You are going to hate me, but I feel so worried and helpless

General
1

You may boot me off of this group because this post looks to me like it goes against the prevailing view here I have tried to learn as much as I could about CM to help my sister. What I have learned from peer reviewed journals from doctors who have devoted their entire lives to studying neurology is that often there may be a finding of CM but it doesn’t explain symptoms and surgery doesn’t help these suffering people. This site makes it sound like everyone who has a CM needs surgery. I have yet to read here about one person for whom the surgery did not go well but I understand that entire hospitals have drastically limited the procedure because it was doing more harm than good.

I love my sister. I want the best for her. My sister is leaning towards having a top notch facility evaluate her instead of going to a place that is known for suggesting surgery but when she gets on sites like this one she questions this approach and wonders if she is wasting her precious time. Perhaps conventional doctors are too narrow minded? Of course I don’t know the answer and of course I see her suffering and want immediate relief for her. It would be wonderful if a surgery could fix all this. Plus I notice that there seem to be very few people here who are years out from surgery and doing well or am I just missing these posts? I also see no one hear who had things go wrong but in any surgery this will happen.

I am sorry to be contrary but I’m so frightened for her. She is young has a great career that she was just about to start, has a great husband and two little ones.

I will provide citations if people would like them but I don’t want to go too far out on this thin ice. I know you are all suffering and need hope but it just seems statistically very probable that there will be at least some people here that will not benefit from surgery.

2

Hi, I am 7 years post op and doing pretty well! Surgery does not fix Chiari but may help. I had 15mm herniation and lots of symptoms. No problems until I had children and epidurals. After that I felt like I was falling apart. Took 14 years of searching to find the answer. I praised God because then I knew what I was dealing with and could move forward. The surgery was very helpful for me...more(not much) csf flow, less headaches... Like I said it is not a cure but it may help. Dr. Heffez at wichiari.com treated a friend of mine and I will go to him if I need any further help. I live in Florida and he is in Wisconsin but that's where I'll go.Hope this was helpful.

3

Hi Sissy,

You and your questions are very welcome here. I know you love your sister very much and just want her to be as well as possible. Is surgery her answer? I don't know. I would have to know more about her medical situation. You are very upfront and so am I. I have a medical background and have studied Cranial Nerve Disorders and CM's since 10/ 2004. I became very ill in 7/2001. I have also read every study and peer review and know most of the specialists who wrote them.

I disagree that surgery is the answer in 99% of cases or a cure and tell everyone. I have talked to 1,000's of Chiarians and only told two I thought they should have surgery. I am almost 8 years post op and wouldn't wish my life on anyone. I was diagnosed too late and almost became a quadripledgic. My surgeries were 16 hours long and they had to rebuild my C Spine. I recommend everyone see a Great NS not a NS at a Chiari Center unless they have another underlying condition. Then I recommend one NS at a Chiari Center.

I think what you need to realize is that many people come here and have a diminished quality of life and bad symptoms. They think and are at times told that surgery will heal them and or they will get their life back. You have read the statistics you and I both know that is nearly always impossible. They may have a positive surgical experience but within two years start having post op symptoms. They symptoms might be their pre op symptoms returning or new symptoms. They are still horrible and these people suffer. Children with CM die daily. Adults die but not as often.

My surgery was considered a success because I am not a quadripledgic. It doesn't matter I feel like my head is bolted on 24/7 or I am in constant severe chronic pain. That my whole life disappeared as so many does along with most of my friends because they can't watch or be there when I can't literally & figuratively. That I have had to make plans for my daughter three times in case I was no longer here. Then there are the countless other horrible symptoms, side effects, treatments, therapies and related disorder I also endure.

Why do intelligent people still opt for a flawed surgery on an illness no one 100% understands?....... Hope. Hope that they will get their lives back and themselves back. If only for a month or a year or however long they are fortunate enough to feel well. On rare cases I know people that feel well for years. Do you know what I would give for a day or a week or an hour? In the morning if I don't move for a few seconds I feel normal. Then I blink my eyes and it disappears and reality floods in.

I have seen hearing restored in a teenager, who even though she is having post op issues is still glad she had the surgery. She has a huge part of her life back. She can hear. That is a Miracle.

All the Dr's we recommend or others have turndown 98% of patients for surgery. Most take the "Wait and See" approach unless there is a Major Herniation or CSF Blockage, or Syringomyelia, or Tethered Cord, or other severe medical situations.

I usually am not so negative because it terrifies Members especially New Members just diagnosed. So do we terrify everyone or answer their questions and send them to a qualified Physician when asked? I do not lie to anyone. If asked I will tell them the truth as I have you. So do not quote Neurology Journals to me. Do you even know that I personally was in the hospital week before last and had a 20+ year practicing Neurologist tell me she knew nothing about Chiari , that she specialized in Epilepsy & was sorry my NL was on vacation. Do you know every time we break down and go to the ER that 99% of the time they have never even heard of Chiari or know what to do with us. How dare you come here and start preaching to us about "sites like this" until you get to know Chiarians and this site. Do not assume just because we have Chiari we aren't educated or well connected or aren't good personal medical advocates.

The patients are the experts.

The Specialists need to be educated. The ones we recommend actually are.

Now I am truly sorry your sister may have CM. I hope she doesn't, but by being condescending to people that can help you and her is not a good start.

Was your post to make us aware that surgery sucks and our life is crap? Or is it that you are afraid? We were all afraid as was our loved ones.

Everyone here is actually a Hero.....because even against the odds they still chose & choose to fight and hold out Hope.

Not to be rude as you have, but maybe you should let your sister get a consultation and a second and third opinion, then respect her wishes and support her. This is not an easy Journey, but one you can live through.

No one here chose this life. We just try to make the best of it and play the cards we're dealt.

Tracy Z.

4

My life was perfect until I was 31 years old. Perfect family, career, home, friends, vacations, future, dreams, goals. Everything was perfect. Now nothing will be ever perfect again. Never, but that doesn't mean that I or any Chiarian is less than......Just because we got sick. I don't want your sister to be sick and I don't want you to be afraid for her or you or your family. I don't even know what to apologize for...........I wish I could hug you as you cried because I know your fear. I live the reality every day. Just remember this if you don't remember anything else or never want to come back here because I am so horrible.

YOU CAN SURVIVE CHIARI. IT MAY NOT BE YOUR PLANNED LIFE BUT IT STILL AT IT'S WORSE HAS MOMENTS OF JOY AND LOVE. I HAVE MET THE MOST BEAUTIFUL PEOPLE THAT HAS CHIARI AND OTHER RARE DISORDERS. PEOPLE THAT GIVE MORE TO THE WORLD IN A WEEK THAN MOST DO IN A LIFETIME.LAST NIGHT I READ A CHINESE FABLE THAT I KNEW WOULD BE PROPHETIC BUT DIDN'T KNOW WHEN UNTIL NOW....

Derek Siver's

This is my favorite fable:

A farmer had only one horse. One day, his horse ran away.

All the neighbors came by saying, “I'm so sorry. This is such bad news. You must be so upset.” The man just said, “We'll see.”

A few days later, his horse came back with twenty wild horses. The man and his son corraled all 21 horses.

All the neighbors came by saying, “Congratulations! This is such good news. You must be so happy!” The man just said, “We'll see.”

One of the wild horses kicked the man's only son, breaking both his legs.

All the neighbors came by saying, “I'm so sorry. This is such bad news. You must be so upset.” The man just said, “We'll see.”

The country went to war, and every able-bodied young man was drafted to fight. The war was terrible and killed every young man, but the farmer's son was spared, since his broken legs prevented him from being drafted.

All the neighbors came by saying, “Congratulations! This is such good news. You must be so happy!” The man just said, “We'll see.”

5

Thank you all so much for responding. Your words have been quite helpful. I appreciate that with all you are going through you’ve taken the time and effort to reach out to me. I’m sorry that my anxiety about all of this sounded like I was possibly trying to tell people here that surgery and their lives suck. There isn’t anything to be gained by anyone from this. I appreciate the candor and definitely will examine my attitudes. I will certainly respect my sister’s decision. More than that, I will support it partially because I am doing everything I can to, respectfully, play devil’s advocate and try to help her look at all sides and possibilities. So far my sister is appreciating this. Hopefully, I can stay empathetic enough that she won’t have to ask me to back off.

This may sound weird, but I just wish that every doctor who is going to see her had to take very sensitive lie detector, competency, and empathy tests! I wish everyone who has life diminishing conditions only saw doctors who passed those tests! But they are humans too and like all professions have their share of various rotten, ignorant, and arrogant people. Yes, I am very frightened of this new world. Fortunately, we come from a long line of family who know how to find the blessings in any situation and honestly feel grateful for them.

I am grateful for you and for your willingness to share what you’ve learned both personally and by reviewing the literature. There’s more I’d like to write but I want to calm down some more and think it through carefully.

6

Sissie, I agree with most others that have commented...Your attitude towards us is negative, and in no way will help your sister. Each person living with Chiari faces struggles that most people can't even grasp. The decision to have surgery is not taken lightly, and is usually supported by a team of doctors, and I mean a full football team size. While I don't appreciate your attitude, I do understand your frustration and heartache. You obviously love your sister very much and only want the best possible treatment and outcome for her. I encourage you, to encourage your sister to become a member of this group. And I applaud you for becoming a member as well and doing everything possible to understand what she is going through. I myself have bounced back and forth several times with the decision to have surgery. It is NEVER taken lightly by any one of us, and is usually a last resort. I myself have chosen to wait...so we shall see. Please, all of us in this group will help you, and your sister, in any way we can. Some of us are medically trained, some of us have lived by experience...but I would much rather have you beat up on me and express any concerns to me than to do that to your sister and further aggravate this dreadful condition that she is already going through. I can't speak for others here, but I am sure there are some that would agree with me. I would much rather have you rant and rave at me. She already has enough on her plate.

7

I would say… Leave the concerns to your sister… I’ve haven’t had surgery yet. And don’t plan on it until my symptoms worsen. I’ve heard people back to work 3 months after. They may not be 100% but they are better. she will be okay.

8

Sissie, My husband had the decompression surgery in Feb. The first surgery. Believe me it was a last resort. He had every symptom on the list & was miserable! Not with the horrible headache but the other symptom; he just couldn’t function. No life so it was either kill his self or have surgery. I would strongly recommend to wait on surgery as long as your sister can. It has been hell! After a month after surgery he sprung a leak & had to have same surgery or the patch, patched. It has been hell again & after 2 weeks he thinks he’s leaking again! Doesn’t think he can survive surgery again & is leaning toward killing his self. Just saying, I have seen more horror stories by people that have actually had the surgery but my husband is 57 so I’ve heard it is easier on younger people. Hope this isn’t too blunt but does show " the other side".Jeri

9


Thanks Tracyz

I really appreciated your honesty int your response.

:) Eybot


TracyZ said:

Hi Sissy,

You and your questions are very welcome here. I know you love your sister very much and just want her to be as well as possible. Is surgery her answer? I don't know. I would have to know more about her medical situation. You are very upfront and so am I. I have a medical background and have studied Cranial Nerve Disorders and CM's since 10/ 2004. I became very ill in 7/2001. I have also read every study and peer review and know most of the specialists who wrote them.

I disagree that surgery is the answer in 99% of cases or a cure and tell everyone. I have talked to 1,000's of Chiarians and only told two I thought they should have surgery. I am almost 8 years post op and wouldn't wish my life on anyone. I was diagnosed too late and almost became a quadripledgic. My surgeries were 16 hours long and they had to rebuild my C Spine. I recommend everyone see a Great NS not a NS at a Chiari Center unless they have another underlying condition. Then I recommend one NS at a Chiari Center.

I think what you need to realize is that many people come here and have a diminished quality of life and bad symptoms. They think and are at times told that surgery will heal them and or they will get their life back. You have read the statistics you and I both know that is nearly always impossible. They may have a positive surgical experience but within two years start having post op symptoms. They symptoms might be their pre op symptoms returning or new symptoms. They are still horrible and these people suffer. Children with CM die daily. Adults die but not as often.

My surgery was considered a success because I am not a quadripledgic. It doesn't matter I feel like my head is bolted on 24/7 or I am in constant severe chronic pain. That my whole life disappeared as so many does along with most of my friends because they can't watch or be there when I can't literally & figuratively. That I have had to make plans for my daughter three times in case I was no longer here. Then there are the countless other horrible symptoms, side effects, treatments, therapies and related disorder I also endure.

Why do intelligent people still opt for a flawed surgery on an illness no one 100% understands?....... Hope. Hope that they will get their lives back and themselves back. If only for a month or a year or however long they are fortunate enough to feel well. On rare cases I know people that feel well for years. Do you know what I would give for a day or a week or an hour? In the morning if I don't move for a few seconds I feel normal. Then I blink my eyes and it disappears and reality floods in.

I have seen hearing restored in a teenager, who even though she is having post op issues is still glad she had the surgery. She has a huge part of her life back. She can hear. That is a Miracle.

All the Dr's we recommend or others have turndown 98% of patients for surgery. Most take the "Wait and See" approach unless there is a Major Herniation or CSF Blockage, or Syringomyelia, or Tethered Cord, or other severe medical situations.

I usually am not so negative because it terrifies Members especially New Members just diagnosed. So do we terrify everyone or answer their questions and send them to a qualified Physician when asked? I do not lie to anyone. If asked I will tell them the truth as I have you. So do not quote Neurology Journals to me. Do you even know that I personally was in the hospital week before last and had a 20+ year practicing Neurologist tell me she knew nothing about Chiari , that she specialized in Epilepsy & was sorry my NL was on vacation. Do you know every time we break down and go to the ER that 99% of the time they have never even heard of Chiari or know what to do with us. How dare you come here and start preaching to us about "sites like this" until you get to know Chiarians and this site. Do not assume just because we have Chiari we aren't educated or well connected or aren't good personal medical advocates.

The patients are the experts.

The Specialists need to be educated. The ones we recommend actually are.

Now I am truly sorry your sister may have CM. I hope she doesn't, but by being condescending to people that can help you and her is not a good start.

Was your post to make us aware that surgery sucks and our life is crap? Or is it that you are afraid? We were all afraid as was our loved ones.

Everyone here is actually a Hero.....because even against the odds they still chose & choose to fight and hold out Hope.

Not to be rude as you have, but maybe you should let your sister get a consultation and a second and third opinion, then respect her wishes and support her. This is not an easy Journey, but one you can live through.

No one here chose this life. We just try to make the best of it and play the cards we're dealt.

Tracy Z.

10

Its really easy to get defensive on something so close to us all… be it suffering it yourself… or watching a close one suffering. (Which is often harder because you can feel helpless)

I have to agree that surgery is not for everyone. But nobody on here sugarcoats the issues. I have started a few threads… and everyone is honest and candid in their replies. Tracy has openly told many people about her recovery and surgeries. Nobody should undergo such surgery with their eyes closed.
I am a member of a Uk support site… and one member was in hospital for 3 months.

This is not a website that “promotes” surgery. We merely discuss our different/similar situations for support

You must remember… on the internet as a whole… people generally write things when times are tough… and surgery IS tough.
So more people will write about surgery, whereas people who lead normal lives are less likely to write about it.

Ultimately the only advice that everyone is going to agree on is : find a doctor your sister is comfortable with… and only then can she make a decision on where she wants to go in the future in regards to her treatment.

I wish you aand your sister all the best :slight_smile: xx

11

I can not stress enough how much I feel for you all and of course, for my sister. One of the worst parts about this is that there are currently so few options available for treatment. That’s why I applaud the efforts to bring more awareness to CM. Research money follows increased awareness. Surely more research will mean more treatment options. Our family, taking the lead from my sister, is feeling fortunate that she is only 24 so as long as her symptoms don’t get too bad, and as long as we can all pitch in to help her, she has the hope of improved treatment with more consistent outcomes.

My sister’s symptoms are moderate and quite inconsistent. She can even vary through out the day with a wide swing. Do some of you experience that also? PT has been helpful as well as relaxation exercises, gentle yoga that doesn’t involve twisting or putting pressure on her neck, swimming, and massage. She has chosen not to write or participated in any support group but she is reading and actually felt very supported by me asking some hard questions. She told me that she considers “false hope” as not hope at all. She said that she is interested in “realistic hope only” and she was surprised but glad to read that Tracy recommends surgery for so few people. For the time being she has decided to be evaluated at the Mayo Clinic and not go to a place that specializes solely in CM after doing quite a bit more reading on both alternatives. We are also very fortunate to have a wonderful internist that our whole family has used who has a grand daughter who was recently diagnosed with CM. He knew about it but has been doing lots of reading also. So in this small world, my sister really is being advised exactly what our doctor is advising for his greatly loved grand daughter. Thank you all for sharing your stories. We deeply appreciate your generosity and kindness.

12

I just retread my initial posting and it was overboard. It was written at a moment of intense frustration and fearfulness but that’s no excuse. I especially shouldn’t have said “sites like this…” I’m sorry. I also thank you again for trying to help me any way. :slight_smile:

13

Us, trying to help us anyway.

14

Jeri, My heart goes out to you and your husband. I will pray the best I can for you. Thank you so much for your bluntness! It was so brave of you to write that. It must be very hard to write about. I hope comfort finds you both and holds you in it’s arms and that you are surrounded by love.

15

Sissie… I totally understand. I am the worst culprit for writing online at times of high emotions. Then I feel massively guilty (because I do go overboard haha)

CM is indeed something that has few options in terms of treatment. Several members on this site… Tracy, Beeba and Abby for example - they are always writing about alternative causes for our symptoms… such as dystautonomia and EDS. Our symptoms are very vague. Such as fatigue… this can be caused by a number of things! And some people have surgery in the hopes it would fix the fatigue - and people find that it doesn’t :frowning:

I have been reading this site for the last year - and do not feel it promotes surgery. There are members who recommend it (but I would recommend it too if I had a good outcome!)

What im trying to say is: people like to blog their progress thoughout surgery recovery.
But people have always been honest and told me that they do not recommend surgery… and have said it was worst decision ever.

But as anybody should know… EVERYBODY is different. And their outcomes are differeny. So therefore… you cannot compare.

Having a syrinx is a different kettle of fish…but I wont go into that haha :wink:

But I have spent the last year trying alternative treatments with medications and change of lifestyle. And as I feel no different… I then weigh up the options of whether surgery is a risk im willing to take. I am 25 with one child…

I just dont want you, your sister or any other visitors to this site… to feel that we provide false hope or anything other than truth. And I am sorry you guys felt that way

16

Hi Sissie...

I, personally, do not take your post as offensive or negative...I take it as a sister being scared and trying to educate herself on this condition called Chiari....It can make ones head spin...search the net for info on Chiari and reading tons of things that at times can contradict the last page one just read.

I am so sorry that your sister is going through this..she is so lucky to have a sister like you!

I will tell you a bit about my story...I had the surgery a little over 4.5 yrs ago...I had it done by a local NS...he happened to be the Chief Neurosurgeon at the hospital...he told me he did about 1 decompression per mth...He had done surgery on me before the decompression(C4-5 fusion)...I trust him. He did the fusion 1st , as it was decided to fix what we knew for sure was broken, so to speak...the fusion went great...I waited 6 mths after that surgery and went back to him..we went over my symptoms, which had worsened...then it was decided to go forward with the decompression.

I had no complications from the operation. I am better today than I was before the surgery. However, I still deal with chronic pain and other issues, such as balance problem , visual disturbances numbness/tingling in both hands and legs.

The classic Chiari head aches have gotten much better, as did the awful insomnia...I use to be awake of DAYS on end..that has gotten so much better. My heart rate has straightened out...I would get this crazy rapid heart beat that would come out of nowhere it seemed...1st time it happened , it scared the daylights out of me. My wordfinding skills are pretty much normal now.

This is a weird symptom that some docs think is just a coincidence..(I do not think it is a coincidence!) Get this one..for years before surgery, I would get pnemonea(sp) or bronchitis at least 3-4x a year....the docs always told me that if I quit smoking I would no longer get these issues...made perfect sense to me..we all know ciggs are bad..but I did not quit! WELL....I never had to use an anti biotic for lung issues after my surgery!

Funny thing is I finally did quit smoking and got a cold that did lead into an upper respitory infection and I had to use an anti biotic! I honestly think all those infections year after year was due to the Chiari...just too strange for them to just stop, ya know?

Let me know if I can answer any questions you have ..like I said..It will be 5 yrs for me in late August....I am happy I had it done.

Take care,

Lori

17

The last 2 times we spoke with our neurologist he mentioned decompression as a possible solution to the headaches if they were bad enough. But based on my wife's ability to somewhat control them (so far) without the use of anything stronger than ibuprofen and massage... he recommended against it. I believe his exact words were, "If it were me I would rather take Advil than have my head cut open"

18

My daughter was barely able to function anymore. She'd been able to go through the motions for a while but the 24/7 pain was getting to be too much. She had quite the ideal life before symptoms all began as a super smart, athletic, full of joy teen, adored by her family, friends and Pekingese. No med, therapy, treatment, or vacation helped at all and we began to worry about her future. Would she have the strength to go on living this way? If it were me...maybe NO?

Watching someone you love suffer is heart wrenching. At the same time, to be in their shoes, I can not imagine. We ended up collaberating with my daughter on a check list since she was too young to decide on surgery herself and too old for us to do it for her. We outlined a few important things in her life. Once she felt like CM had taken one of these things from her, she checked them off. Once all items were checked, then we'd call the NS to set up the surgery with the AMAZING NS we finally found.

ONLY when we thought ALL options had been exhausted AND she felt like the possible benefits outweighed the risks, did we set up a surgery date for her.

Her decompression was in November and it's been miraculous. Every day is a little better and she's back...NO MORE going though the motions and just TRYING to play normal. Life is good once again.

Another member posted that often people get better and stop posting. This is our case. Those dark days of her medical odyssey and constant suffering, as all consuming as they were, are just so vastly different than the return to "normalcy." We remember the hopelessness but now she's off running track, taking lessons and going to study group while the rest of the fam, we're all doing our thing...

Surgery can be awful or useless or life saving. Symptoms can be relieved forever or a time or not at all.

For my daughter, decompression surgery has given her her life back.

19

What a wonderful story, I am so happy for your daughter!!

Gma7938 said:

My daughter was barely able to function anymore. She'd been able to go through the motions for a while but the 24/7 pain was getting to be too much. She had quite the ideal life before symptoms all began as a super smart, athletic, full of joy teen, adored by her family, friends and Pekingese. No med, therapy, treatment, or vacation helped at all and we began to worry about her future. Would she have the strength to go on living this way? If it were me...maybe NO?

Watching someone you love suffer is heart wrenching. At the same time, to be in their shoes, I can not imagine. We ended up collaberating with my daughter on a check list since she was too young to decide on surgery herself and too old for us to do it for her. We outlined a few important things in her life. Once she felt like CM had taken one of these things from her, she checked them off. Once all items were checked, then we'd call the NS to set up the surgery with the AMAZING NS we finally found.

ONLY when we thought ALL options had been exhausted AND she felt like the possible benefits outweighed the risks, did we set up a surgery date for her.

Her decompression was in November and it's been miraculous. Every day is a little better and she's back...NO MORE going though the motions and just TRYING to play normal. Life is good once again.

Another member posted that often people get better and stop posting. This is our case. Those dark days of her medical odyssey and constant suffering, as all consuming as they were, are just so vastly different than the return to "normalcy." We remember the hopelessness but now she's off running track, taking lessons and going to study group while the rest of the fam, we're all doing our thing...

Surgery can be awful or useless or life saving. Symptoms can be relieved forever or a time or not at all.

For my daughter, decompression surgery has given her her life back.

20

I do understand where you are coming from as a concerned sister. No one wants their family member to sick or to have brain surgery!

I don't think this site is necessarily pro-surgery. Tracy as you saw above rarely advises surgery for a member and often shares her story to let people understand that it's not all rainbows and butterflies on the other side! We do advise that patients seek a consultation with a good NS, not because we think they should have surgery but because NS treat this condition and are best equipped to help! As you know there are no real treatments for Chiari other than surgery. Believe it or not surgeons do not jump to operate. Even at a so-called Chiari center they won't rush you into surgery. They take time to check for syrinx, tethered cord, and disruptions in CSF. If you don't have any of these issues then you are not a surgical candidate and they take the wait and see approach. If you have one of these issues then they'll give you a run down on how the surgery can help, how it may not help, and what the risks are for not having surgery. Then it's up to the patient. For instance I was told that I would never feel better without surgery and that I would continue to decline, but that I was unlikely to die or become paralyzed. I would of course need MRIs every 6 mos. to ensure that these risks remained low. I was told that with surgery I could see relief of many symptoms but that it was not a guarantee. I was warned that I could feel no better or even worse post-op but that 80% of patients report some degree of improvement. Given this info I was able to make an informed choice. I choose surgery. I felt like my life was diminished and only getting worse. I couldn't go through life feeling that horrible and not even try the one treatment for my condition. Yes I knew I could end up worse or the same but in a way I was ready to accept that because I would have peace knowing I did what I could to improve my situation. So far, so good. I do see a lot of improvements. I am by no means cured and I do still have issues but they are very tolerable compared to what I dealt with before. I have a life now. I can get through the day at work and still have energy to cook, clean, exercise, and socialize. Before I worked, ate, and slept. I have no regrets. I hope to keep feeling this well but even if I do end up returning to the old me I figure I at least bought myself some time!

Best of luck to your sister! Continue to be there and be supportive in whatever she decides to do!