when we went to the memory center monday the dr suggested a spinal fluid test,because dh has never had one. i wonder if this is something painful of really necessary,although if it could give us some hope,i don't know what to do. i need to study up on it. jav
I'd wonder why it was needed. Has he had a traumatic head injury or a stroke? Our son had one when he was a baby after he'd had a stroke to see if there was blood in the spinal fluid. I haven't heard of anyone having one since. I believe it causes bad headaches but I'm not sure. My prayers are with you.
jav-a spinal tap is invasive and uncomfortable. Your husband will have to lie flat for several hours afterwarads. Will he be able to understand and comply. He may have a servere headache. You need to know specifically why they are doing the proceedure and what they will do with the results. Just because your husband hasn't had one before doesn't make much sense.
Spinal taps or lumbar punctures as they're referred to are used to help diagnose Alzheimer's. When DH was first diagnosed, the Dr. ordered one and sent it for a "Tau" test. I guess this is something new that can be requested. It is very accurate at getting the diagnosis. Unfortunately, the neurologist had never sent for this test and used the wrong kind of vial so the results were inconclusive (arrrrgh!) Apparently, if it's negative, the person still could have AD, but if it's positive, it proves pretty accurately that they have it. Maybe this is why your Doc ordered it for your DH?Anyways, spinal taps can be painful but it depends on who does it too. DH found it painful when the neuro did it, but later on when a Dr. did it for the drug trial, he said it was ok, no big deal.
jav, do you have a diagnosis? Are you comfortable with the diagnosis you have?
I've stopped all invasive testing for my husband. In fact, the cardiologist has stopped all testing period, including things that weren't a problem for my husband. You need to have a good reason to allow this test. Ask questions.
From what research I have done, the whole point of a spinal tap, is to try to find very early signs of AD. The hope is the newer medications will work better if AD is detected before symptoms appear. This tests is of little use if your LO already has clear signs of AD, or has already been diagnosed. This is one page I have bookmarked (there are many out there, just google) http://websites.afar.org/site/PageServer?pagename=IA_feat27
I have had a spinal tap, and I would not subject Lynn to one. My sister had to have a couple of these as well and STILL has trouble with back pain in that area 7 years later. It isn't a simple procedure, if your husband already has a diagnoses, I would consider refusing the test.
Could he just have the MRI and PET Scan and get the same diagnosis? I'm just asking because I know nothing about the spinal tap or what it shows compared to what the PET Scan shows. I know the PET scan is supposed to be 99% accurate in diagnosing AD now. I wouldn't want to subject my husband to a spinal tap.
I would ask the Dr. what the test will tell him if anything. Then ask the Dr. when he tells you what the test might tell, ask him what treatment and/or meds. he would then need to make improvements in his condition. The key word in these tests is "improvement". If you are not certain that the test is going to make any difference you might want to tell the Dr. you want to wait to think it over and/or not do the test. I would never let my DH have the test. This is a progressive condition with no known cure. I don't need anymore info. When I told my Dh's neuro that I had taken him to the VA for more tests, he said..."what a waste of time". "You know he has AD there is only a certain number of medsl we can give him and that's it." Of course, that is when I didn't understand AD like I do now.
Sid is in a drug trial - they are infusing him with antibodies that are supposed to attack the brain plaque. They asked us if we would allow a spinal tap as part of the process to determine the amount of antibodies that got into in his system. Considering he could be getting a placebo, I refused. I said they could do MRI's of his brain and test his cognition all they wanted, but I was not allowing him to be subjected to a spinal tap. He has enough phyiscal problems in addition to the AD, that he doesn't need any complications from a spinal tap.
They are pretty accurate now in making the AD diagnosis with MRI's, PET scans, blood tests, and cognitive tests. Just my opinion, but I wouldn't do the spinal tap.
In addition to what Nikki said, as far as I know, the diagnostic tests that are done with the spinal fluid are entirely experimental. There have not been any clinical trials to confirm that they are accurate.
I'm told that spinal taps are not nearly as uncomfortable or dangerous now as they used to be. But I was told this by people at the research center who were trying to convince me to enroll my husband in a study that required the spinal fluid to be sampled periodically. (I declined that particular opportunity.)
I'd be asking some very pointed questions, and I'd be double-checking ALL the answers, before I agreed to have my husband undergo a spinal tap.
My husband had all kinds of tests but none of the 5 Doctors we consulted asked about doing a spinal tap test. I had one once and it was pretty unconfortable.
My DH had the spinal tap and wasn't looking forward to it, but it was no problem. They treated him as they would for day surgery. He got a room, ride on gurney, lots of good pain meds, and even lunch. He had a great time actually. PatB
There is a lumbar puncture which isn't a spinal tap per se. Back when we first went to the neurologist, when he was trying to figure out what KIND of dementia, he asked to do the lumbar puncture and if that helped he would do a spinal tap. The idea is that as the brain shrinks (slightly, as part of normal aging) fluid accumulates. Draining that fluid, which may be pressing on the brain, may make things better. Normal Pressure Hydrocephalus. HEre's a link to an article:
http://tinyurl.com/64r2zt
This is what the doctor thought because of The Adams triad (gait impairment, dementia, and urinary incontinence) so I was willing to have that done. However, the CTs showed now improvement so he didn't pursue it. It is NOT an arduous ordeal; I think he had to lie still for less than an hour afterwards. The whole spinal tap would have been longer and would have had to happen repeatedly.
My DH had a lumbar drain in June, 2008. This was done under the supervision of a neurosurgeon. The drain was in for three days. Prior to the drain and during the drain, each day, he was evaluated (very clinically) by three physical therapists. The purpose of the drain was to determine if he might be suffering from NPH. The clinical evaluation showed a 40% improvement in his ability to walk and move his legs. He had very little pain while in the hospital with the drain. After the drain was removed, he had three stiches and I brought him home with home health services. We went back to the neurosurgeon for a follow-up apt. and he suggested a shunt to drain the fluid continuously. This drain is surgically placed in the head and the fluid is absorbed in the body and into the stomach. The Doc is a very well known surgeon and explained all the risks and possible benefits. There was NO improvement with memory before and during and after the drain. They did multiple variations of mini mental test. The Dr. explained that he could have NPH AND AD. Our primary physician who has seen my DH take a rapid decline over the past year said if there was a remote chance that the shunt would help, he would recommend it. A friend of mine has a husband who had a head injury 20 years ago and has had a shunt in his head for 20 years. She said it has never caused him any problems, and has done it's job well. On the MRI, accumulation of fluid shows up as enlarged ventricles which in turn causes severe walking problems. We discussed all this with our four kids, our Dr. and close friends. Everyone agrees that he should have the shunt put in. We are now awaiting a surgery date. The Dr. said after surgery he would need physical therapy.
My DH has no idea what this is all about. He just tells everyone he has "water on the brain" and he is going to have an operation to drain the water off.
Also, they sent the fluid to a lab for testing to make sure he didn't have meningitis or any other disease of the brain. They did not memtion confirming AD with the spinal fluid.
The three symptoms of NPH are gait problems, memory problems and incontinence. My DH has all three.
A lumbar puncture is the insertion of the needle and when spinal fluid is obtained, then it is called a spinal tap. There are many reasons to do them, draining fluid and decreasing CSF pressure indeed is one and can make a dramatic improvement. Medications can be given through them but I am not aware of any medications for AD that are given intrathecal. They are also used for diagnosing different types of dementia. There can be different types of cells in the CSF that can differentiate AD from something like Huntington's disease. It would be important to find out why he wants to do it. The PET SCAN is more sensitive and more specific for AD but is much more expensive. It may not be paid for by some insurance companies. They usually are safe but the pain is directly related to the expertise of the one doing the procedure, the headaches are common after and are not predictable. If he cannot give you a clear reason for it that will benefit your DH, you most certainly do not have to have it done.
Jayne, I'd been wondering how things were going with your husband, and what you'd decided. Do please keep us updated on how the surgery and physical therapy go.
My husband is doing OK, but has lots of problems walking, keeping balance, etc. He is still receiving out patient therapy in our home and we just recently decided to go ahead with the operation. By the way, even though the fluid was drained. once the drain is removed, it begins almost immediately to accumulate again. Right now, we are waiting for the surgeon to schedule him. The physical therapy has helped him keep his muscles active and he has made some slight improvements. I'll keep you updated as time goes by.
I would be thrilled to be inundated with questions...I am so tired of my family not allowing me to talk about AD, they don't want to think it is happening to their Father. I don't either, but if I don't talk I will go crazy, this site is a God-send for me...I may not be able to answer the questions but bring them on!
sandy D, go ahead and talk. At this point we have a couple of doctors, a scientist, some nurses and some just plain folks here. You never know who has the answers you need, but one thing all of us know, we know we all need to be able to talk. We need to say the unsayable. And even the unthinkable.
Thank you...I have been obsessed with reading all the comments..It has been wonderful. I have read so much of the literature but unfortunately the literature does not talk about the real life issues. Sometimes I worry that the diagnosis is not correct but then something happens and it is clear that it is. It is already so hard and I am just starting down the road. I admire each and everyone of you for your compassion, stamina and humor. I feel like I have found a haven that will allow me to survive this journey and come out of it alive. I feel like I hae stumbled onto a tribe of friends. Thanks so much!
>unfortunately the literature does not talk about the real life issues.
That's so true, Sandy. One thing that's lovely about being here is that no one is judged for what they say or feel, but you may find a certain bias against some attitudes of doctors - for example, the family doctor who says you need to get marriage counseling(!) or the neurologist who is so focussed on the AD patient as a specimen that he wants to poke it and see how it reacts rather than trying to help it or heaven forbid, its caregiver.
If you haven't read it yet, do read the "understanding the dementia experience" which is on the home page. That gives a lot of us insight we've been lacking.
sandy D my dil is an infection disease doc and I often get her opinions for us. Just as an aside-when she was in her residency at OSU she felt she had symptoms of MS. Everyone pooh poohed her as don't most residents suffer from the disease they are studying about. Unfortunately she was correct. When she became pregnant she had more "mothers" than anyone could ever need. I think they felt her labor and delivery (C section) was a group effort. Welcome to this wonderful group
Sandy, in addition to the Jennifer Ghent-Fuller article briegull mentioned, another wonderful resource that Starling brought to our attention is the Bigtree Murphy site -- loads of practical advice from a woman who cared for her AD husband. The site map is at:
thank you all for your input on the spinal fluid test. from what i understood from the dr,monday,the test would be to see if there was any bacteria or infection in the brain or spine. does that make any sense? i don't know. dh has not had this test done,but he has had cat, mri,pet done he has had the official dx of ad for about 18 months now. it started alot sooner than that. he is progressing so fast. today was an especially hard day. he just cried and cried most of the day and refused to take his meds. i finally got him calmed down and he took meds and ate but then he would start crying again. i gave him a xanex and he calmed down more. he was convinced they had done something to him at the memory center we went to monday. i kept telling him,no, and he kept saying" but thay had to have i am worse". i've got to really think hard on this spinal fluid test. if there is a chance they could find something and treat it,but if they just are wanting to do it because he hasn't had one,the answer is no.
It would be unusual to have meningitis ( infection of the membrane around the spinal cord and brain) without other evidence such as fever, seizures, appearing physically ill when you look at him. There are some rare viral causes that can be fatal and are slow but again, those are rare and he should be able to tell you he is looking specifically for those. If he is just looking for bacteria, it is not going to be there without the above symptoms and would have killed him by now anyway. The viral infections are not treatable so there may be no reason to do it other than to know.
Yes, it helps to have a doctor or two in the house. We also need a physiatrist and a neurologist. Do we have any of those? I'm sure they could help explain a lot of things and they could sure learn a lot from us.
dh has no fever of any of his other physical symotoms. i am not going to let them do this test. it is unfair for him to go through pain just to find "out"? dhs family are going to keep asking me,but i know what is best for him and they don't. end of story! i am so protective of him. i won't let any one hurt him physically or mentally. i love him so,and all i can do for him is let him know i am here to take care of him. jav
Another, Cargiver's Unite! Testing should be event driven. Any testing needs to be for the specific purpose of improving the LO's situation. Lab for a UTI to get the correct med to treat it--go for it. MRI and/or CT if a TIA or Stroke are being dx and/or treated--ditto. However, if our LO won't be able to benefit from the results, and maybe also will have trouble getting through the testing procedure, why do it? Unnecessary grief. I found another Dr. when this became an additional issue with the Dr. we had. We stand for our LO and if the consultants can't justify their proposed testing adequately, we can say NO! even if we aren't medical professionals. Same goes for those of us who are medical professionals in other specialties. We are the voice and authority for our LO. So there!
Hank was willing to have the spinal tap for research. The doctor was an expert and there were no side effects. We did stay in Portland overnight just in case he had one of those awful headaches that can occur. It didn't benefit him, but hopefully they are learning something else for the future. Joan, I think the trial your husband is in is the one we signed on for. The first sesson eliminated us - which is why we sold our house and started traveling and enjoying something besides trips to OHSU.
My wife's neurologist wants her to have a Lumbar Puncture and after reading the posts here I'm still not sure. My wife's family keeps after me thinking that they may find that it is not AD. Again, after reading everything here I have my doubts, so what is the point of putting her through it? I know that she will NOT want to do it as she is sick of doctors and never wants to see one again. I want to do what is right for my wife and I'm not sure she should have this if there are no positive benefits, but I could be wrong. Advice?
What else does the doctor think it could be if not AD? There are other ways to diagnose illnesses that are not AD - blood tests; MRI's; PET scans; and I'm sure others. I'd ask the doctor a lot of questions before I agreed to the Lumbar Puncture.
I spoke to his office yesterday and asked a number of questions as to why the LP needs to be done. I remember him speaking about inflammation. This neurologist is from Columbia University and is wonderful. He does research in AD, so it makes me wonder if he is just poking around for research sake. I read Sandy's posts above, and now I'm starting to question the reasons here. I'll let you know what he says.
When we first took DH in to neuro he also suggested a LP to rule out all the listed above. this was after they MRI/PET tests and said Vascular dementia and the signs of ministrokes were evident. I did not want to subject DH to the LP since the diagnosis was already in and the end results of any dementia are the same. divvi
As far as I'm concerned, there would only be two reasons to agree to my husband having lumbar puncture ... if there were a possibility that the dementia might be due to something reversible (like the NPH we were talking about elsewhere) or if the resulting diagnosis could make a significant difference in the type of medicine that should be prescribed.
Having my wife in the hospital for 17 days recently, and having every test in every department, allow these observations. Depending on where your LO is in the AD progression, a regular day can be kind of scary. Add hospital environment and pain, the confusion and fear ramps up a little. Then the problems start. (I am not a medical pro, this is just my impression)
There are three levels of numbing the area, general (a shot to numb the area of the punture), sedation (kind of a twilight, not really knocked out, but not much feeling either) and anthestia (knocked out). Each has a higher risk, because after the procedure you have to come out of it.
In the following narrative, PE=Painful Event To start the procedure, a transporter person shows up with a gurney and its off the bed onto the gurney (PE); down the hall, bump onto the elevator (PE); bump off the elevator (PE); off the gurney on to a table (PE). Now with a lumbar puncture(PE), it is important to lay still. Strangers, dressed in strange clothes are telling your loved one to lay still while they jab a needle into her spine. Of course she is freaking out and has no ability to follow instructions, so now she is "non-compliant". Reverse the trip with each of its associated PEs. We still need the lumbar puncture, so let's reschedule it with sedation. You do the whole process over again.
It is a similar sequence for the bone biopsy, CAT scan chest, CAT scan stomach, various MRIs, and ultrasounds. Every so often during the seven days of this, she looks into your eyes. The only good thing about this whole process is that she has no recollection of any of it. You on the other hand get to live it over and over. The results of all these tests are "no problem" or something that you did not want to know in the first place.
actually, my husband had one, in the doctor's office. He agreed to it, it was early on in the diagnostic process. The point is that if there is extra fluid in the spinal column, it can be pressing on the brain and causing dementia. Draining it may help alleviate symptoms, and if it works it indicates that they do not have AZ.
It's the equivalent of what (some of us) had when we had spinal blocks while giving birth. If it had worked, he would have been WELL for a period. THAT would be worth it. If it does work, they insert a shunt to drain fluid from the brain. It's called "benign hydrocephaly" - "water on the brain". Years ago when kids were born with hydrocephaly they were basically idiots. The son of a neighbor was an early recipient of a shunt, as a child, and is now a 50 year old NYC lawyer, normal in every way (if NYC lawyers can be considered normal ;-) ) So we weren't scared of having it done, and my husband wasn't far along.
To do it to someone who can't understand what's going on is really cruel. Guy, do a search - I think - on "benign neglect" here. Most of us agree that we just won't let doctors do everything they want to to our spouses. THEY do not know best. In a great many instances, those of us who live with people know what is best for them.
Unfortunately, the lumbar puncture didn't work for my husband and we haven't repeated it..
briegull I think your point is well taken. When your husband had his Lumbar Puncture, you were given a good reason for it, and he had pretty good comprehension about it. The fact that it didn't work was still good informtion at that point and justifies chosing not to do it again.
You said it well. "...those of us who live with people know what is best for them." Ask questions and get answers (not obfuscation) until you are satisfied of a distinct benefit from any proposed precedure before you agree to it. Doing a test because you can or because it has been x number of months since the last one, or because a lot of AD patients have this added problem so your LO might have it too, are NOT good reasons for testing in my book. If there has been a new event, or new symptoms present themselves, or use of a certain med. requires monitoring, are reasons to OK a test. If there is true potential for stabilizing or improving the LOs condition, it would be worth considering dependent on the LOs condition to handle the testing and on the invasivness/pain/stress of the testing.
With my handicap, Charcot-Marie-Tooth, diagnosis can be made through family history, symptoms, EMGs and in many cases DNA testing. Some have been asked to allow muscle biopsies. Everything I've seen so far, shows the problem is in the myelin and/or the nerves or the combination thereof, affecting the peripheral muscle system. When the nerves stop telling the muscles to work, they stop working and eventually atrophy. Looking at biopsies of the muscles, isn't going to tell much about CMT.
While test were being done before any diagnoses, my husband had a Lumbar Puncture in the Neurologist office....she was qualified to perform the procedure. He had with no problems. At that time we thought it was necessary to help with diagnoses, however, I would not allow one now.
My DH had a spinal drain back in Aug. for the purpose of diagosis for NPH. See my post of Aug. 21st. He had surgery 10-3-08 by a very well know neurosurgeon who did the evaluation. The surgery is a shunt in his head that drains fluid internally, continually. The surgery took an hour and a half and he came right out of the anethetic. His recovery in the hospital was 6 days. He developed blood clots in his legs, for which another surgical procedure was done. A Tulip Vena Cava Filter was inserted into the groin area to keep the blood clots from traveling to upper part of body. That procedure only took 10 minutes and he was not put out, only sedated and numbed. He is currently in a rehabilitation facility getting intensive physical therapy. HE IS MAKING DRAMATIC IMPROVEMENT with walking, some noticable improvement with memory and some improvement with incontinence. The neurosurgeon said after reviewing all his records prior to surgery that he could have NPH AND AD. Although somewhat confused, he was not afraid while in the hospital, he had me and other family with him most of the time and he has always been a strong man of faith. It's almost like he forgot to be afraid, and as long as I was there to give his hugs and kisses and prayers, he just was able to relax and put his faith in God to work. Our big, big problem prior to surgery was my ongoing ability to care for him. He could barely walk or transfer from wheelchair to bed or chair. He is a big man and I was seriously considering the fact that I could not go on this way for much longer. I hired a caregiver, the kids also helped, we had home health care, but his daily care caused me to be very close to burn-out, and I was considering a nursing home. This surgery has given us a new lease on life. When he gets finished with rehab (about another 30 days), he will hopefully be able to walk much, much better with a walker or perhaps without one. The idea of him being much, much more alert and self sufficient is beyond what words I can write.
If anyone has any questions that I have not answered, or if they want the name of our GREAT neurosurgeon, I will be happy to give it to you.
Jayne, it is so wonderful your DH is responding so well to his treatment. Your DH case illustrates why it is so important to find a good doctor who will try to determine whether dementia/memory symptoms are caused or exacerbated by a treatable condition like NPH. It sounds like your doctor was an answer to many prayers.
Well I just read this whole thread and saw my own comments back on 10-16-08 and we still have not gotten the appointment for the LP.
My wife had an MRI, PET SCAN, EEG and the neuropsych tests. The diag was AD. She also had a CT scan when she was in the ER back in August, and it was thought by the staff, that she had NPH. Then our primary doctor, and neuro said it wasn't. We sent all the scans and reports to a neuro at Colulmbia and he called and said, nope not NPH, it's AD. Fast-forward the neuro at columbia does about an hour exam with my wife, and says yes, it's AD.
So again, what the hec would a LP be for? From what I've read above, I still don't get it! I suppose I'll have it done, if he insists, but my god can they not be clear??? Why do I think that so many times when I'm with a doctor that he/she is trying to snow me?? guy PS still venting!
If you are still holding out hope for a better diagnosis I would probally go for it. They did not do a PET scan on my husband. How do you ever know for sure if diagnosis is right? I kept hoping diagnosis would be changed and then finally decided I had better accept what we had with 4 Neuros saying AD and Vascular Dementia. But, if one of the Neuro's called saying they want to do more testing, I would still go for it. What do we have better than HOPE.