HomeLatest imagesRegisterLog inFollow us on facebookFollow us on twitterFollow us on youtubeFollow us on LinkedinFollow us on PintrestContact usFeedback


Share  | 
 

 Advice needed

View previous topic View next topic Go down 
Go to page : 1, 2  Next
AuthorMessage
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Advice needed   Advice needed I_icon_minitimeTue Oct 01, 2013 11:42 pm

I'm wondering if anyone can help me. I have a revision on my LP shunt nearly 3 weeks ago. The part at the stomach came out and they fixed it. I was fine until Saturday i woke up with excrutiating pain at the base of my skull and neck. It feels like something is pulling at the back of my neck hard to describe. I went to A & E yesterday got a scan on my stomach. I met with a neurosurgeon who advised that the shunt was in place and all was ok. I asked him what the pain was - could it be the shunt not working properly or could it be blocked. He advised me that I needed to see a neurologist to find that out. He basically dismissed my pain. I was sent home with an appt to see a neurologist today. I seen the neurologist and he advised that a test should have been done by the neurosurgeon to see if the shunt was blocked or working. As he is not my original neurologist he can't get involved. He was very good and contacted my neurologist who is another hospital and I see him tomorrow. I have to tell him my story and try convince him to contact the neurosurgeon team to get the shunt investigated. Has this happened to anyone else. I'm not very fond of this neurologist and I'm afraid he will dismiss my pain and I will get nowhere. I've lost 5 pounds in weight since Saturday due to the pain and not being able to eat. I have an ice pack permanently at the base of my skull and taking painkillers every 4 hours. I'm so upset at the way I am being treated. 
Back to top Go down
Wylee
Member
Member
Wylee


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeWed Oct 02, 2013 1:26 am

My goodness, you are having quite a time.  You do so well when the shunt is working right.  The docs should do a myelogram.  It's the only way to see exactly what is happening.  I would beg and plead for one when you see the doc tomorrow.  Hope all goes well.
Back to top Go down
medmisfit
Admin2
Admin2
medmisfit


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeWed Oct 02, 2013 2:21 pm

I'm so sorry you're struggling again! I would definitely request they test the shunt..maybe even MRI to rule out Chiari Malformation, which can form with LP Shunt. Linda's right, you seem to do so well when the shunt is working..that should tell them something! If not, request a 2nd opinion. I don't know if you have patient advocate groups over there, but you can look into them if you don't feel like you're getting anywhere with doctors.

Good Luck, and please keep us posted!
Back to top Go down
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeWed Oct 02, 2013 4:43 pm

Ny neuro couldn't get through to the nuero surgery team left ots of messages.  I waited 3 hors with no reply. All she could do was book me in for an LP under x ray on Monday.  No One is happy to do a LP without the x ray because of the positioning of the shunt.  I do understand that.  She told me to go back to the A & E in the morning and refuse to leave till someone finds out what is going on.  So that's the plan tomorrow
Back to top Go down
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeWed Oct 02, 2013 11:25 pm

a big lump the size of a golf ball has just came up on my back.  I think they will finally believe me that my shunt is not working when I go to A & E in the morning
Back to top Go down
Wylee
Member
Member
Wylee


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeThu Oct 03, 2013 12:49 am

I wonder if that's the site of a leak?
Good luck tomorrow.  Just wish they would fix it already!!censored
Back to top Go down
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeThu Oct 03, 2013 9:23 pm

Update - spent the day in a & E, eventually seen my neuro surgeon. He advised that they only way they can tell if the shunt is blocked or not working is with an LP. They also want to do it under X ray the soonest they could get it done is Wednesday but my neurologists hospital can do it Monday at 12.00 so I'm gonna go there instead. He said there was no point in admitting me I would be more comfortable at home. He gave me a prescription for painkillers which are helping a little and also to take diazipan just before bed. I'm so tired gonna have a bath and get into bed xxx
Back to top Go down
Wylee
Member
Member
Wylee


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeFri Oct 04, 2013 12:11 am

Oh My!!  They don't have the ability to do a myelogram??  How awful!  An lp will tell them what the pressure is at the moment it is done.  If the pressure is elevated, it won't tell them where the issue is, whether it is a blockage, the tubing kinked or failure of the valve.  If the pressure is low it won't show them where the leak is.  Maybe a trip to England is needed!!
Back to top Go down
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeMon Oct 07, 2013 2:49 pm

so just back from getting my Lp.  Pressure was 7!!.  I'm so confused they have no idea what is causing the pain.  Is it possible that 7 is too low for me, maybe I don't need a shunt anymore??
Back to top Go down
Wylee
Member
Member
Wylee


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeMon Oct 07, 2013 5:10 pm

Did they by any chance say what caused the lump on your back?  Might it be a leak?  7 is indeed a bit low, and since you are having headaches etc, perhaps it is low pressure.  If they would do a myelogram they would know if you do have a leak and can do a patch.
You were doing so well on your shunt when it was working properly, I think it is wishful thinking that you don't need it anymore.  It just needs to be tweaked.
Back to top Go down
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeMon Oct 07, 2013 5:30 pm

Ha wishful thinking is right Smile.  I've had low pressure before where i literally couldn't lift my head off the pillow I don't feel like that.  The headache isn't bothering me too much its the pain the back of neck and ears that are so painful

I'm waiting to get an MRI contrast of the brain and neck, hopefully won't be waiting too long.  I see my neurosurgeon on Friday so I will mention the mylegram to him and see what he says.
Back to top Go down
medmisfit
Admin2
Admin2
medmisfit


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeTue Oct 08, 2013 6:38 pm

It does sound like your pressure is too low. I can't imagine they had your shunt set at 7, so a leak makes the most sense. I had overdraining issues for years and was still able to work because the symptoms weren't as intense as LP/epidural headache. Basically, my symptoms just got worse the longer I was up and I needed to lay down after dinner. I noticed a definite improvement at that point. I had pain in the back of my head, neck, and spine. My ears would hurt and face/hands would start to tingle if I pushed too long. Any of that sound familiar? I also developed a Chiari Malformation because of the constant pull of LP shunt, so not sure which symptoms were from overdraining and which ones were attributed to Chiari..they're also so similar it's annoying at times! The MRI should clarify things and show any leaks, so I'm glad they're doing it. Good luck, and please keep us posted!!!

hug
Back to top Go down
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeTue Oct 08, 2013 9:36 pm

Have all those symptoms.  My shunt isn't programable.  No news on MRI yet.  I will keep you updated.

Thanks
Back to top Go down
medmisfit
Admin2
Admin2
medmisfit


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeWed Oct 09, 2013 2:18 pm

Try to rest and keep your positive attitude..definitely worth the wait for fluroscopy!

Sending you all positive, healing vibes..hug
Back to top Go down
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeWed Oct 23, 2013 8:11 pm

Got my MRI today, hopefully won't be waiting too long on results.  Really hoping something shows up.  Pain is really bad last few days, painkillers just not working any more, not sleeping great either so I know that has me feeling worse.  Its really starting to get to me :(
Back to top Go down
Wylee
Member
Member
Wylee


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeWed Oct 23, 2013 8:35 pm

I hope they are able to see something on the MRI, but I only wish you could have a myelogram to see if there is a leak.

Keeping fingers crossed for some kind of news SOON!
Back to top Go down
medmisfit
Admin2
Admin2
medmisfit


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeThu Oct 24, 2013 3:12 pm

I'm sorry you're struggling so much! I'm sure you're trying all the tricks to take the edge off, but just remember caffeine and laying flat helps low pressure headaches. Experiment with hot and cold packs. I usually like cold on my eyes and back of my head..heat on my spine and incision sites. Since your surgery was recent, you may alternate cold and hot to keep swelling down. If laying flat doesn't help, try laying on your side between 45-60 degree angle..may be some trial and error, but you'll get some relief if find your sweet spot. I can't think of anything else right now, but I'm sure there are other ideas listed in Alternative Therapies Or IIH Helpful Coping Methods sections.

Take care of yourself!
hug
Back to top Go down
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeSun Nov 03, 2013 10:48 pm

Had my MRI on the 23rd Of Oct still no news back from nuero surgeon :(.  I'm absolutely miserable and in so much pain last few days.  His office doesn't open till Wednesday will give them a ring then.  I just don't know what to do.  I have a permanent lump on my back above my scar, headaches are sharp and my ears hurt so much.  Last night going to bed I hoped I didn't wake up today.  I'm very open with my husband and told him how I've been feeling.  It upsets him that I feel like this and he feels so helpless all he can do is hug me.  Should I go to my GP and see what he can do for me or am I wasting his time?  I know my shunt is not working since the revision 8 weeks ago.  I had a working shunt for 4 months so I know its not working.
Back to top Go down
Heidi
Admin1
Admin1
Heidi


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeMon Nov 04, 2013 4:17 pm

Get your GP out to you or ring the ward where you had your surgery. IF you don't get any joy go to A&E. Do this asap. I'm so sorry I didn't see this much earlier.
Back to top Go down
http://www.ihaveiih.com
medmisfit
Admin2
Admin2
medmisfit


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeTue Nov 05, 2013 3:57 pm

I agree w/ Heidi, this doesn't sound like anything that should wait. Take care, and keep us posted!
Back to top Go down
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeSat Nov 09, 2013 8:09 am

Update:  Went to my GP he sent me to a & E.  Met my neurosurgeon, he got my MRI results everything has come back normal.  He doesn't know what is causing the pain.  I asked was it possible the shunt was over draining.  He said my pressure was 7 when they done the LP a few weeks back and that this was normal.  I said I would have to disagree that I think 7 is too low for me as my pressures were always around 40 before the shunt.  He was very dismissive to me and spoke to me like I didn't have a clue, even when I asked why my back keeps swelling at the scar spot but goes back down, he just said thats normal and just fluid pockets!!.  He sent me home and will refer me back to my neurologist who is in anther hospital as there is nothing more he can do.  I went back to my GP on Thursday and he is also going to contact my neuroligist to see me.  He thinks 7 is too low for me but he said its gonna be hard to convince the neurosurgeon of this.  I'm in Dublin there is only 1 hospital that does shunts and he is the nuerosurgeon so what do I do.  I don't have another hospital or nuerosurgeon to get another opinion.  I know my GP is doing all he can for me but I'm so upset that I may just get left like this :(
Back to top Go down
Wylee
Member
Member
Wylee


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeSun Nov 10, 2013 1:08 am

You can't be left in this state of agony.  That is just not acceptable!
How far would you have to travel to find another neurosurgeon, especially one who does use adjustable valves?  Might you have to go to England?
Back to top Go down
Heidi
Admin1
Admin1
Heidi


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeSun Nov 10, 2013 4:54 pm

You can't live like that and it is not acceptable for them to leave you to. I wonder if the Patient and Client Council could help you. It may be helpful to give them a ring and see if they can give you either help or advice with this. Please let us know how you get on and if they could help you.
Back to top Go down
http://www.ihaveiih.com
medmisfit
Admin2
Admin2
medmisfit


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeThu Nov 14, 2013 5:14 pm

I agree..that is completely unacceptable! I had overdraining issues for 3yrs before I found a neurosurgeon that told me opening pressures aren't valid for overdraining issues. He said that you only drain when upright, so getting LP laying down will skew the results. I know how frustrating and disheartening this can be, so hang in there! Try the Patient and Client Council to see if they can help, and keep us posted..

hug
Back to top Go down
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeThu Nov 14, 2013 8:52 pm

Thanks everyone,  Monday I rang my neuros hospital and they told me they had to wait for my referral to see me.  I wrote a letter in myself to the hospital explaining all my symptoms and would appreciate if they could see me and help me get to the bottom of it.  I only posted it yesterday and I got a call today from the neuro team, she talked to me for half and hour and listened to everything I had to say.  I have to post in my MRI scan and she will also contact the MRI clinic for the report of the MRI.  I felt she was very understanding and listened to everything I had to say and asked me lots of questions.  She has given me some hope that I will eventually get this sorted.  She said she will be in touch with next week.  Fingers crossed I can get to the bottom of this xxxx
Back to top Go down
medmisfit
Admin2
Admin2
medmisfit


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeFri Nov 15, 2013 2:34 pm

That is great news! Sounds like your persistence has really paid off..good job!!! It definitely makes it easier to take when you can see the light at the end of the tunnel..hang in there!!!
Back to top Go down
Heidi
Admin1
Admin1
Heidi


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeFri Nov 15, 2013 5:00 pm

Great news!! I'm all for taking matters into your own hands approach. You were absolutely right to, and I hope that other members take inspiration and do the same thing when necessary. Fingers crossed that things now get sorted for you, and quickly. hug
Back to top Go down
http://www.ihaveiih.com
morrise
Member
Member
morrise


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeTue Nov 26, 2013 8:59 pm

Finally getting to see my neurologist on Friday,  What do I need to do to get him to believe me that my shunt is overdraining and that a pressure of is too low for me.  I know I can go through all my symptoms.  I just so afraid he's not going to believe me and send me for tests to see if it it something else

 These are the symptoms I have on a daily basis and sent in my letter to him

- dragging sensation from ears to neck on both sides
- pain in both ears - feels like they are bleeding
- sharp pains in scalp & tight hair - like my hair is being plucked & sunburned type of feeling (finding the cold morning very sore)
- headaches - mostly low pressure by the evening, feels better when I lay down
- heavy head- feels like my head is really heavy and falls back, I have to pull it forward
- blurred vision in right ear - its not constant only happens a few times throughout the day ( confused about this as I always had blurred vision when my optic nerves were swollen)
- pinched nerve on right side of neck- goes from base of skull into my neck, happens a couple of times a day and last a couple of seconds.  Somedays it happens alot other days only happens a handful of times
- balance, light headedness & when walking feel like I'm walking off balance

- lump(golf ball size, soft when I touch it) appear above the scar on my back.  It is not there all the time mainly in the evenings and gone by the morning.  I did mention this Mr David O'Brien when I met him on the 11th October and my husband showed him a picture of it.  He advised that it was a fluid pocket and was normal and nothing to worry about.

I have lost 2 stone in weight since my operation on the 28th of May 2013 so this is why I think my shunt is now overdraining and I no longer need it.

Any advise would be much appreciated xxxx
Back to top Go down
Wylee
Member
Member
Wylee


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeWed Nov 27, 2013 3:01 am

I would print out articles on low pressure and low pressure symptoms, such as this one from Johns Hopkins, one of the top IIH Hospitals in the U.S.:  Johns Hopkins - low CSP

Be firm and assertive but not threatening.  Can you have a male figure come with you?  Sometimes the docs will "listen" better if they hear it validated by a male!!
Back to top Go down
Heidi
Admin1
Admin1
Heidi


Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitimeWed Nov 27, 2013 6:48 pm

None of that sounds normal! The point of having a shunt is that you don't experience any symptoms, and the fluid pocket being normal is the first I've heard, whenever I've had a fluid pocket I've been whipped off down to the theatre to have it sorted out.  The fluid pocket  could indicate that the end of the catheter in the shunt is moving about and not anchored as it should be. Your symptoms alone indicate the shunt isn't working as it should be. LP shunts are known to migrate.

I myself had an LP shunt for 5 years until it was revised to a VP shunt, at one stage I had both, but the second LP shunt caused a fluid pocket at the base of my spine which was aspirated but then led to meningitis, so it was removed. I am concerned that your Doctor is not at all concerned regarding this intermittent fluid pocket, and is quite happy to leave it, without considering the risks of doing so. I agree with Linda, take someone with you when you go, and insist that this is properly investigated. If he insists that it is normal and there is no need, demand a second opinion.


Last edited by Heidi on Thu Nov 28, 2013 5:10 pm; edited 1 time in total
Back to top Go down
http://www.ihaveiih.com
Sponsored content




Advice needed Empty
PostSubject: Re: Advice needed   Advice needed I_icon_minitime

Back to top Go down
 

Advice needed

View previous topic View next topic Back to top 

 Similar topics

+
Page 1 of 2Go to page : 1, 2  Next

Permissions in this forum:You cannot reply to topics in this forum
www.ihaveiih.com :: Living with IIH ::   :: Group Huddle-
Jump to:  
DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
Protected by Copyscape Web Copyright Protection Software
Top Disability Websites
Free forum | ©phpBB | Free forum support | Report an abuse | Forumotion.com