I just looked up this problem (it is under "tortuous" if you google it) and it looks like it is the kind of problem that can be subject for interpretation by the radiologist, so defnitely get a second opinion.
It also says that if the cause is unclear, conservative treatment might be best.
What are your symptoms? Are they bearable? Does the neurologist say that this condition is dangerous?
Maybe you could go to a spine center, where they specialize...
The surgeries described on the site were not that risky, but perhaps you have been told otherwise with the problem that far up your spine. "Brain surgery" sound scary but this would be close to you neck, right?
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Please pursue this with a second opinion.
My goodness, that diagnosis and treatment recommendation
Would do me in by itself.
I am so sorry you are suffering through this.
What about possible encephalitis from Lyme and company which causes brain swelling?
Please get a second, third and fourth opinion.
Prayers sent.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I would - if possible - start on heavy IV ABX to see if things improve. Have a new MRI to see if any changes if you are not i need for an urgent surgery. I wish you the best! HAng in there!
Posts: 347 | From sweden | Registered: Feb 2008
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posted
I would definitely get a 2nd & 3rd opinion from neurosurgeons (not neurologists). I would also like to know where the neurosurgeon that does this surgery is located.
Hang in there!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Yes.. Gary.. Try to get other opinions for sure. Esp if you had so many other MRIs an nothing showed up before.
Surgery is risky and no promises.. that is scary.
There may be some other explainations like others here are mentioning that only a LLMD would be able to diagnose and help you with.
Did you ever end up getting a LLMD doctor? I hope so... and I hope you can get to working on other opinions for diagnosis and treatment...
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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So sorry to hear this. Yes, 2nd, 3rd, 4th opinions. Lyme seems to manifest in so many different ways. If any doc thought the underlying cause could be Lyme...would major aggressive ABX treatment lead to improvement? Surely seems worth a shot.
Thinking and praying for you. Please keep us posted. TS
Posts: 566 | From West Coast | Registered: May 2008
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I had been offered this surgery when I had a severe brain stem/neck involvement. So glad I got to a neurosurgeon who said "no".
Toxic heavy metals in the occiput and brain stem have a lot to do with it. And if you start treating with that in mind, the neck brainstem problems will be disappearing. The detox phase took a couple of years, because as I have recently discovered, I was allergic to most the heavy metals hanging out in my brain back then. Had I treated the allergies before, I would have been able to unload the toxins much more quickly. I am doing that now and still releasing neurotoxins (mainly metals).
Lyme and surgeries do not go well together. Be sure that the person recommending this understands Lyme.
Best of luck to you.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
My friend is an NP in neurology for over ten years and I just asked her about this. She said that heavy metals will make it appear that you have this because they will distort the MRI. She has seen this happen before. Given that you know you have lyme and/or co-infections, it is likley you have heavy metals. It might be worth it to try the Cutler protocol before having surgery.
Posts: 47 | From nj | Registered: May 2004
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quote:Originally posted by springshowers: [QB] Yes.. Gary.. Try to get other opinions for sure. Esp if you had so many other MRIs an nothing showed up before.
Surgery is risky and no promises.. that is scary.
absolutely!!
Will keep you in my prayers.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Sorry you are going through all this. I hope things turn around for you soon.
A few months back after you stopped the IVIG you had been talking about how it had possibly stirred things up and that you were not feeling well. Given the half life of the medication and how long it has been it should mostly be gone by now..but do you think that it still might be the cause of the different issues (including this one) you have been experiencing?
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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posted
BTW,reminds me a little bit of what MS sufferers have found out, that they have some vascular things going on.
There are whole sections about CCSVI in their forums now. Clinical trials have started, they block the narrowed veins (not arteries, veins) or put in stents.
I wanted to mention that one person keeps posting there that propping up the head end of the bed helps for some reason or another. Maybe that helps for other things too. There is more in the thread.
Posts: 366 | From Europe | Registered: Nov 2008
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posted
Hi Gary, I also have something called Chiari 1 Malformation. It sounds vaguely like what you are describing. Check out sites on this subject as well. From what I have been told by docs specializing in this the surgery is no guarantee that the symptoms go away. In fact, for most adults, all the symptoms reappear in less than a year. Good luck. I agree with the others no knife until it is the last draw! Blessings, just Jan
-------------------- I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan... bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.
NICENESS COUNTS!! Posts: 61 | From orange county new york | Registered: Jul 2008
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posted
I also have Chiari 1 Malformatin with restrcited CSF which is causing some brain stem compression issues.
CM is basically a herniation of the cerebellum into and through the spinal canal which can cause a restriction in CSF flow. Goal of surgery is to create more space for the CSF to flow freely again...and hopefully minimize and halt the progession of Neuro. symptoms.
I agree with everyone else. Get 2nd, 3rd and 4th opinions before undergoing brain surgery - some things cannot be undone. Best wishes to you. TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Thinking of you and sending prayers your way.
I agree to getting more than just 1 or 2 opinions.
Hope you are feeling better!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Before you even consider surgery please hear me out. My son also had compression on his brain stem. He had it for years... anyway we ended up going to an Upper Cervical chiropractor- this is a specialized method where they work on the atlas and the axis, also known as C1 and C2. There is none of the usual chiropractor stuff at all- as I said this is specialized and very specific. The work they do releases pressure on the brain stem and helps the nervous system "reset" itself, over time.
I have more info if you would like it but I cannot emphasize again that the upper cervical approach is specialized and this is not the usual chiropractor stuff... but, it is extremely helpful non-surgical approach that helps a lot of people.
Best to you,
Posts: 89 | From NC | Registered: Jun 2008
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posted
Other head work that can be helpful for bloodflow is cranial work, as well as a good chiropractor checking out the junction between the atlas and the occipital head bone.
Posts: 13116 | From San Francisco | Registered: May 2006
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