View Full Version : Is spinal tap really necessary
My mom is going to see an ALS specialist with a dx of ALS from her neurologist. He did all of the tests that are listed in a book I have about Motor Neuron Diseases except a tap. My poor mom has been through the wringer and I wonder what they could possibly find in a tap that would tip the scales away from and ALS diagnosis. She seems to have a textbook case of bulbar ALS. She's very afraid of a tap (heard stories that it's very, very painful). So, in your opinion, do you think it's necessary with all the other tests pointing directly at ALS?
Mary Helen Barr
07-02-2007, 10:43 PM
I don't know how necessary a spinal tap is, or what they look for. My father was participating in an ALS study, and had many spinal taps for it, and he didn't think it was painful at all. I actually watched the last one, because I kind of had to hold him in position for it, and it was hard for me to watch, but it didn't bother him at all. With all the things you have to worry about, try not to worry about the spinal tap. I suppose you could refuse it if you aren't satisfied with the doctor's reason for it.
I did not have a spinal tap. Seems like that would make more sense to do if symptoms were legs onset - but I'm no doctor.
Liz
CindyM
07-03-2007, 06:26 AM
My tap was painless but I've heard differently from others. The secret seems to be in laying still for an hour or so afterwards and taking it easy the next day. If your Mom has the tap make sure she takes it easy afterwards. Cindy
Because there is no specific test for ALS, many tests are done to exclude other conditions. The spinal tap is one of those tests. I didn't find it a bad experience and Cindy is right about lying down for a while afterwards and taking it easy for the rest of the day.It helps towards not getting a headache after the test is done.
Best wishes
Jean
I was always afraid from doing the spinal tap, even a friend of mine went with me to the hospital but it was not painful at all and then the Neurologist told me that the percentage of having a headache afterwards is 10% only and if so it is good to lay down on my back and to drink lots of water.
Later on that day I went to a restaurant and I couldn't eat because of a horrible weird headache, so I went back home and laid down for 5 days. It was a horrible week.
But I advice you to go for it as long as it may help them ruling other diseases
Omar
bdyle
07-03-2007, 06:46 PM
I agree with Cindy, I had the spinal tap done and felt only a little sting. Later that night I had a slight headache and after that no more problems.
A spinal tap is very important during a workup involving neurological symptoms. It can show several different disorders and many of which can be treated. These disorders can mimic als. It may be uncomfortable for a short time, but that is well worth getting a diagnosis other than als, which is possible. Check out this site on spinal taps. It details quite a few disorders that can be diagnosed from the study, all of which can mimic als.
http://www.nlm.nih.gov/medlineplus/ency/article/003428.htm
The actual tap takes maybe half an hour then you should lay still for at least an hour and take it real easy for the next day. No lifting, exercising or bike riding etc. If you do get a headache , Tylenol helps.
AL.
Kewanee
07-06-2007, 01:33 PM
My mom is going to see an ALS specialist with a dx of ALS from her neurologist. He did all of the tests that are listed in a book I have about Motor Neuron Diseases except a tap. My poor mom has been through the wringer and I wonder what they could possibly find in a tap that would tip the scales away from and ALS diagnosis. She seems to have a textbook case of bulbar ALS. She's very afraid of a tap (heard stories that it's very, very painful). So, in your opinion, do you think it's necessary with all the other tests pointing directly at ALS?
I just had a person that represents ALS in my area call and told me that the reason for getting EMG's ect. to get a firm diagnosis even tho they feel sure that it's ALS....is for insurance purposes. Yep. So certain things that may be needed, say equip. won't be refused because of not having the diagnosis firmly in print.
We did talk about two opinions who thought ALS may do it. Another good Neuro. who thinks yes. may be all that is needed?
I'm so sorry. I'm wondering about my mom right now.
Kewanee
midwestgirl
07-07-2007, 11:34 AM
My mother has never had a spinal tap, so this post has gotten me thinking - how important to have a spinal tap if there is already an ALS dx? My mother was first dx with foot drop, currently in a wheelchair with neither leg functioning well. The ALS dx came when mom started with the speech slurring and swallowing problems and the neuro did an EMG, which showed positive for ALS. The last visit she had quivering in her arms, but so far great arm strength, and breathing is fine.
I don't want to put her through unneccessary tests, especially is they may be uncomfortable. It seems like a spinal tap is done mainly in patients without an ALS dx, or questionable symptoms. Thanks for your thoughts!
patricia1
07-08-2007, 03:41 PM
Hi If she were my mom with a DX of ALS I would not get a spinal tap.It is no big deal But whats the point. I had one because I had normal EMGS MRI and blood test with just slurred speech So they were looking for infection, Lymes and other tick diseases . I am sure it will only stress out your mom. The doctors are only CTA if you know what I mean. I prays to mom Pat
CindyM
07-09-2007, 05:42 AM
You know Pat, I think I agree with you. The poor lady has enough on her mind at this point. Good point. Cindy
midwestgirl
07-09-2007, 02:45 PM
Patricia and Cindy,
Thank you for your opinion. I really didn't think a spinal tap would be necessary, but I certainly wouldn't want to NOT do something that should be done. This disease is so crazy - everyone presents so differently. Every once in a while I get a "what if" feeling - what if it isn't ALS, and there was a test that should have been done, and there was a treatment that wasn't done!
Mom has classic ALS symptoms BUT so many diseases mimic ALS, I just want to do everything possible for her. We all just have to be good advocates for our loved ones - and ourselves!
patricia1
07-10-2007, 09:48 AM
Hi annamarie Sorry you had a hard time Its so unusual to get side effects, Lets hope it was worth it. Hope your get answers. I notice every test I had was a waste of time.MY Dx came from a precess of eliminations. No tests were positive. It was all clinical. I wish you luck. PAt
Saubier
07-12-2007, 01:32 PM
CCOX,
I refused the spinal tap because the neuro was quite sure I had ALS. The tap would be grasping at straws. I said go ahead and treat me for what you think the tap might show, and if I don't get better we know it wasn't that.
Pappy
patricia1
07-12-2007, 04:11 PM
Glad you feel better What is a blood patch When I had my spinal tap I investigated the doctor to see how many he did.It should be done by a radiologist Sorry you had someone practice on you Take care feel better pat
saska
07-13-2007, 08:02 AM
Hi Annmarie, I'm sorry to read you're one step closer to ALS:( . Best wishes, Sharon
jimercat
07-14-2007, 05:55 PM
annmarie,
unbelievable that you had to be a guinea pig for a resident! Pretty scary!!!
Sorry youare having difficulties.
CJ
Icanmanz
07-14-2007, 10:29 PM
Hi, annmarie, I just joined this forum a little bit ago. I wish I had joined it sooner, but I was busy with my son's illness. My son had ALS. I just lost him on June 3, 2007. Let me tell you, it was a very, very sad experience. My son was 38 when he passed, he was 15 days shy of his 39th birthday. Have you been dx with ALS? I still feel like my son is just away, and feel like I'll be seeing him coming home! I will be praying for you. We live in Houston, Texas. Hope I'll be hearing from you. God bless!
CindyM
07-15-2007, 11:34 AM
Hello Icanmanz. Welcome to our fourm. I am sorry to hear about your son. A parent'sworse nightmare to outlive their offspring! There are many CALS (persons who are caring for or did take care of someone who has ALS) on this forum and everyone is more than willing to share experiences. Did your son have children? How is the rest of the famiy doing? Write and tell us more when you feel like it! Cindy
jimercat
07-15-2007, 11:52 AM
Hi annmarie,
Physically my husband is doing quite well. We went to the clinic Friday. They consider him somewhat stable. A little more problems with speech and swallowing/drooling. And he can't lift his left thumb. His energy level is way down. But having been diagnosed for almost a year I am thankful his progression hasn't been faster. Mentally he is suffering because his company has dragged their feet about disability and we are living on savings. It is terrible that PAls have to go thru the disease process not knowing what may not work when they wake up in the morning - but to have to deal with people that are so insensitive and have no inkling of ALS is torture. But we will survive.
(and yes his profile is on patients like me - you were right- that's him)
...
Ican,
Terribly sorry you lost your son. Did he have kids? We have a 6 year old. My husband and I are both from Texas.
CJ
patricia1
07-15-2007, 03:13 PM
Hi annmarie,
Physically my husband is doing quite well. We went to the clinic Friday. They consider him somewhat stable. A little more problems with speech and swallowing/drooling. And he can't lift his left thumb. His energy level is way down. But having been diagnosed for almost a year I am thankful his progression hasn't been faster. Mentally he is suffering because his company has dragged their feet about disability and we are living on savings. It is terrible that PAls have to go thru the disease process not knowing what may not work when they wake up in the morning - but to have to deal with people that are so insensitive and have no inkling of ALS is torture. But we will survive.
(and yes his profile is on patients like me - you were right- that's him)
...
Ican,
Terribly sorry you lost your son. Did he have kids? We have a 6 year old. My husband and I are both from Texas.
CJ
Disability should have paid in one month with a dx of ALS make sure he get all back disability they didnt pay Get a disability lawyer if you have to I hate when people are taken advantage of.God bless pat.
Icanmanz
07-15-2007, 05:02 PM
Hello Icanmanz. Welcome to our fourm. I am sorry to hear about your son. A parent'sworse nightmare to outlive their offspring! There are many CALS (persons who are caring for or did take care of someone who has ALS) on this forum and everyone is more than willing to share experiences. Did your son have children? How is the rest of the famiy doing? Write and tell us more when you feel like it! Cindy
Hi Cindy, thanks for replying. You asked me if my son had children, yes. His youngest is 7, and the oldest is a girl, 18 yrs old. I wish I had found this forum when my son's obit was still up, but they removed it on July 7th. He was a very handsome young man. My son was so special to me, and still is. I still have another son, he is 36 yrs old. My son that is still living named Shannon, he took it pretty hard when his brother passed. We all did, but we also knew that he wasn't going to suffer anymore! I only know is that my baby is in Heaven with his Heavely Father. I still miss him. It was one of God's plans and I have to respect that. Cindy who has als in your family, and where do you live? We live in Houston.
jimercat
07-15-2007, 05:05 PM
Thanks Pat and annmarie. As of Friday he was approved, but we have another issue about his pay, blah blah blah. Really sick of it.
Fortunately there is a group in Atlanta that provides free legal service to the poor and disabled. I've already spoken to an attorney there, as recommended by Emory. He said if we take them to court, it could be two years before it was heard and most likely they would end up doing the right thing and the judge would dismiss the case and the fines against the company. And we live in America...where's the justice?
Sorry a little down.
cj
Icanmanz
07-15-2007, 05:25 PM
Hi annmarie,
Physically my husband is doing quite well. We went to the clinic Friday. They consider him somewhat stable. A little more problems with speech and swallowing/drooling. And he can't lift his left thumb. His energy level is way down. But having been diagnosed for almost a year I am thankful his progression hasn't been faster. Mentally he is suffering because his company has dragged their feet about disability and we are living on savings. It is terrible that PAls have to go thru the disease process not knowing what may not work when they wake up in the morning - but to have to deal with people that are so insensitive and have no inkling of ALS is torture. But we will survive.
(and yes his profile is on patients like me - you were right- that's him)
...
Ican,
Terribly sorry you lost your son. Did he have kids? We have a 6 year old. My husband and I are both from Texas.
CJ
Thank you jimercat! So sorry to hear about your husband. May God bless you guys. My son was dx on March 29, 2006, bless his soul, 15 months later he was gone. I really thought that he was going to be with us longer at least another 6 mos to a year, but his death sneaked up on us, and it almost killed me, because I was not expecting it then. My angel died at home, on a Sunday (june 3, 2007) at 5:50 pm. Part of me died when he passed. I never, in my wildest dream I thought that I was going to watch one of my children die! There is so much to say, but I really do not know where to begin. All I can say is may God bless you folks! What part of Texas are you from?
jimercat
07-15-2007, 05:57 PM
Hello Ican,
My husband was born in El Campo and lived in Bowie until his parents moved to Georgia. I am an Air Force Brat born in Witchata Falls. My Dad retired to Georgia.
That is really rough, I'm so sorry you lost your son so soon after diagnosis. I feel real fortunate my husband has done as well as he has. It's just so unpredictable.
My thoughts are with you.
CJ
Icanmanz
07-15-2007, 06:12 PM
Hello Ican,
My husband was born in El Campo and lived in Bowie until his parents moved to Georgia. I am an Air Force Brat born in Witchata Falls. My Dad retired to Georgia.
That is really rough, I'm so sorry you lost your son so soon after diagnosis. I feel real fortunate my husband has done as well as he has. It's just so unpredictable.
My thoughts are with you.
CJ
Wow, jimercat, El Campo!!! Small world! We are a stone's throw from El Campo, plus I have cousins in El Campo, they have been there for years and years. Your husband probably knows them. Ask him if the family name Cantu rings the bell. I have a cousin that lived there, he was a great runner in school, and still is. He moved to Sugarland. He still competes in these marathons. Wow again, small world!!! Hope I hear from you again!:)
jimercat
07-15-2007, 06:14 PM
Ican - will check with the in-laws, as husband was quite young when they moved.
CJ
Icanmanz
07-15-2007, 06:23 PM
Ican - will check with the in-laws, as husband was quite young when they moved.
CJ
Okay, jimercat. My cousin's name is Ino Cantu, he was one of the greatest runners, and still is. He had a brother that was a good runner too, I believe it was Eddie ir Freddie Cantu. The Cantus were a big family, their dad's name was Manuel. Let me know.
I am signing off for a while, my stomach is growling!! Lol! God bless. Did I read earlier that you guys have a website? Just wondering! I wanted one for my son in his memory, but unfortunately, I am not too computer savvy! Lol! I am lucky I was able to learn this much on my own. I did not even know how to turn it on when I first bought it.LOL Pure determination!!!!
Bye! God bless!!
