New mom needs advice

[BrenJule]

Hello All,

I am trying to find some advice and help with my experience. I have been diagnosed with a Chiari Malformation. My tonsils are at 13mm, and this has caused a blockage at the base of my brain so my spinal/brain fluid levels are being affected. I have had terrible migraines that cause black outs when I have any sort of head pressure ( laughing, coughing, sneezing, bending) However, if there is no pressure...I only have a dull headache. I listen to everyone elses experiences with this, and it sounds terrible. I dont have much numbness, difficulty breathing or swallowing, or tingling.  The NS wants to operate in 6 weeks. I have a 9 month old baby that will need me. I need to know that I wont have a year recovery time. He is 22 pounds and I need to be able to hold my son, and pick him up, and take care of him within weeks of the surgery. My NS said I will only need 3 months recovery time and will be able to pick him up in a few weeks after. However, I read the stories of ppl who have not been back to normal for years. I am really concerned that it is not THAT bad...and maybe I should not operate??? I am so scared. I am looking for any advice and help from ppl that have been through this. I understand that everyone is different, and everyone recovers at a different speed.

Thank you,

Julie

[linnielou232]

Hi there, and just want to say I'm sorry  to have to have to meet in such bad circumsantances, but this forum is a wonderful one to find.  You will hear different stories and different joureys, but in the long run we have and always will have Chairi.  I know you have heard a lot of difficult stories on here and some I'm sure are scary, but it does give you perspective of What could happen.  I'm one that had to have 4 surgeries all together due to mostly not listening to the NO lifting rule.   We just want to prepare you of the issues you will address if not following the directions after surgery.  For me and making my decision of surgery is the NS askeod me.  "Are you living your life that you want?".  I wasn't living life.  I was somewhat like you are now.  Couldn't bend etc because it causes such severe  HA's.  So it is a tough decision  ecspecially since you have a little one around, but I agree with other's on here.  I can't see how you could lift him after 3 wks.  I have to say I'm coming up to my 2 yr ann. of all my surgeries and they are more positive day's.  As my best saying is now is.  "If there is a will, there is a way".  As far as lifting, you can do as someone above suggested, just prepare yourself to do things differently for a while.  I now do most of the things I enjoy.  I do gardening, but instead of standing I lay a rug outside and sit  to do what I enjoy.  We just want to prepare you for not what bad could happen, but what reality is.  Sometimes it is very hard to adjust to just having Chairi.  I wish you the best in your decision and please do what is best for you.  It sounds like you are ready to have surgery, but only you know, because as my NS told me it doesn't get better if you don't have surgery it just get worse.  I don't regret for a minute having all of surgeries.  I wouldn't be able to live the way I was living.  A lot of things have changes in my life, but they are issues we as a family are willing to change just to live.  We all  have to adapt to different sisuations, just as your adjusting to having a little one around.  You will just have to slow down a little bit more and probably be able to enjoy him even more.  My heart goes out to you in this difficult time,and my heart is with you on your journey,  Just know your not alone, and it's not all that bad what you hear, it's just preparing you for what is ahead.  No matter what we are here for you on your journey.
Linda :)

[selmaS]

  Julie we do have a list of questions for the NS posted in the Health Pages.....scroll to the bottom of this page, and click on the Health Pages link, and then look for the title questions for the NS.

[BrenJule]

Thank you so much for your responses to my concerns. After all of your questions, I realize I knew very little before all of this. I really wish I know what I do now when I had my NS appt. This really did all happen for me so quick. I went to my doc 6 months after my sons birth bc of the headaches. The whole time I attributed them to labor. My doc had me in the CT scan machine that day, and the MRI 4 days later. I saw the Neurologist a month after that, and the NS 2 months after my original docs appt. I knew my headaches were bad... I just did not think that it was going down this road. I am starting to feel as though I want a second opinion. However, upon researching my NS he is the cheif of neuro surgery, and director of residency. I dont think I am going to get a better surgeon then him in my area. My main concern is my son, and my recovery time.  I will def ask about harvesting my own patch. Thank you to everyone who suggested that.

Patti,

Thank you so much for posting your story. It was just the type of story that I needed to hear. I can not tell you how much I appreciate it. I am so happy to hear that your son is living a normal life, and recovering so well from all of his medical experiences.

If anyone can suggest some questions that are pertinent to ask your surgeon...please reply.

Thank you,

Julie

[Viva001]

Great post, Patti!
Kids make better patients because they usually aren't afraid and are very future-oriented.
I'm going to re-do my whole garden, somehow!

[D4L]

I just had to respond when you said:

"I also know that people dont post the positive side of the surgery. All you hear about is how terrible the recovery is, and the complications post surgery, and how they are still unable to resume normal day to day tasks."

My 16 yo son just had his 3rd decompression surgery.His recovery each time was better than we expected. Agreed that each person is different both in symptoms and recovery. Can't emphasize that enough!

The first was a bit longer recovery than the other two. That was the one where they actually cut bone when he was 9yo. The 2nd & 3rd were repeat duraplasty and recovery was ridiculously fast at 12 & 16yo.

After his first surgery he had a CSF leak and there was no lifting for the first month. He was in the hospital for 3 days. Pain at home was managed by IB & Tylenol every 3 hours round the clock for week one. Then we could stretch it out at night so he could sleep. By week 2 it was only when he asked for it which was not often. By week 3 he almost never needed pain meds. Back to school in 4 weeks and feeling great.  At 6 months he was competing in cross country running and totally himself.

Recovery from the second surgery was made much faster by a different type of incision in the neck muscles. It was described as a "T" incision our surgeon used previously on Ped cancer patients. EVERY one was happy that  this new technique made recovery and neck pain stiffness resolve fast. Again training for CC in 4 months and at 6 months competing in CC.

This last surgery was on a Friday and we left the hospital Sunday afternoon.Pain meds again only  IB & TY. On Monday he stopped in after school to see his buds at track practice. He could have gone to school mid week but I was afraid of the horseplay in the halls. He does not look hurt. He went back to school the next Monday. He had full range of motion in his neck and resumed driving at 4 weeks & went to Prom :) He was cleared to jog 2 laps, the next week 3 etc. At 8 weeks he got the OK to actually RUN in the last meet of the season. Of course he was careful not to increase cranial pressure by straining. He is a very happy and pretty healthy kid. He is headache free and only has loss of skin sensation on one side of his torso.

I feel so sheepish posting this because so many people have a tougher time. But remember, as with any message board, when people feel great again they don't usually come back to post as opposed to home bound folks.  

Life can be great even with Chiari ( and Syringomyelia and scoliosis as in my son's case).  The key is to find a CM specialist with whom you can communicate. Keep a positive mental outcome firmly set in your head. Take recovery as slow as you can. No need to rush if you can help it. Plan to modify your routine and habits as in the great suggestion to have your child crawl up on your lap, etc. No need to be supermom.  Ask for help at home  or support on this board.

We'll be rooting for you Julie!
Patti

[selmaS]

  Hi and welcome to the Chiari forum.

First, there is no way ur Dr can know now how u will be post op to give u a time line, that is one thing I learned with this, we are all different and respond to surgery diff...as for lifting 22lbs that wiggles...sorry that too, I can not see happening..JMHO...

So u have had the CINE MRI and u have a CSF obstruction? Were u tested for related conditions? EDS< ICP< SLEEP APNEA< DISK ISSUES<SYRINX<TETHERED CORD?

  I had surgery and had a positive experience....no set backs...but, the time frame Drs give is BS...as I said we r all diff and depending on what else u have going on, may determine how u heal...lifting a 22 lb child a few weeks post op will not help u...yes u do have to get up and walk and move, but not lifting...if ur child can crawl onto ur lap then that is how u should get him/her, not from bending to the floor..even now.

Giving birth can be one of the biggest triggers to flare up chiari symptoms and if it  is affecting ur overall health u may need to address this now and not put it off, what struck me was ur Dr did not give u a choice if u wanted this surgery or not.....

Ask questions, if it can wait if not y, what type of surgery is this, will he open the dura, if so what type of patch....etc....

Most important, know u r not alone, this surgery has benefited so many that do not come back once they get back to work and their life....and we r here for u : )

[zygy2]

I can tell you that even if you knew what you were doing and were confident with your choice you would still second guess it at some point :)  We just can't know everything!  I fully understand your problems with pressure, I had such horrid head pains and not being able to laugh was not acceptable, especially with kids!  I could not stand not being able to laugh at my kids or bend over to get the laundry out of the dryer or play badminton :)  It was so many things that were messed up.  I had other issues going on but not laughing was the reason I went to the NL to start with, those pains were way way way too painful.  I could have waited but I wanted to laugh again.  This week I will be having my 5th related surgery and if you ask me "would you do it again" I think I have an a different answer each time but mostly I am happy that I have done it.  I can laugh!  I wish with my first NS I knew what I was getting into, I wish I had known all that I know now.  I wish I had pushed harder for harvesting my own patch and not used the synthetic.  Lots of wishes but I did what I did and here I am now!  I don't have much family close by either and that does make it much harder.  You will need help for a while!  You will not be able to lift much for quite a while and you need to follow the rules :) Take it from me, I still have a leak and it is not fun.  I would make sure that you get all the time you need to ask all the questions you can think of and if they can't give you that than you need to move the date of the surgery until they can find the time!  -zygy

[irislita]

Rahe is so sweet always ;)
Dont let urself rush into sth!!!! Do u know how many operations ur doctor did on chiari.i didnt go to a chiari specialist and thats sth i would never do again as too less doctors really understand this conditions plus related issues which come along!!!! Have u.been checked for anything else???

[Rahe28]

Hi.Sorry to welcome you in this way, but welcome to our community.

Let me first start by stating that as a new mom I can relate to you. I have 3 kiddos. My youngest is  going to  be 4 in June. I was scheduled to  have surgery on May 24th and it was postponed until June 7th. My biggest fear of all of this is that  I would  miss the entire summer with my kids. I do have someone that will come to help during the day...but I just didn't want to miss anything...dance review....2 birthdays in June ...etc. however...I have a major csf blockage and my legs and hands are going numb at any  given time....and if  I don;t have the surgery the damage could become more permanent. And that...willmake taking care of my babies for the rest of my life impossible. The last thing that you want is to put it off and it get so bad that have even worse permanent damage that is irreversible. I know that you don;t want to not be able to take care of your  little one...I do truely understand that...but please consider that fact....that surgery may give you the chance ot really the be the mom to your son that he needs. I still lift  my daughter for lots of things as she is awfully tiny...only 28lbs at 3. I was so worried about all of this and then                                 my husband asked me well, would you rather watch from a wheel chair for the rest of your life instead of foronly a few months.My dr did say that if the recovery goes well that i could probably start to care for my kiddos(picking them up and such ) by the 3rd month....though he advises against lifting things at all...even now. I am only supposed to life things that are less than 5 lbs. I have been a bad patient...and have not listened to a word  of it. Sigh....and I pay for it.
I just wanted you to know that someone else was feeling the same way....becasue no matter how big they are....we still want to pick up our babies and hold them tight.
There are ways around picking him up though. My DH works also and I am a stay at home mom....and I have for the last two years almost 3 had to have my babies crawl up into my lap instead of picking them up...and when they were still in diapers (my two little ones are 11months apart) They were 1 and 2....I had a sperate changing station set up. zTake a small rectangle wicker basket and put wipes..diaper cream...diapers..etc...powder...in it...have it close to either the couch or something else that you can have your little one crawl up to...allow him to get on your legs and slowly lift him uintil you can pull    him up  a little to reach the couch. Put out the changing pad on the couch bfore hand and    ...bam a new baby changing station :)
I hope this helps you some. I know that the joy of a new little  one is the best in the world and you don;t want to miss a bit of it....but please remember that   you will still be there...and  see it...you will just have to atch from a distance for a little while, to  get a lifetime of memories that you can hold his hand for. :) Best wishes to you and I hope and pray that you find  the answers and medical attention that you need and deserve.

[BrenJule]

Thank you for your comments. For me my symptoms only started in the past year. I assumed I was getting headaches from pushing so hard during labor. I know that sounds silly. But my headaches and pressure with blackouts and intense pain, only happened when there was any pressure. I have not been able to laugh normally in almost a year. I am scared to laugh hard, my head feels like it is going to literally burst open. I always have a stabbing pain at the base of my neck, which leaves me with a dull headache for the day. Those were my only symptoms. Yes they are doing the laminectomy. My surgeon was very quick to tell me they were operating. By the time I really processed him telling me that, my appt was over. He was so casual about it, and made it seem like no big deal. However he assured me that by the end of the first month I would be able to pick up my son, and by 3 months return to work with no issues. When I called the office, I felt like I was a bother. He does not have any appointments available until my pre-op. I am so scared and so worried. I truly think it was not as big of an issue that I was dealing with.

I am currently on maternity leave. At the end of my maternity leave, I will go on sick leave (16 weeks). At that point I will more then likely have lost my job. So I will need to be able to apply for jobs, go to interviews, and be able to return to work. More importantly, I need to be able to care for my son. My family does not live close by, and not able to care for my child while my husband is at work forever. I NEED and want so badly to be ok to lift him within weeks of the surgery. He is 8.5 months and will be crawling any day now. He will need me to be able to chase after him, pick him up off the floor, out of his crib, into his high chair, in and out of the bath, onto his change table..etc. I am at the point where I dont know if this surgery is the best idea.

I also understand the reverse. That the symptoms will continue to worsen. I have noticed in recent weeks that there is tingling nerve feeling at the bottoms of my feet when I step down on them. I want to feel better. But I know that I could live and deal with things the way they are no problem...if that means I can take care of my son myself. This is such a crucial time in his development, I dont want to miss out on it.

I also know that people dont post the positive side of the surgery. All you hear about is how terrible the recovery is, and the complications post surgery, and how they are still unable to resume normal day to day tasks. I just wish I knew what I should be doing.

THank you

[irislita]

I understand ur concerns and all of us heal different.i really dont wanna scare u,but in my case it took quite long to be able to hold things and i still have to be very careful 7months post op.but i also have to say that symptoms in some cases progress so quick...i dont have a part in my body that is not affected and i wish i could have stopped progression earlier.we all have to make our own decision and each person is different.keep us posted.will they do laminectomy that means shave the first vertebra(s)??? I think that the healing in this case needs more time.

[zygy2]

Hello and welcome!  You always have to remember when reading these boards that the people that solve their problem move on and have less need for the board!  Then you get less postings about how great things are going!  There is a lot of turnover in here for people so that has to mean that lots of people have moved on feeling much better!  For some of us, it takes a bit longer but I too look forward to the day that I don't feel the need to post!  I am two years post op from my 1st surgery and although there have been some very difficult times there are still lots of good times too!  I had my decompression because of the cough headaches when I did things like laugh.  Even with all I have been through, I am very very happy to be able to laugh again.  I could not laugh without crying the pain was so intense before.  What are you having the surgery to fix?  Are you at the point where you feel you need the surgery?  Are you happy with your surgeon and their choices for your surgery?  You want to know what they are doing and that it is what you want.  Hopefully things go very well for you and you remember to come back to the board and tell everyone how good things are :)