Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
As to get to the point and try to keep my post short, I'll skip some details and just try to share the important stuff.
I saw my Neurosurgeon - Dr. McGregor last Wednesday. I explained that while my shunt works it doesn't work consistently. That while initially I could be somewhat active (Clean house, shop, run errands) for three to four hours....now I'm reduced to a 3 to 4 hour time frame before my shunt swells from front to back and I'm down for a week with aches, pains and headache. During severe times my eyesight blurs or I have double vision. Moreover, more recently, I also get severe pain in my left jaw and temporal area for at least two weeks out of every month and a ticking/or squeaking noise that keeps pulse with my heartbeat is present in my left ear.
Dr. McGregor said that he was both sorry and disappointed that I still don't have doctors in my area who can follow up with my care. He stated that what I am explaining to him is very possible as my shunt is designed to shut off when my csf levels are normal. He says that when I am resting or my levels are normal or low the shunt shuts off....but, when I am up and active...(not running a marathon...just living life), my CSF production goes crazy. BUT, the shunt doesn't automatically turn back on. The CSF has no place else to go so it filters around my shunt and catheter causing the swelling ...and apparently this build up and blockage could last up to a week. He also said that with heavy flow my ventricles could be collapsing as my shunt valve is currently opened all the way. Either way my shunt isn't working consistently. This is also why I get the sharp abdominal pain...because instead of dripping in small doses all the time...it's gushing in larger amounts intermittently. McGregor said my pain is very real and he felt bad for me and he recommends that I see a pain management team. Moreover, he said they could admit me to the hospital for 7 days and do a lumbar drain test. The test would require that I lay in bed for those 7 days. The test would be used to determine whether or not I need to have a second shunt put in...a lumbar peritoneal shunt....and might give some insight as to how my current shunt is working. If this test indicated that I need a LP shunt than they could do that surgery. But, I am reluctant. As confirmed by McGregor, this surgery is more invasive, it is historically more troublesome and it can cause Chiari. Sooooo...I don't know.
Then I went to see Dr. Katz on Friday. Dr. Katz seconded what Dr. McGregor had to say about his disappointment that I don't have a surgical team to follow my care. Moreover, he is very angry with Dr. Friedman and said she has a God complex. Dr. Katz is very concerned about my deteriorating condition and returning symptoms including jaw pain and pressure, including the ear noise that is keeping time with my heartbeat. I asked him if I were to lose weight would this help....He stated that "You are not my typical IH patient, and likewise, my guess is that weight loss make that big of a difference. Moreover, my guess is that your IH is secondary in nature." I asked Dr. Katz about the Octreotide injections and he said he absolutely believes that these injections would be helpful as they had great success in the studies. HOWEVER, although he is currently trying to get certified to administer these injections....insurance companies are not paying for the cost. Currently, insurance only covers Octreotide injections for people with Acromegaly. As such, I'd like to start a nationwide petition for coverage of these injections for IH patients. In fact, I'm starting first on FB...and speaking to Senator Schumer's office this week. AND...GOOD NEWS!!! A new form of Octreotide has been created negating the need to endure these injections three times a day. The new form is a stronger version of the drug requiring only one injection a day. (Although, Dr. Katz still recommends that patients do the 3-a-day regimen for the first month to build up a tolerance before taking the stronger version!) Then Katz and I discussed the once discussed and continuing clear nasal drainage when my pressures are high. He believes that I have CSF Rhinorrhea and sent me straight down to see Dr. Das (an Otolaryngology Surgeon who specializes in treating this condition.)
After examination by Dr. Das, he stated undeniably without a shadow of a doubt, that indeed I have CSF Rhinorrhea. He believes the hole is in my temporal lobe, but, as I had been sitting around waiting in Dr's. offices all day and mostly at rest, my pressures weren't high and therefore my leak was harder to see on CAT scan. Until, he can locate the hole he can't take me in for surgery to repair it. He said that if left unrepaired I could develop a very severe form of meningitis and die. Sooooo...he gave me some sample tubes to bring back with me in hopes that I can catch 2 ml. of this drainage, put it on ice, and send it to him. He saw the CSF leakage high in my sinus cavity with a scope, but, without surgery he couldn't sample it as it was too high, and the sample was too small. But, he said "It's definitely CSF." He wants me to have several vaccinations to increase my immunity against meningitis. He stated that the only other way to make this better is to have a shunt revision. He said, "Your shunt isn't working and Dr. McGregor needs to give you a new one. The problem is that unless you have an infection or unless your shunt stops working completely he won't revise it." He said, "Shunt surgeries pay very little to the NS's who do them, but, their risk is huge...so....they don't like to do these surgeries until they absolutely have to."
After my appointment with Dr. Das, I called Dr. McGregor to see what he thinks about all this, but, his secretary...instead of getting McGregor on the phone....said I needed to reschedule a new appt. with him. I LIVE IN NY!!!! So, now, I'm back home.....and I'm really no better off than when I left except I have more information.
So that's what's up....
MM3
I saw my Neurosurgeon - Dr. McGregor last Wednesday. I explained that while my shunt works it doesn't work consistently. That while initially I could be somewhat active (Clean house, shop, run errands) for three to four hours....now I'm reduced to a 3 to 4 hour time frame before my shunt swells from front to back and I'm down for a week with aches, pains and headache. During severe times my eyesight blurs or I have double vision. Moreover, more recently, I also get severe pain in my left jaw and temporal area for at least two weeks out of every month and a ticking/or squeaking noise that keeps pulse with my heartbeat is present in my left ear.
Dr. McGregor said that he was both sorry and disappointed that I still don't have doctors in my area who can follow up with my care. He stated that what I am explaining to him is very possible as my shunt is designed to shut off when my csf levels are normal. He says that when I am resting or my levels are normal or low the shunt shuts off....but, when I am up and active...(not running a marathon...just living life), my CSF production goes crazy. BUT, the shunt doesn't automatically turn back on. The CSF has no place else to go so it filters around my shunt and catheter causing the swelling ...and apparently this build up and blockage could last up to a week. He also said that with heavy flow my ventricles could be collapsing as my shunt valve is currently opened all the way. Either way my shunt isn't working consistently. This is also why I get the sharp abdominal pain...because instead of dripping in small doses all the time...it's gushing in larger amounts intermittently. McGregor said my pain is very real and he felt bad for me and he recommends that I see a pain management team. Moreover, he said they could admit me to the hospital for 7 days and do a lumbar drain test. The test would require that I lay in bed for those 7 days. The test would be used to determine whether or not I need to have a second shunt put in...a lumbar peritoneal shunt....and might give some insight as to how my current shunt is working. If this test indicated that I need a LP shunt than they could do that surgery. But, I am reluctant. As confirmed by McGregor, this surgery is more invasive, it is historically more troublesome and it can cause Chiari. Sooooo...I don't know.
Then I went to see Dr. Katz on Friday. Dr. Katz seconded what Dr. McGregor had to say about his disappointment that I don't have a surgical team to follow my care. Moreover, he is very angry with Dr. Friedman and said she has a God complex. Dr. Katz is very concerned about my deteriorating condition and returning symptoms including jaw pain and pressure, including the ear noise that is keeping time with my heartbeat. I asked him if I were to lose weight would this help....He stated that "You are not my typical IH patient, and likewise, my guess is that weight loss make that big of a difference. Moreover, my guess is that your IH is secondary in nature." I asked Dr. Katz about the Octreotide injections and he said he absolutely believes that these injections would be helpful as they had great success in the studies. HOWEVER, although he is currently trying to get certified to administer these injections....insurance companies are not paying for the cost. Currently, insurance only covers Octreotide injections for people with Acromegaly. As such, I'd like to start a nationwide petition for coverage of these injections for IH patients. In fact, I'm starting first on FB...and speaking to Senator Schumer's office this week. AND...GOOD NEWS!!! A new form of Octreotide has been created negating the need to endure these injections three times a day. The new form is a stronger version of the drug requiring only one injection a day. (Although, Dr. Katz still recommends that patients do the 3-a-day regimen for the first month to build up a tolerance before taking the stronger version!) Then Katz and I discussed the once discussed and continuing clear nasal drainage when my pressures are high. He believes that I have CSF Rhinorrhea and sent me straight down to see Dr. Das (an Otolaryngology Surgeon who specializes in treating this condition.)
After examination by Dr. Das, he stated undeniably without a shadow of a doubt, that indeed I have CSF Rhinorrhea. He believes the hole is in my temporal lobe, but, as I had been sitting around waiting in Dr's. offices all day and mostly at rest, my pressures weren't high and therefore my leak was harder to see on CAT scan. Until, he can locate the hole he can't take me in for surgery to repair it. He said that if left unrepaired I could develop a very severe form of meningitis and die. Sooooo...he gave me some sample tubes to bring back with me in hopes that I can catch 2 ml. of this drainage, put it on ice, and send it to him. He saw the CSF leakage high in my sinus cavity with a scope, but, without surgery he couldn't sample it as it was too high, and the sample was too small. But, he said "It's definitely CSF." He wants me to have several vaccinations to increase my immunity against meningitis. He stated that the only other way to make this better is to have a shunt revision. He said, "Your shunt isn't working and Dr. McGregor needs to give you a new one. The problem is that unless you have an infection or unless your shunt stops working completely he won't revise it." He said, "Shunt surgeries pay very little to the NS's who do them, but, their risk is huge...so....they don't like to do these surgeries until they absolutely have to."
After my appointment with Dr. Das, I called Dr. McGregor to see what he thinks about all this, but, his secretary...instead of getting McGregor on the phone....said I needed to reschedule a new appt. with him. I LIVE IN NY!!!! So, now, I'm back home.....and I'm really no better off than when I left except I have more information.
So that's what's up....
MM3
And, I meant to say that Katz said my weight loss "won't" make that big of a difference for me...although it may help other IH patients.(Sorry)
SUNY Downstate
Brooklyn, NY
They are a teaching hospital but maybe closer to home? Intersting how things are done as a last resort due to lack of profit for the Dr forgetting about the patients quality of life. Get some rest I'm sure it was a long trip.
I wonder if Dr Katz knows about this doc in Wyoming who is giving Octreotide ? Don't know if you saw my post but you could look back on my previous posts ...also ..do you know Christine Delke on FB ?? She just finished her Octreotide treatment .
I have just completed my Octreotide treatment as of October 18, 2010. I am now IH symptom free because of it. All of the complications I had from IH, such as failing organs, loss of sight, memory problems, nausea, vomiting, Pressure headaches, tinnitus, etc. are all in remission. My organs are functioning within normal range and I have 20/30 vision in my left eye that used to have no sight, and I was considered legally blind in that eye. This is amazing.
My medical provider wasn't sure about this drug, but researched it and spoke to my cardiologist as well as a oncologist about this drug. It was determined by all that it was worth a shot because my condition was deteriorating rapidly, and I had tried everything with no success. I had nothing to loose and only gain. This was a difficult decision for all, but I was willing to take a chance tho, not only for myself, but to help other fellow IHer's. Either way I would have info to share on this new treatment. What has made it difficult is that there has never been a 2nd blind study done. We were going in blind ourselves on this. But in the end it was the best decision I and my doctors made. I am the 1st person in the USA to try and finish treatment as well as be successful with no further IH symptoms, and some of my medical issues reversed. Many are opposed to me and my choice to take the octreotide without a 2nd blind study and I have been verbally attacked, and some have tried to cause further problems for myself and even my provider, yet again this was my personal decision. If I hadn't it was predicted that I would not be alive today.
I live in Wyoming were my general medical provider does as well. She won't just prescribe octreotide as there are many factors to this. She has agreed to see others who have IH (documented cases) and only after reviewing their medical records and speaking to a few other docs will make the determination of whether octreotide could be of benefit. A lot of this is based of of ones IH but other medical problems as well. If you are still interested in contacting her and are willing to come to Cheyenne, WY, then I will speak to her and share your info with her and visa versa. Please let e know if this would be ok, and them email me your info as well.
Thank you and if I can help yu any further please let me know.
I'm just wondering if this Dr. in Wyoming is participating in a study of some sort and therefore, can give Octreotide as part of his/her research? I don't know. I'm not sure why the problem exists...all I know is that it does.
I'm glad my post has helped some of you gain a better understanding, not only of what I'm going through, but, as to what you might be dealing with as well. Every time I post, my truest wish is that someone else might learn something new. This time, at least, hopefully I've succeeded.
MM3