Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 , It looks like the odds (1 in 500,000) are narrowing quickly! . . . I'm putting Pseudotumor Cerebri in the Subject line to see if anyone else will chime in! I hope you can get your implants out . . . Explant is usually a much easier surgery than implanting - at least among our recommended docs. Hugs and prayers, Rogene . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 HI Dawn, I developed pseudotumor cerebri about two years ago when I was on long term doxy. It was my eye doctor who discovered it. It was so bad, I was one step away from going blind. They now use my case as a teaching case in Rhode Island. I, too, had a spinal tap to relieve some of the pressure. Surgery was never mentioned as an option. I had to be on lasix for about 6 months after the diagnosis and that seemed to do the trick. My next step in treatment was bicillin shots for months. Looking back on it, I think I felt best when I was on those shots. I did do IV primaxin for about 4 months, but it really didn't help that much. Right now, I'm not being treated with any antibiotics, but continue to develop symptoms (neurological, immunologic, arthritis, etc). I guess it's time for me to find a LLMD in Rhode Island, since mine relocated to the west coast. Please feel free to e-mail me privately if you want to " talk " . Joanne --- Dawn Irons <gratefulwife2brad@...> wrote: > Hello, > > It has been awhile since I have posted--not feeling > well....(I know...join the club! LOL!) > > I was just diagnosed with pseudotumor cerebri > (yep...fake brain tumor!) The " other official " name > for it is intracranial hypertension...it is a fluid > pressure build up on the brain which puts pressure > on the optic nerve and can cause permanent > blindness. It is usually found in over weight women > ages 20-45. > > As I was researching this, yes being overweight is > ONE commanality in all of it, but one thing I found > particularly interesting was that the trycycline > antibiotics (doxy and mino) can also cause this > problem...so I fit the bill in both categories. > ACK! > > My MRI revealed the fluid build up behind the optic > nerve and so I was sent for a spinal tap to measure > fluid pressure. Normal is 100 and mine was 300 so > they drained 20cc of fluid from my spinal cord to > relieve some of the pressure. > > The neuro is going to put me on diamox to see if we > can stop the fluid build up. He also mentioned 2 > kinds of brain surgery that " was better than nothing > but had high failure rates " ... > > He suggested weight loss (so much easier said than > done!) My LLMD said weight loss is not likely due > to the state of my thyroid and all other hormone > imbalances in my body. He mentioned the lap-band > surgery for weight loss...insurance wont cover it. > > Now we have to figure out which abx I need to switch > to for the Lyme treatments...while trying to keep > the whole neuro situation in proper balance. > > Has anyone else dealt with this issue? Pseudotumor > cerebri?? > > It might be a good thing to be aware of for those > who take long term doxy...if you are overweight, > this is a very serious side effect to using doxy and > you might want to consider another drug. > > Two journal articles for your consideration: > > Docycycline and intracranial hypertension > www.neurology.org/cgi/content/abstract/62/12/2297 > > Pseudotumor Cerebri secondary to minocycline intake > www.jabfp.com/cgi/content/abstract/15/3/229 > > Any words of wisdom?? > > I am not about to let some knife happy neuro-surgeon > crack open my skull on a surgery he says has a high > failure rate! > > Thanks, > Dawn > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 hi dawn, the wieght loss should be very easy for you now that you know the cause. in june of 06 i wieghed 220 3 months later 160! started treating and eating right, no carbs, sugar, gluten, had energy statrted working out and im back to my 20 year old body at 42. need any help feel free to ask. kurt Dawn Irons <gratefulwife2brad@...> wrote: Hello, It has been awhile since I have posted--not feeling well....(I know...join the club! LOL!) I was just diagnosed with pseudotumor cerebri (yep...fake brain tumor!) The " other official " name for it is intracranial hypertension...it is a fluid pressure build up on the brain which puts pressure on the optic nerve and can cause permanent blindness. It is usually found in over weight women ages 20-45. As I was researching this, yes being overweight is ONE commanality in all of it, but one thing I found particularly interesting was that the trycycline antibiotics (doxy and mino) can also cause this problem...so I fit the bill in both categories. ACK! My MRI revealed the fluid build up behind the optic nerve and so I was sent for a spinal tap to measure fluid pressure. Normal is 100 and mine was 300 so they drained 20cc of fluid from my spinal cord to relieve some of the pressure. The neuro is going to put me on diamox to see if we can stop the fluid build up. He also mentioned 2 kinds of brain surgery that " was better than nothing but had high failure rates " ... He suggested weight loss (so much easier said than done!) My LLMD said weight loss is not likely due to the state of my thyroid and all other hormone imbalances in my body. He mentioned the lap-band surgery for weight loss...insurance wont cover it. Now we have to figure out which abx I need to switch to for the Lyme treatments...while trying to keep the whole neuro situation in proper balance. Has anyone else dealt with this issue? Pseudotumor cerebri?? It might be a good thing to be aware of for those who take long term doxy...if you are overweight, this is a very serious side effect to using doxy and you might want to consider another drug. Two journal articles for your consideration: Docycycline and intracranial hypertension www.neurology.org/cgi/content/abstract/62/12/2297 Pseudotumor Cerebri secondary to minocycline intake www.jabfp.com/cgi/content/abstract/15/3/229 Any words of wisdom?? I am not about to let some knife happy neuro-surgeon crack open my skull on a surgery he says has a high failure rate! Thanks, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Kurt wrote: hi dawn, the wieght loss should be very easy for you now that you know the cause. in june of 06 i wieghed 220 3 months later 160! started treating and eating right, no carbs, sugar, gluten, had energy statrted working out and im back to my 20 year old body at 42. need any help feel free to ask. kurt Kurt, The pseudotumor cerebri does not cause weight gain...so that is not the base problem. It is usually found in overweight women, but that is not the " cause " . So knowing the problem does not fix the weight issue. I have been overweight my entire adult life. This problem has only arisen since I have been on doxy for the last 6 months. I did not gain weight on doxy, so cutting that out wont fix the problem either. To compound the weight problem I also have sleep apnea and a major problem with the thyroid function. Both of which will make weight loss much harder if not " next to impossible " according to LLMD. Another problem on the horizon is that I am currently insulin resistant which is just a few steps away from being diabetic...LLMD says this is all part and parcel of my body and thyroid function NOT metabolizing anything. My MRI showed that my hypothalmus was displaced. That is the primary hormone regulator of the entire body...which is the source of the thyroid and insulin resistence problems. So it is not as simple as " just lose weight " . Even the LLMD said diet and exercise would not help this situation because the hypothalmus is not working properly...and short of brain surgery to put it back in its proper place (which does not guarantee it will function normally when replaced), then we have to deal with the pseudotumor cerebri and the swelling on the brain which could displace it again.... It is quite discouraging! That is why the LLMD suggested the lap band surgery--diet and exercise wont work. Now I just need to figure out how to finance it.... Lots of work to do.... Some days I just feel like giving up! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Dawn, Have you done any serious low-carbing? I've been at it for about 6 years now, and it is amazing for control of insulin resistance. Take a look at Dr. Bernstein's Diabetes book at http://www.diabetes-normalsugars.com/readit.shtml. We started with this, then over time branched out a bit with the _Protein Power_ series. I started this long before my Lyme was diagnosed, and it made a huge difference in symptoms. Night and day. I don't metabolize sugars well at all, but fats work very well for me, and I actually had to force myself to eat more in order to stop losing weight. It is easier for me to do, because my husband is diabetic and we don't have children. So, nothing in the house to tempt either of us. It's harder if you're the only one in the household doing it. The first two weeks are very hard, either way. Feel better, D. Dawn Irons <gratefulwife2brad@...> wrote: Kurt wrote: hi dawn, the wieght loss should be very easy for you now that you know the cause. in june of 06 i wieghed 220 3 months later 160! started treating and eating right, no carbs, sugar, gluten, had energy statrted working out and im back to my 20 year old body at 42. need any help feel free to ask. kurt Kurt, The pseudotumor cerebri does not cause weight gain...so that is not the base problem. It is usually found in overweight women, but that is not the " cause " . So knowing the problem does not fix the weight issue. I have been overweight my entire adult life. This problem has only arisen since I have been on doxy for the last 6 months. I did not gain weight on doxy, so cutting that out wont fix the problem either. To compound the weight problem I also have sleep apnea and a major problem with the thyroid function. Both of which will make weight loss much harder if not " next to impossible " according to LLMD. Another problem on the horizon is that I am currently insulin resistant which is just a few steps away from being diabetic...LLMD says this is all part and parcel of my body and thyroid function NOT metabolizing anything. My MRI showed that my hypothalmus was displaced. That is the primary hormone regulator of the entire body...which is the source of the thyroid and insulin resistence problems. So it is not as simple as " just lose weight " . Even the LLMD said diet and exercise would not help this situation because the hypothalmus is not working properly...and short of brain surgery to put it back in its proper place (which does not guarantee it will function normally when replaced), then we have to deal with the pseudotumor cerebri and the swelling on the brain which could displace it again.... It is quite discouraging! That is why the LLMD suggested the lap band surgery--diet and exercise wont work. Now I just need to figure out how to finance it.... Lots of work to do.... Some days I just feel like giving up! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Hi Dawn, Sorry to hear the news, you must be pretty scared! hugs. Maybe you can ask your LLMD about taking a TOA free Cat's Claw, instead of synthetic antibiotics. Even if just for awhile. I hope you will get the help you need and no surgery will be needed. jan > > Hello, >> > I was just diagnosed with pseudotumor cerebri (yep...fake brain tumor!) The " other official " name for it is intracranial hypertension...it is a fluid pressure build up on the brain which puts pressure on the optic nerve and can cause permanent blindness. It is usually found in over weight women ages 20-45. > > As I was researching this, yes being overweight is ONE commanality in all of it, but one thing I found particularly interesting was that the trycycline antibiotics (doxy and mino) can also cause this problem...so I fit the bill in both categories. ACK! > > Now we have to figure out which abx I need to switch to for the Lyme treatments...while trying to keep the whole neuro situation in proper balance. > > > Any words of wisdom?? > I am not about to let some knife happy neuro-surgeon crack open my skull on a surgery he says has a high failure rate! > > Thanks, > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Dawn, I was able to get things my insurance denied by having my dr. write that it was a " medical necessity " . Maybe your dr. can try that, because it sure sounds like one to me! jan > > That is why the LLMD suggested the lap band surgery--diet and exercise wont work. Now I just need to figure out how to finance it.... > > Lots of work to do.... > Some days I just feel like giving up! > > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 hang in there dawn dont throw in the towel! i had just about all those things going on too, they all seem to be going by the wayside, so there is lots of hope. when all else fails, pray! peace, kurt Dawn Irons <gratefulwife2brad@...> wrote: Kurt wrote: hi dawn, the wieght loss should be very easy for you now that you know the cause. in june of 06 i wieghed 220 3 months later 160! started treating and eating right, no carbs, sugar, gluten, had energy statrted working out and im back to my 20 year old body at 42. need any help feel free to ask. kurt Kurt, The pseudotumor cerebri does not cause weight gain...so that is not the base problem. It is usually found in overweight women, but that is not the " cause " . So knowing the problem does not fix the weight issue. I have been overweight my entire adult life. This problem has only arisen since I have been on doxy for the last 6 months. I did not gain weight on doxy, so cutting that out wont fix the problem either. To compound the weight problem I also have sleep apnea and a major problem with the thyroid function. Both of which will make weight loss much harder if not " next to impossible " according to LLMD. Another problem on the horizon is that I am currently insulin resistant which is just a few steps away from being diabetic...LLMD says this is all part and parcel of my body and thyroid function NOT metabolizing anything. My MRI showed that my hypothalmus was displaced. That is the primary hormone regulator of the entire body...which is the source of the thyroid and insulin resistence problems. So it is not as simple as " just lose weight " . Even the LLMD said diet and exercise would not help this situation because the hypothalmus is not working properly...and short of brain surgery to put it back in its proper place (which does not guarantee it will function normally when replaced), then we have to deal with the pseudotumor cerebri and the swelling on the brain which could displace it again.... It is quite discouraging! That is why the LLMD suggested the lap band surgery--diet and exercise wont work. Now I just need to figure out how to finance it.... Lots of work to do.... Some days I just feel like giving up! Dawn Quote Link to comment Share on other sites More sharing options...
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