Anybody with Axonal varient GBS?
AnonymousFebruary 24, 2007 at 5:41 am
I was told yesterday after my 4th NCV that I have the axonal varient of GBS. He said this is really rare and usually seen in China. He has seen only one other case of this varient before. Apparently it is a longer recovery time since your body has to regenerate/repair the actual nerve. He told me recovery may take up to 6 months. My mylin was normal on the NCV. He said the body is able to repair mylin damage quickly but slower for nerve damage. He is giving me another round of ivig since I had worsening symptoms 4 weeks from my 1st tx. I did had good initial response to 1st round(1/13/07). Does anyone have and experience with this varient? How long did it take you to recover? He is thinking about sending me to the Mayo clinic if I don’t have improvement with the 2nd round of ivig. Does anybody know who is the best neurologist in the US for GBS? Any experience with Mayo? Dr. Shawn
AnonymousFebruary 24, 2007 at 10:24 am
Hi Dr. Shawn: I am not sure what this doctor is talking about. I had axonal damage as well-in fact, my neuro said anyone who has had significant paralysis probably has-and it has been almost two years of little healing at that level of nerve damage. I am not sure if that is what he is referring to or if there is another variant, but I do know the more axonal damage the slower the recovery. Perhaps others on the forum know what he is talking about. Has he had much experience with GBS? Jeff
AnonymousFebruary 24, 2007 at 12:51 pm
Jeff, That makes sense that it is a matter of severity. They did let me go 6 days before the ivig and then improved rapidly then now improvement tapered off and some days going backwards. My neuro said he has about 3 cases a year. He had a fatality last year- young girl with 2 small children presented to his office unable to swallow. She had been miss Dx 3 visits to a local rural ER. He has had 3 other cases this year already. I was not seen by this neuro 1st- unfortunitely another neuro saw me 1st did not believe me when I told him my symptoms and even asked him if it could be GBS- he said “No” just Migraines. My question is to get feed back from you and others as to how long it took(in general) to get back to normal or at least back able to work. Is 6 months realistic? Two years seems daunting- I could loose my practice/career. Not to mention very hard to take care of my children. To look so normal my limitations are extreme. Dr. Shawn
AnonymousFebruary 24, 2007 at 12:59 pm
Hi Dr. Shawn: Here is a little more I found:
Acute motor sensory axonal neuropathy (AMSAN) is similar to AMAN but also affects sensory nerves with severe axonal damage. Recovery is slow and often incomplete.
I guess he is referring to this form. I believe diagnosis is based on severity of axonal damage. I wonder if you ever mentioned on the forum how effected you were-were you vented-did you have complete paralysis, etc. I was completely paralyzed below the waist and effected in my hands, so all of my axonal damage was of course in the legs, though my hands still bother me a lot. I am almost two years out. I also made a very rapid recovery, then 6months out seemed to slip back. Because I still had some reflexes in my knees no cidp diagnosis was made. I went back to work part time 5 months after onset and, honestly, have not been able to work more than I could back then. I am working less than half of what I did before onset. I cannot walk more than 10-15 minutes without leg fatigue and increased pain and I am in pain almost all the time. Like you I have low grade fevers when tired. On the other side of the coin, I know a guy who was completely paralyzed, vented, in a wheel chair and told he would never walk again because of axonal damage and he now walks without a cane and has little or no pain. It took him five years to recover. So there really are no safe predictions. My neurologist was considered the expert of GBS in Denver and saw a total of 9 cases in his career. Still pretty rare. Hope this helps some. Jeff
AnonymousFebruary 24, 2007 at 1:52 pm
Hi Dr. Shawn,
Thought I’d butt in on this conversation. I’m almost 4 months out from my IVIG. At discharge I was rarin’ to go and progressed great over the next couple of weeks. My Neuro had sent me to out-patient rehab where I was given several sets of exercises to do there and at home. Before long I began to drop out of the exercising because they were draining my energy and causing pain in my legs (I was affected below the waist). at my last appointment I told him that his original forcast that I’d be recovering quickly was not holding and that I felt that I had axonal damage. He appeared to agree and said that regeneration of each nerve was at the rate of a millimeter a day! He never said that I had a variant of GBS.
At any rate, I do try to do some exercising, but my legs are as numb as ever and I sometimes get excrutiating pain in my hip joints and that peculiar “hot” feeling on the soles of my feet. I’ll probably see my Neuro by the end f the month and I’ll broach this subject of a variation. Meanwhile (he is persistent) he’s sending me to a Rehab doctor rather than a physical therapist.
Sounds to me like we’re in the same boat. I’ll keep in touch.
AnonymousFebruary 24, 2007 at 4:40 pm
There are true varients of GBS that are axonal. Axonal GBS can be sensory, motor, or a combination of motor/sensory. To make it even more confusing, most people who have any kind of GBS have at least some axonal damage.
What you are describing does sound like an axonal varient, instead of just some residual axonal damage, expecially since you have had several nerve conduction studies showing no demylination. Yes, it’s rare, and often has a conservative prognosis.
The nerves in this case do heal more slowly than just the myelin. Gerry is correct in saying the nerves heal at the rate of approx. 1mm per month. The healing starts at the damaged points that are farthest from the spine.
Sometimes the the nerves can’t repair themselves, but they can recruit healthy adjacent nerve axons (like sprouts) to assist with their work. This means that the the muscles are able to work, often with the same strength as pre-GBS, but since the nerves controling them are doing double duty, you don’t have the endurance you had pre-GBS.
I really understand how you must be feeling about this. I’m a professional also, and when I learned I had GBS, I was very worried about recovery, especially since I have my own business too.
Two years sounds like forever, and indeed it can take that long or more to reach recovery. There are some who are fortunate enough to be able to go back to work sooner. Many fall somewhere between, and most of us usually end up with some residual problems.
From what you have written, it sounds like you are making a good recovery, so far, although probably not as quickly as you wish. There is, unfortunately, nothing that will speed the healing. IVig is intended to stop the damage, but does no good after the attack has stopped. You can, however, [U]slow[/U] the healing, or even cause a setback, by overworking. Rest, rest, rest is the best thing you can do for your body right now. Hard to do when you have a private practice and children.
I would strongly suggest that you apply for disability income (either partial or full), if you have a private policy. This will help to cover your income while you are getting well. If you are able to go back to work, you can always stop the disability. It usually takes quite awhile to get this process completed, so don’t delay.
This advice is probably not what you would like to hear – when I got the same advice, I delayed and wished I had applied sooner. It’s hard to accept that your limitations might be long term, or even permanent, but it’s better to cover yourself.
Also, private companies may ask for an evaluation by one of their physicians. I suggest that you read your policy, and get yourself evaluated by a private physician who can attest to your level of disability, before the insurance company requests this evaluation. It will save time, and increase your chances of being approved.
AnonymousFebruary 24, 2007 at 5:12 pm
My husband had motor/sensory axonal damage. He couldn’t pick up a dime 6 years later if his life depended on it. He had many problems using his fine motor coordination.There were many things he couldn’t do with his hands and fingers. His legs still gave out on him until he passed away.. he could never return to work. He had good days and bad days. Everyone’s degree of nerve damage is so different and so hard to compare.
AnonymousFebruary 24, 2007 at 6:02 pm
One of the first things I asked Nate’s neuro after Nate was put into the convalescent hospital was if he had actual nerve damage.
He told me Nate did not just have Myelin damamge but that he also has Axonal Damage (AMSAN). His is mostly in his legs but his hands still give him lots of tingling and pain 14mos out. His dexterity is shot even now also. He has a really hard time typing or doing anything that requires using his fingers like writing. His fingers also shake a lot.
I got a good explanation from the following website as to the difference between Myelin Damage and Axonal damage.
It helped me to get a more realistic expectation as to quick or slow recovery.
Its not always something you want to hear, but it can help to have a more clear idea at least.
Here’s the website. You will need to cut and paste. Look under the section called Clinical Variants.
AnonymousFebruary 24, 2007 at 6:14 pm
Wow, Thanks for all the response! I believe he called it ASMAN. I was affected arms/legs, L eye droop, R face spasms, neck/upper back spasms, numb tongue/taste, paresthesias up to above waist. Now just leg /arm weakness, with some ataxia. Legs more affected and R foot droop when tired(daily). Now paresthesias just hands/feet/occasional nose. I was non-ambulatory for just a few days, graduated to walker, and now on my own. Just limited endurance. No vent – thank God/fate/ivig. It was a close call-the morning I was being shipped out for plamaphoresis -I could move my feet and started to improve.
I just called to have my disability application forms to be sent. I have and overhead disability that will cover about 1/2 my present monthly overhead. I also has 2 profesional policies. The 1st will pay about 1/4 my salery. The second-I was changing to in Nov was in underwriting and I got accepted when I was in hospital. That policy probably will not pay- bad luck- in affect 10 days post my admission. I would pretty much have to sell my practice in order to survive financially if the second policy won’t hold-mainly because of overhead not loss of income. My husband has a good job in pharmaceuticals. My partners may work with me (short term)on some overhead reduction but 2 years- no. I’m going to take it day by day for now. I have about 5 weeks to figure this out. Maybe my body will rest/repair/miracle before then. That sounds of denial. I take it as hopeful optimisim. Dr. Shawn
AnonymousFebruary 24, 2007 at 6:39 pm
Natesamom, Great article. I think I’m AMAN since he said no sensory and it was common in China. He drew my blood last week to check the specific Antibody attack site to help with DX and prognosis. I also had double vision and face affected and he did not completly r/o MF. In the end it will probably not matter and it will be what it will be but prognosis is important to know now. I know 2 children that have had GBS-one with the MF varient. Whats the odds. Also the daycare provider at my sons daycare had it one week after me. There was 3 cases last year and 4 so far this year. No so rare in Jonesboro. Thanks for your help! Dr. Shawn
AnonymousFebruary 25, 2007 at 12:56 am
[B]Acute motor sensory axonal neuropathy (AMSAN)[/B]
Is what I was finally (secondarily) diagnosed with….
My neurologist did his nerve conduction tests, and then called in another neurologist that specialized in the tests to re-conduct them.
Their opinion (and the one of my neuro that he wanted confirmed) was AMSAN.
As I’ve said in some of my recent posts, I am “steadily” improving, at a pace somewhat slower than that of a snail…..but noticeable nevertheless….
My GBS was kicked off by a rare liver infection that they had MUCH trouble defeating….. Just before the end of my treatment I noticed numbness in my toes. We thought it was a reaction to meds.
By the next week I couldn’t walk, use my arms/hands, had double-vision, and speech was difficult. At the end of the first day in hospital I noticed my breathing was “off”. Fortunately it improved and within another 48 hours I was already showing general improvement.
IVIG was given for three days, starting my fourth day of hospitalization because I had asked them to wait a couple of says before doing a spinal tap….that was because I had one thirty years before and didn’t want a “repeat” of what I went through then….
I feel that the “medical establishment” likes to have neat “pigeon-holes” to classify things. This is not a bad thing, per se.
When our immune system goes nuts and attacks our own nerves, it’s “GBS”.
Exactly which nerves, which myelin, where, when, and how severe seems to be the basis for all the “categories” of GBS, for which each one has been given a name.
I feel that these classifications can be too limiting for the patient and doctor. The variations of effects, symptoms and prognosis for each individual with that person’s specific damage that can be noted with GBS don’t always fall into a neat pigeon-hole.
AnonymousFebruary 25, 2007 at 1:11 am
I dont think with GBS the text book recovery times can be taken as anything other than a ball park estimate … recovery times seems to vary so much from person to person and age, prior level of fitness etc dont seem to make much difference.
My doctors told me often the quicker the onset the quicker the recovery … i dont know if there is any real evidence of this but i know from reading others stories it is not unusual to hear of someone who has gone downhill very quickly and required vent etc that goes on to make an almost complete recovery whereas some people who were not as badly affected initially who take longer to recover and often suffer more residuals.
I think certain variants ie MF and AMAN tend to have a quicker recovery although i am not quite sure why.
having said all that, i would say i have had a very quick recovery – i went from perfectly normal to paralysed in a coma in 48 hours and spent 4 weeks in ICU, but then left hospital 3 weeks after getting out of ICU able to walk on my own and without needing any further PT or OT. I returned to work less than 6 months after getting GBS. I was totally independant probably 3 months after GBS but gave myself time to recover before going back to work. I think 3 months would be a very optimistic timeframe for recovery. Initially I was told anywhere from 3-24 months.
i dont mean to sound negative but i dont think there is anything to be gained by putting expectations on yourself. Unfortunately there is not a lot you can do to speed recovery up … you just have to do all the right things and heres the hardest part, have patience!
AnonymousFebruary 25, 2007 at 8:16 am
Montanasmum-interesting about the quickness of onset to speed of recovery. My onset was very slow, so slow they thought originally it was CIDP and I would say my recovery has been very slow. But, as has been said, it is all so individual it is hard to classify with any success. My neurologist discouraged me from doing any nerve studies once out of the hospital as it would tell us very little about recovery time. I suspect he didn’t want to discourage me either. One day at a time is the only way I know of to deal with recovery. Jeff
AnonymousFebruary 25, 2007 at 11:59 am
Your optimistic attitude is a great way to approach GBS. Glad you are getting the insurance process started. Hope you are able to work it out.
I believe in expecting the best and planning for the worst.
I totally agree with Ken-L about the classifications of GBS. In fact, my neurologist told me (and you are probably already aware) that neurological diseases/syndromes are really loose grouping of symtoms used to help doctors catergorize them, and there can be lots of overlap between them.
This makes dx both easier and more complicated.
I also agree with you that, in the end, it probably doesn’t really matter which form of GBS you have. Your body will recover at it’s own rate and in it’s own manner.
BTW – my last post was incorrect about something- the nerves heal from the most proximal area outwards, not the reverse. This information came from a newly published book (available through the GBSFI website) written by two neurologists who are on the board of directors for GBSFI. The book has excellent information and is recommended reading.
AnonymousFebruary 25, 2007 at 3:27 pm
I am very aware of just how lucky I am that my GBS was not worse.
From the beginning I have “fought” as hard as I can to do as much as I could. While in the hospital bed I kept trying to move anything that was affected, I got up during the day and walked the halls. I went to a fitness center as soon as I was able and used the machines to work out.
For me I was “taking it easy”…. But I continue to “push the envelope”, and again I know I’m lucky that I can. I could never take the advice of “just rest” even if it was better for me!
I have tried to not go too far. When the pain is really bad I remind myself it’s “only pain” (I have had a lot of practice with that before GBS) and I continue to do what I’m doing, at least until the pain gets so bad that I have to stop, collect myself, and then continue….
It seems that when I push myself it results in improvement. I keep asking my nerves to do more, my muscles to do more, my mind to allow me to do more.
I was nearly disabled in a car wreck and spent a year rehabilitating after back surgery. My first day heading back to work I was in another wreck. That one “did me in” and I was then officially [U]disabled[/U]…… Another surgery was ruled out. (Neither of the accidents were my fault.)
I’ve was taking morphine/dilaudid for years before the GBS just to be able to function. And unless I couldn’t get up I have not let it stop me from doing as much as I can.
Something in my head just keeps saying, “This won’t beat me. I won’t allow this to beat me.”
AnonymousFebruary 26, 2007 at 6:27 pm
I want to thank everybody for their response. I may be a little better today. My husband says my gait seems better and my foot drop is better. I have 3 more Tx with ivig. I may be in the SIDP(lasting up to 8 weeks). I thank everybody for their support! It will be a long recovery but I have hope. Dr. Shawn
AnonymousFebruary 27, 2007 at 2:42 pm
I think it’s important to know that there are various degrees of recovery from AMAN just as with other types of GBS. I had AMAN in 2001 and was completely paralyzed below the neck but escaped the vent. I immediately received 8 IVIG treatments. A year later I was driving again with about 85% recovery which is where I am today and I am in my seventies. Lots of PT and water aerobics helped I’m sure. At one conference I met a younger man with AMAN who had exactly the same degree of recovery as I did. Recovery is difficult to predict as it is based on a number of factors. Being optimistic and carrying out your daily exercise routines helps. Good luck!
AnonymousMarch 9, 2007 at 1:58 pm
My mom was diagnosed with GBS almost 4 weeks ago. From what I’ve read on this thread, it sounds a lot like the axonal damage has happened to her too, but I’ve never heard her doctor say that word or use AMAN. I’ve been there almost every day, but I suppose I could have missed it somehow.
She is paralyzed up to her neck/upper shoulders. She has been on a vent since her 2nd day and was just given a traech 4 days ago. She was given IVig for 5 days, with her last dose 3 weeks ago yesterday.
The doctors have all told us that her nerve damage goes way beyond the sheath and her actual nerves were completely damaged. We got the same explanation of a copper pipe with insulation around it and usually with gbs the insulation gets nicked but heals rather quickly. All of her neuro docs tell us her “copper pipe” was cut in half as well as the insulation.
Her blood pressure goes from 250/144 (sometimes even higher than that!) to 40/? (it couldn’t even read her bottom number). Her heart races even completely sedated up to 150-160 bpm. It’s scary.
We keep praying and waiting for the good news to come. It did in a small form yesterday when we had a family meeting and thought from other docs that they were going to recommend taking her off life support, but they suggested we wait 3 -6 months for any sign of improvement. If I hear one more doc or nurse say to us that this is one of the worse cases of GBS they’ve ever seen, I might scream.
Does what I have described sound like axonal damage to you?? I know so little, even 4 weeks in. If I posted this in the wrong place, forgive me for being a newbie and maybe a moderator can move this to where it should be.
Thanks for your time.
AnonymousMarch 9, 2007 at 3:40 pm
Thanks Dr. Shawn. I’ll keep checking back into my Inbox. Since I posted earlier, I’ve checked with my dad and he does not recall anyone saying axonal gbs or using the acronymn AMAN or ASMAN. He wanted to know if that was what she has, what does it change besides the initial diagnosis of gbs and her course of treatment. I told him I didn’t know, I was learning too. So if anyone has any information or help regarding prognosis or treatment for this variant beyond her 5 doses of IVig, please let me know.
It may sound silly, but I like that it has a “name”, instead of just a “severe case of gbs”. But like my dad asked, does it really make a difference?
Thanks again for listening and any advice, input, etc, is most welcome.
AnonymousMarch 9, 2007 at 4:45 pm
By the way, (sorry for the double post), this all happened within HOURS of onset. She was fine Saturday, by Sunday she couldn’t walk, by Monday she lost feeling and movement in her arms, by Tuesday she was on the vent and couldn’t do anything. They did start the IVig on the 1st day, it was a quick diagnosis, but the damage was so severe, so quick, and sudden that it has left her in such bad shape.
Today she seemed better as far as blood pressure swings and they have decreased her sedation meds to the point where she is more alert when we are in the room with her. I don’t want her to be in any pain, but I like her being able to respond with a smile when we walk in.
Keeping my fingers crossed and a prayer to God that this could be the beginning of recovery for her.
AnonymousMarch 9, 2007 at 11:35 pm
My 29 yr old son Nate has Axonal damage which is also know as AMSAN. After I read about it, I flat out asked his neurologist if he had that and he said yes.
It just means that the damage is much more than just the nerve coating but rather the nerve itself is damaged.
It means that the healing process will take longer than if just the coating was damaged. The nerves either heal or they grow new roots to by pass the damage. Its slow but it can happen completely.
Nate is 14 mos out and has gotten back his chest muscles, back muscles, arms and some of his hip and upper leg muscles back.
His lower legs and feet muscles are still not there yet and they’re still numb a lot.
His doc told us he would be ok anywhere from 6 mos to 2 yrs or longer. Everyone heals at a different rate.
Nate’s blood pressure was out the roof when he first got sick but it got better with the meds they gave him and he no longer needed meds for that after 3 mos.
One thing that is hopeful though is that GBS doesn’t affect your moms brain or mind. Even if she has facial paralysis, she knows pretty much what is going on and talking to her to tell her what his going on is a good thing.
It will help her to know.
When Nate was first really sick, I would tell him what I read and reassure him that he would get better. It really helped him a lot.
AnonymousMarch 10, 2007 at 4:52 pm
GBSsux- the user name is so apt!
Just a little encouragment here- your mother is still very early into the disease. There could be lots of ups and downs from here. The symptoms and presentation can vary widely from patient to patient, so be aware that you may see a whole constellation of things happen, but most of them will go away eventually.
It’s so scary when it’s happening, but keep coming back here with any questions, and I think you’ll find the answers you need.
Best wishes for your mother’s quick recovery.
AnonymousMarch 10, 2007 at 5:44 pm
I took the day off from the hospital today, but spoke with my dad who said Mom is almost sitting up in bed, they have her head way up and her legs lowered, but still in her bed obviously! Her blood pressure is almost normal, heart rate good, and he said she’s even taking a few breaths off the vent. It seems to great, btu so fast!!! Can this be???? We thought they were going to tell us to stop life support 3 days ago, and now this?? It’s such a roller coaster of up and down!! I don’t want to get too excited, but at the same time, how can I not???? Maybe this will go away as fast as it came??? I know full recovery could take time, I know she may never walk again, but then again, look at all of the people on here who have been told that, only to prove docs wrong!!!
I would like to know some more about how this is contracted in the first place. Mom received her first ever flu shot in December, and in mid February this happened. I wonder if there is a way to trace the lot number of her flu shot and see if it originated in, oh say, China???? I also wonder where the other lot of this flu shot went and if there is a way to find out if other’s who got it also developed gbs. I know it sounds like a shot in the dark, but I’m very curious………..
AnonymousMarch 11, 2007 at 10:22 pm
Your Mom in all likelyhood developed GBS from the flu vaccine. The time frame seems right.
You can trace the lot number of the vaccine from the Dr who gave her the vaccine. They must by law keep the lot number and also tell you it if you ask.
It doesn’t mean the batch of flu vaccine was bad, it means your mother had an immune response to it and thus developed GBS. I do not believe we get our vaccines from China at all, not sure that they make vaccines. Most manufacturers are here in the U.S. or England. France might have some pharma companies that make the vaccine,not sure.
There have been so many people here on life support for weeks, months and about 1 year, you never give up hope ever. Was your Mom told she has axonal nerve damage?
Do not count on GBS going away fast, very rare when that happens. We have a saying around her GBS stands for Get Better Slowly because it could very well take her months or quite possibly years to get better, that’s the truth.
Wishing your Mom the best.
AnonymousMarch 12, 2007 at 9:23 am
Thx for post! We weren’t told she had axonal damage until I saw it on here and everything seemed to match what happened to her. Very quick onset, loss of everything from the neck down, needed be on the vent by 2nd day, preceded by diarrhea 3 days before onset, 1st flu shot of her life in December (06), with onset of symptons mid Feb (07).
So I had my dad ask the neuro doc, and they said, “Oh yes! We have that noted all over her chart”, I guess they just didn’t bother to tell US. 😉
I went to see her yesterday and as much as I wanted to see some improvement like my dad saw, I just didn’t. She wasn’t worse either. Just the same. And honestly, I’ll take same over nothing any day.
I would like to ask those of you who were on a vent and couldn’t communicate at all, how do we know when to bring in someone to help her? What I mean by this is; she seemed depressed yesterday (understandably!) and when I kept trying to tell her she would get better, she would almost violently shake her head “No!” I said yes you will and she just kept shaking her head. I’ve read somewhere that bringing in fellow gbs survivors and letting her see that they got better, so can she, will sometimes help. Anyone know about this? What about a psychaitrist? I don’t want her to feel like she’s never going to get better and give up on herself. She has too long of a road ahead of her to get discouraged.
AnonymousMarch 12, 2007 at 1:40 pm
No worsening and no progress is actually very typical of what is called a plateau stage of GBS. This often signals the end of the “active” stage of the disease. This plateau can last for anywhere from a few days to several weeks, so although it can be frustrating, it usually means that healing can begin.
Have you tried reading some of the articles about GBS from the previous issues of the GBSFI (you can access this info from the home page of GBSFI) to your mother? She may think that family and friends are not telling her everything or only placating her. Perhaps hearing what the professionals have to say about the course and recovery of GBS will help your mother to understand what she is dealing with, and realize that she will most likely recover well.
I suggest that you and your family read the book “Gillian-Barre Syndrome” by Drs. Gareth Parry and Joel Steinburg for the most up to date information on treatment and recovery. Buying a copy for your mothers doctors is an excellent idea too. Many of the older medical guides are outdated or inaccurate. Because it is a rare disease, most doctors have not treated a GBS patient, or if they have, it has been unusual.
There are many others on the forum who can give you information about how to communicate with someone on a trach (I didn’t have that experience myself, so I can’t be of much help there). GBSFI also has some cards designed for communicating with people with GBS who are on a trach. These are available through the online “store” on this site.
Depression is very common with GBS and should be treated at some point. Anti-depressant medications are commonly used to help with GBS pain (we don’t know why, but they seem to have that side-effect), and fortunately also help improve the depression. I would definetly speak to her doctors about this.
Yes, it might be a good idea to have a recovered GBS patient talk with your mother. Contact the local liason for GBSFI for names.
AnonymousMarch 12, 2007 at 2:58 pm
It would be nice to know your first name… 😀 Welcome! You are and probably will be a link from your mother to us for the next few months. Please keep us updated – we tend to get attached to those going through the roughest part of this stuff.
My heart goes out to you. Keep your chin up and just keep showing up to see your mother with a big smile on your face. This can be rough on you and your dad, so just know we are here to listen to you vent anytime. You are not alone!
AnonymousMarch 12, 2007 at 5:03 pm
As you said in an earlier post, and SuzyQ suggested, I definitely think you should try and have someone who has had GBS come in to visit her! I can send you info via PM of a liaison on your area if you send let me know where you are from. Having had someone come to visit me while I was on a vent would have been fantastic! At least some of my fears would have been quietened.
This is a very touchy subject, I know, but I do recall ‘knowing’ that I was about to die, and of course I’m sure all of us in that situation go through the same feelings. Not being able to express herself is one of the things I’m sure that makes her feel powerless, and in fact, was one of the most difficult things. By feeling you cant tell anyone anything, almost gives you the impression that they cant help you when you need them the most. One thing to remember also is that once your mom is fully off the vent and on the road to recovery, she may not want to talk to you about any of her fears or thoughts during this time.
AnonymousMarch 12, 2007 at 5:19 pm
Just because Mom is paralyzed doesn’t mean she has axonal nerve damage.
The Neuro would have to do nerve testing to determine the extent of her nerve damage, then and only then will they be able to tell if she has axonal nerve damage. Alot of people here were totally paralyzed and did not have axonal damage. So with that said just keep giving her the hope and reassurances that she needs right now. She is so frightened and uncertain about where this illness will lead her.
Tell her all about us and how severe so many were and now they are walking again.
Hugs to Mom.
AnonymousMarch 12, 2007 at 5:48 pm
They (the docs) have done 2 EMG tests and determined that she has axonal nerve damage based on their findings. They did the test as soon as she was airlifted to our hospital and then repeated it again 2 weeks later. As with everything we’ve read about axonal damage, the 2nd test showed much more damage than the 1st one.
When I saw her today, all of my initial fears came back. She looked extremely pale, no color in her face, even in her lips, she was unresponsive to anything, her heart rate was low, her bp was very low. After the docs did their rounds, they said they were going to take her off her dilauded (sp?) drip and only administer pain drugs as needed. They also said she now has a partially collapsed right lung. (Last week she had pneumonia in her left lung). The doc said they weren’t too concerned about it, as this happens frequently when people are laying down for long periods of time.
I know she’ll have “up” days and “down” days, and I guess I need to better prepare myself for that up and down. It’s difficult to not see steady progress, although I know not to expect it.
Thanks for everyone’s responses. I tell my dad everything I get for feedback, as well as other things I read about on the net. He reads everything he can get his hands on. I’m hoping tomorrow will be better…..
AnonymousMarch 12, 2007 at 9:17 pm
Hi: Keep the faith. I had a lot of axonal damage and am able to walk with a cane and get around pretty well. I also had a collapsed lung which mended itself once I was out of bed and up and about for a while. It is a ghastly disease and experience but most of us get through it and, though we have to redefine what normal is, we get to live a “normal” life. Best wishes for you and your mom. Jeff
AnonymousMarch 14, 2007 at 6:53 pm
I just wanted to give everyone a quick update. I appreciate everyone’s input so much and wanted to share what was happening. It sounds as if they are going to move Mom to a different hospital in a few days. It’s hard for me to describe this new place. It used to be a local hospital, but now focuses on more of an “acute step down” place. It’s below ICU, but not quite rehab. A little combination of both.
There are only so many places that will take her on the vent and ICU (at least here) isn’t meant to be a long term stay. So this is the next place for her. I don’t know how long she’ll be there either, as it’s not meant to be a long term place either. It sounds like a place where they are hoping to get her off the vent and then on to a more focused GBS rehab facility.
She is doing better as far as her vitals are concerned, not so big of swings in her BP, and her HR seems to be getting a little more steady. She has fluid in both lungs now, but no one seems to be concerned about that except me, so I guess I’m the one who needs to get over that!! 😉
If the docs say she’s ready to move on, then she’s ready to move on. I look at this as progress, even if she hasn’t regained anything from a neuro stand-point. I’m keeping my fingers crossed and prayers to God that this new place will help her with her vent and that she’ll be able to breathe on her own again soon.
Thanks for listening and all of the advice! It’s appreciated more than I can express.
AnonymousMarch 14, 2007 at 8:33 pm
What you have told us is called progress. It might not seem like much but just having her bp stabilize and her heart rate is good news.
Progress with GBS comes in very small steps. It doesn’t come in giant leaps but if it is coming even in small steps, its a good thing and it means a lot.
Neuro progress as far as paralysis goes is slow. Don’t expect anything too noticeable yet. Its still early for your mom.
The hardest thing to get used to is how slowly things get better, especially with your mom.
Keep a journal if you can about what she was like when she got sick, then write down each thing that happens, even is its small. After awhile you will have a large volume going. It helped Nate a lot for us to remind him of what he was like at first and how much better he is now. It gave him encouragement when he was really feeling down.
Also, talk to her docs about anti-depressants. They can help a lot with her moods and even her pain.
They put Nate on them right away. It has helped him immensely to get through all the months when he couldn’t do anything.
AnonymousMarch 15, 2007 at 2:24 pm
Thats great that your mom is now in progressive care, and her bp and hr are more under control. if i were you i wouldn’t give up on the lung issues, it is not healthy and could become dangerous if there is fluid in her lungs. don’t give up on your inner feelings just because noone else is worried about it like they should be. you are your mom’s voice-keep on the lung issues! it is common for people on vents to develope pneumonia-you don’t want your mom to have to fight through that problem, especially in her state of health. go with your gut instincts-pursue it! Give your mom a Big Hug and tell her to keep up the good work! take care of yourself also!
AnonymousMarch 17, 2007 at 5:15 pm
She’s running a low grade fever now, but goes down when given Tylenol. She’s had it (the fever) for a few days now. Her white blood count is also up slightly. Again, no one seems concerned. They are still planning to move her Monday to the Select Specialty hospital, so she must be stable enough to move. What I keep being told is: everything they are currently doing for her in ICU can be done at the new place, but she doesn’t need to stay in ICU for the care she’s receiving. So they’re moving her.
Her O2 has been raised back up 50% (from 40), but she seems to be breathing off the vent more according to my dad.
I would like to know from others who had Axonal GBS and were on the vent and had a traech like Mom, how long were you on the vent before you could breathe on your own again? The RT notes said they suctioned blood and clear secretions from her lungs, but when I brought that up, they said it’s common and not to worry about it.
This will have all started a month ago tomorrow…………..
AnonymousMarch 17, 2007 at 10:30 pm
I’m sorry but i think i missed the amount of gbs patients this hospital has treated. blood, fluid and fever—hello, why are they not concerned!? it is not the norm for anyone! i have had pnemonia, pleurisy, asthma and chronic bronchitis-i have barely squeaked by at times and that was when i wasn’t paralyzed, i can’t imagine if it happened to me again, other then the pneumonia, how i would fair. please do not bring this up with the rt-they can not be held responsible and they don’t talk to the drs either. for your mom’s sake go directly to her drs and if they don’t do anything about it or seem not too worried, then go to the next one up the ladder. it is a very serious problem. a fever is a sign of a problem, no matter if it goes down after given meds-the fact that she has had it for several days tells the dr its time to do something, and then there is the blood results-more red flags—all this stuff added to the blood and fluid=time to take action. of course this is just my opinion, but if it were my mom in the hospital i would be locked onto the drs’ butts about it! before she is moved to another hospital, new drs, and another new start, have her checked thoroughly. you are all in my thoughts and hope everything goes well with the transfer.
AnonymousMarch 17, 2007 at 11:08 pm
Again I second Cheryl’s opinion.
Just because they are telling you “not to worry about it”, doesn’t mean you shouldn’t worry about it.
Also, the reason they are moving her may be for insurance reasons, not because it’s best for your mother. I hope they are indeed able to give her the same support at the new place, but if that is so, why are they moving her?
Sorry to keep pushing this, but many of us are speaking from experience, when we say that not everything you are told by doctors or hospital staff may be accurate. Listen to your own gut feelings. You and your father need to put your mother’s best interests first, because nobody else will.
AnonymousMarch 18, 2007 at 11:07 am
Thanks for your concerns. I will address them. What they are telling me when I bring this stuff up is: low grade fever is nothing to be alarmed about. It goes down with Tylenol so it is being treated. The blood and clear secretions from her RT suctioning her out is almost always the result of the traech scrapping her lungs when they suction and is nothing to be alarmed about. Her white blood count is up slightly, which probably accounts for her low grade fever, and they are watching it. As far as I know, her lungs are the same (with small areas with fluid in them).
I think because her BP has “normalized” to them (it still goes up and down, just not as frequently and not as high as 272/145, but when it goes up it’s around 180 or 190/120 or 110, around there) and I haven’t seen her heart rate go up over 130 in a few days now. I think because those aren’t the extremes they once were, they feel she is stable enough to move to Select.
I’ll ask my Dad when I talk to him today what her vitals are and if she’s still running a fever, etc. (it was only 100.9 yesterday). Tomorrow is “moving day”, but I can’t be there today due to my own family committments.
Thank you again for your thoughts and concerns. It means a lot to have people who have gone through this help me along the way.
Hugs to all of you.
AnonymousMarch 18, 2007 at 11:27 pm
What they are saying sounds reasonable but I would really feel better if she is on antibiotics. Have they started them? Atalectesis(partially collapsed lungs from the vent/decrease in deep breath) is common and cause a low grade fever and will resolve when she comes off the vent. But, She is a extreme risk for pneumonia and antibiotics would be a good idea. Although this is hard to judge with out all the info. How high is her white count and what is the differential? What does the xray look like? Etc….
They may be decreasing the dilauded to decrease sedation in the hopes she may come off the vent sooner but still watch her for signs off distress. Pain control is essential. Continue to talk to her and tell her that her chance of recovery is good(give her hope). Read GBS info to her. If she is not too sedated she should be able to hear everything. Continue to look for ways to communicate as soon as she is able(eye blinks, finger movement) Right now she is trapped in her body and very scared. Usually GBS course is max around this time(4 weeks) and I hope she will start really improving soon. Where are you located?See if any one is near to come help you. I know if any one of us is near we would come to help. I wish someone with experience would have come to see me in the hospital- I’m a doctor and I was still very frightened and I was never as sick as your mother. Let me know if I can help. Dr. Shawn
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