Sharing a link on Rosanne Cash's recovery from Chiari surgery

[selmaS]

Hi All we all ask how long will I be out of work and what can I expect...as I said I am always seeing improvements with each yr that passes, and I saw this article on line about Rosanne Cash I just had to share it with u all.

http://journals.lww.com/neurologynow/Fulltext/2012/08030/10_Year_Ache__Singer_Rosanne_Cash_on_living_with.16.aspx

[selmaS]

  Since the search this community feature is not working to bring up this thread I am bumping it up as I see it is still a topic of interest.

[selmaS]

  Hi...with sleep apnea, u have to ask if u snore, and have u ever been awakened gasping for air?

Many of us do have sleep and fatigue issues....not all have sleep apnea, but it should be considered if u have the above issues in addition to sleep disturbances and fatigue.

A rheumatoid Dr is the right one for EDS....

[auntij2746]

Thanks so much, Selma for all your recommendations!  I really appreciate the idea of having everything possible checked out B4 surgery!  My NS ordered the 2 MRIs of Thoracic and Lumbar and I am scheduled to have them next Monday - with sedation :)  He also found a Rheumatologist who will see me in 2 weeks (it seems that most Rheumatologists have long waits don't know why) to make a Dx of ED.  The PCP and NS both thought a Rheumatologist was the one to see for ED.  I saw an ENT yesterday who cultured some areas in my sinus' (ugh feeling) and will get back to me next week about how to treat a possible infection in that area.  PCP also ordered a full sheet of bloodwork to see if it can be determined where the inflammation is in my body, if not from the sinus.  I think I have seen more drs in the past month than in my entire life...  My only other question is sleep apnea, as I have been seeing a lot about that on different postings here.  I do not sleep well, but atributed it to the fact that I cannot find a comfortable position; some nights there is no sleep at all and I just watch the clock tick away.  I never awaken feeling rested.  Is this a common side affect of Chiari?  Are most people checked for apnea before Surgery - does it have any bearing on the way the surgery is done or the recovery?  Thanks again!!

[selmaS]

  That is 2 diff MRI's.....one for the thoracic area (chest) and one for the lumbar (lower back).

Yes u r completely in the tube.But when I had the brain MRI I was completely in as well....I am not sure but if u tell them of ur issues they may put  un in reverse feet first, but that may only work for the Lumbar....do what I do, close ur eyes b4 u go in and imagine u r outside and they r doing roadwork.....

Look at the date on the post, then go to the profile page, that member may no longer be active...so a PM may be the best way to contact them.

[auntij2746]

I am so weary :( :(     I am going to request a lumbar & thoracic MRI do you know if that is one MRI or two?  This may be a silly question but are you further into the MRI tube for these than the cervical? I had a tough time with cervical one :( and I remember I was not in as far for brain one.  Once I have found out if I have GD I will ask n's what he would do differently. And yes, I totally agree about being infection-free before surgery. I am happy this last n's picked up on the sinus blockage on the MRI.There is a dr barrow here that I have seen mentioned on posts and I have posted a question for more info on him as well. I need to find out if my insurance company has a limit on opinions I can get. Thanks for your responses:)

[selmaS]

  I am confused...this is a chiari specialist and he does not think that a syrinx can form lower then the cervical spine? Sorry that is wrong, we have members with a thoracic and lumbar syrinx, and they do not show up on a cervical MRI....yes, many times a syrinx will shrink after a decompression surgery, but not always....and it is good to know what they are b4 surgery to know if they have in fact reduced in size post op.

Did the NS say what he would do diff for ur surgery if u tested positive for EDS?

I have heard if u had an infection u need to get on antibiotics to rid urself of it b4 surgery....not sure if I would want surgery with an infection no matter if he felt it was ok....I would not be comfortable with it.

In my opinion, I would get another opinion to compare all this too....

[auntij2746]

Thanks again you are helping me so much! I emailed a list of questions to the NS this morning and I got a call back from the PA who had gone over everything. Could you comment on his answers, I value your experienced opinion.
1. He said the normal stress test would not harm the chiari further but if caused too much pain, I should request the chemical test. The NS leaves it up to patients cardio dr if a stress test is necessary b4 surgery. My cardio thought it was a good idea given my age and high cholesterol.
2. He thought it a good idea to check out ED if I have concerns and said to start by asking my PCP who I should see for dx. He did say if my PCP could not help me & I got frustrated to call him (NS) back and he would help me find someone to see for a dx
3. I have app't w/ENT to check a fill led sinus cavity to see if that is cause of inflammation indicated by high sed rate. I asked if this needed to be clear b4 surgery. His answer was that I need to be checked for infection in sinus and if so, this needs to be cleared or being actively treated at time of surgery due to additional infection hazards op and postop.
4. Thoracic & lumbar MRIs . He said normally the syrinx start at the cervical area which makes them believe I do not have any further down . He also said if there are any syrinx in the spine it would not change the decompression surgery. Also that the surgery should cause any spinal syrinx to collapse she normal flow was restored.   This is what I am most confused about .

[selmaS]

  U need Both a Dr with experience and one u r comfortable with...having a Dr close to home weighs out over experience many times, and it is not always the best route to take, u want a Dr that knows this condition inside and out. JMHO

A NL at my NS's office did the office exam for EDS, and there is a way u can check for hyper-mobility, But keep in mind not all with EDS are hyper-mobile.

Here is a good link to a chart for the Beighton score if u have 2 out of 9 u have a form of EDS....so no worries if u do not have all 9, plus there r other factors like ur skin, how easy u bruise, and heal....that all is taken into account. I have a score of 7...as I could not even try to bend to touch the floor or I would have fallen over...lol...

http://www.hypermobility.org/beighton.php

As far as questions, u want to know how dedicated this Dr is to Chiari and research, what post op care he offers and or suggests, post op care is the worst...there is none once u get past ur post op visits....

If he says u will be fixed...run the other way.....

[auntij2746]

Thank you so much!  I have sent the questions to the NS I saw yesterday regarding the thoracic and lumbar MRI's, as a precaution, as well as my questions about the EDS  I do not have any spinal issues but as you said,it is possible.   I did see a Chairi Specialist in another state last month and he was the one that ordered the cervical and brain MRI's.  He did not order a Thoracic or Lumbar and, of course, I did not question it then because I assumed he ordered all the reports he needed to make a thorough examination and diagnosis :(  I did note on his report that he sent me almost 3 weeks after my visit with him that he said "There is no hydrocephalus, syringobulbia or syringomyelia"  But he also said "I do not have any lumbar or thoracic films for review today".  I guess I am confused because I thought if the "chiari specialist" needed to see this, he would have ordered it along with the brain and cervical MRI's.  Are there particular tests you can undergo to determine if you have EDS?  WOW - there is a lot to this and since it's the brain,  one cannot be too cautious.  It was just so refreshing to finally meet with a doctor who seemed very knowledgeable and welcomed every question/concern that I had at the time of the appointment, and also one who seemed to really care about me as a person.  I may have just had a bad experience with the Chiari Specialist, but unfortunately it was probably my only shot at traveling so far for an appointment.  I was seriously considering the surgery with the out of town Chairi Specialist and just put aside my desire for a more "caring" doctor, until I met the NS yesterday and realized I may be able to have both right here where I live.  If you can think of anything else I should ask the NS here, please let me know.  I value your opinion..
Thanks again,
June

[selmaS]

  Hi, yes I feel u should do all testing b4 doing nething else, u need to know if u have a syrinx in those areas too, many Drs do not think to look in the thoracic and lumbar spine for them, but we have enuff members with a syrinx in those areas...and u could have disk issues as well, it is good to know b4 hand, and the lumbar MRI can help with ruling out tethered cord.

Also make sure they check u for Ehlers-Danlos B$ u consider surgery as it can affect how u feel and heal post op.

With EDS u do not have to have all the symptoms and when we r younger we may not notice it as much, heck I never had a clue I had it either.But deff check for this B4 surgery as it can affect how u feel and heal post op.

The problem  I find is if u have EDS and wait until post op, u may get the synthetic dura patch, those with EDS have a higher risk of rejection,so leaks, infection etc,,....u would need ur own pericardium used for a dura patch and nothing else.

I would wait and go see one that is a Chiari specialist, it is worth it to  travel .

If ur  Dr is not asking if EDS was ruled out, then u deff need to have someone else look at u as well.

[auntij2746]

Selma.
Thank you so much for responding to my post!  Your response has given me much to think about and, of course, prompted more questions.
1) Do you suggest I ask for an MRI of the thoracic and lumbar?  The 2 NS's I have seen so far have ordered Cervical MRI'', and also MRI's of brain both with and without contrast.  Also one MRI was done to measure the CINE flow.  The results of those MRI's showed:  Reduced flow, 7-8 mm protrusion of  C tonsils, extreme "crowding" in the skulll, no Syrinx.  

2) My main symptoms are:  Constant ha in back of head  and constant neck pain(in last 8-9 months), intermittent total body flushing, numbness in my left hand and 2 fingers (for past 2 years), extreme fatigue following any type of activity, inability to exercise; ie. I was walking 3-4 miles per day up until 8-9 months ago.  I have put on 20+ lbs in last 8-9 months.  I know some of that is due to lack of exercise and some due to experimenting with different amounts of caffeine in the form of chocolate covered berries/nuts :(
and eating other things that I probably should not.  Other than the chocolates and some veggie chips, and occasional frozen treat, I am on a paleo diet, as I have intolerance to dairy, all grains.
3)I thought it interesting what you said about ED and did some research,  I do not fit any of the long-term symptoms, but have noticed in the past 8-9 months that if I do bruise it takes a lot longer to heal than it did in the past and once in a while a joint will slip out.  This is not a common occurence.  Is ED something you can develop later in life?  Do you suggest I have the NS check for this before surgery?
The NS I saw yesterday in Atlanta was a total breath of fresh air for me.  After reading all the posts, I was wondering if I would ever find a NS that I felt comfortable with both from a professional and a personal standpoint.  I think yesterday's doctor fit the bill and I am inclined to go through with the surgery.  The bonus is that he is right here in the city and I will not need to travel.  Even before I asked, he brought up some points I was very concernd about, like  1) CSF Leaking.  It is one of his biggest concerns and so he has done everything he can to prevent it.  He uses a synthetic patch on the dura and said he has had extreme success of it not leaking.  He said that the tissue does not try to attach to it like it does the bovine because it is inadherent.  I had not heard this before, but am doing some research on it - have you heard of this described in that way?  2) another issue he addressed was post-op nausea.  He explained (again I am going to research this but it made sense) that the Nausea Center is in the back of the neck and since that is the are being operated on, the risk of nausea is greater.  therefore, he is strict about his patients having only fluids for at least a week post op and is very careful (as much as he can be) w/meds that may cause nausea.  He said the last thing a post-op decompression surgery patient needs is to be vomiting and causing more pressure in the skull at that critical time.
Even though he is not listed as a "Chiari specialist", he has performed 100's of the surgeries and I will withhold his name, as I saw you request in another post, until after surgery, so I can give a more complete description of how it went with him.
I apologize for the length of this post, but I am hoping that others may have similar experiences or some advice on how they handled some of these issues.
Once again, I thank you for being so attentive to all of us who are going through this time of research, confusions, and difficulty making enormous decisions when our brains are hurting to much to sometimes even get out of bed in the morning.
June

I

[selmaS]

  Hi,

The biggest set backs that I have seen some can be associated with related issues not dx'd b4 surgery...like Ehlers-Danlos...this can affect the way u heal and feel post op, especially if the Drs r not aware of it pre op.

There r things that need to be done diff in order to help u heal to the best of ur ability...

And the other issue is the NS not having enuff experience with chiari and doing the surgery neway.

When u were told u were a surgical candidate, what reason did they give u, what issues do they feel surgery could resolve for u?

Do u have a CSF obstruction and is surgery to prevent a syrinx from forming, did they do a MRI of ur thoracic and lumbar spine to rule out a syrinx in those areas?

There is much to consider....and it all depends on how it is  affecting u.

U could get worse, u could get better, but if the surgery is not to restore flow and just o possible help some symptoms, u may want to hold off...but if u have that obstruction and know a syrinx is inevitable,and some of ur symptoms include drop attacks , sleep apnea...then u need to consider it as a possibility.


And yes, many that do not have other conditions to slow the recovery process do move on with their lives and do not come back here....the people on here cycle just like the chiari symptoms....every 6 months to a yr it looks and feels like a whole new group.Some may pop back every now and then.

IMHO the biggest problem we have is post op care, and even Chiari specialists not realizing what this like for us and they minimize it..give us time lines to go back to work which r not realistic.They look at recovery of the incision and the physical aspect of what was done to u, not what effects it may still have on u, and bcuz we do not require surgery for the remaining issues, they no longer r our Dr...again it is post op care that is lacking.More unknown then the surgery itself.

Too many expect surgery to be like a light switch, on I have chiari, after surgery,off no chiari ...so I am better...that is not the case u still have it, and it is a slow process to deal with...I really feel many do not accept the new limitations and lie to themselves and to others that they r doing well, when in fact they still have issues, granted they r better then b4....but we can not stick our heads in the sand and think I will feel perfect...Chiari is life altering....

  With that said, I am glad I had my surgery and I would do it again.Yes I still have issues, but I do have other related conditions feeding them.

  Make sure u know all the related and non related health issue u have going on this will determine how well u recover, along with having the right Dr,

[auntij2746]

I just read the article on Rosanne cash and am wondering if I will ever recuperate from surgery? I have a 7mm with no syrinx but have been deteriorating over the past few months with now constant ha fatigue and unable to even go for a brisk walk. A day with normal activity; ie being w/kids is now followed by 2 days of complete recup. :(   at 61, after reading so many posts and this article, I am wondering if surgery would be going from the frying pan into the fire?  I have app't today for 3rd opinion with a NS. So far I have been advised that I am a good candidate for surgery, but that it is not life threatening and I need to make decision based on my toleration of my symptoms. The NS's I have seen so far do not describe the recuperation as lengthy as what I am hearing here-is it because they are not aware of it? Is it because they are optimistically only giving me the "best case scenario"?  Is it because there are people out there who have had surgery with relatively short recuperations and they do not return to this site to tell us?  I am so grateful that there are so many of you willing  to share your experiences because this can be so confusing. Thanks in advance for your responses :-)  june

[selmaS]

  Hi Lori...How r u doing? Thanks for adding those additional links on this topic.... : )

[laratterman]

Here is the Neurology Today article link:  http://journals.lww.com/neurologynow/pages/articleviewer.aspx?year=2012&issue=08030&article=00016&type=Fulltext

There is also another article on Yahoo!  Here is the link:  http://voices.yahoo.com/roseanne-cash-comes-out-having-chiari-malformation-646297.html?cat=70

SO VERY glad she has finally responded to all our requests!  :)

A round of applause and a standing O for Roseanne!!!!

[selmaS]

  Yes that would be nice, not sure if that will happen...

[Viva001]

Wouldn't it be nice though to read 1 article that has the most current definition for Chiari malformation, not based upon herniation?

[selmaS]

  What do u mean mixed? I know as u do, that there r ups and downs to all situations and that includes surgery, and this can take some of us longer to heal, but it is something u continue to experience ....

It really depends on what else u have going on, like EDS< ICP etc,.... and how bad ur compression is.

[Mazie1209]

This article gave me mixed feelings about surgery! But enjoyed reading it.
Mazie :)

[selmaS]

http://journals.lww.com/neurologynow/Fulltext/2012/08030/10_Year_Ache__Singer_Rosanne_Cash_on_living_with.16.aspx

Try this one if this does not work google Neurology Now Rosanne Cash Chiari and u will find the link.

[selmaS]

  I will see if I can find a diff link for u to use.....

[Viva001]

It's not highlighted & I can't seem to grab it.  Maybe someone less technophobic can understand it.

[selmaS]

  Oh really? I wonder y?

[Viva001]

I cant access it from the iPad